by Robin

A Fifth

Disclaimers:

  • It’s taken me a long time (five years) to write about my fifth experience with breast cancer because I’ve been through a number of changes, including the illness and passing of my dear husband, Mike, in June of 2020 after 38+ years of a good marriage. He was 77 and I was 70. So there have been some changes in my life to which I’ve been adjusting.
  • One of the breast “cancers” I’ve had was DCIS (Ductal Carcinoma In Situ) in 2006 in my right breast. I include it in my history because the medical world treats it as cancer when, in fact, it’s a non-invasive tumor surrounded by healthy cells and has been found in autopsies of women who had no record of breast cancer or of DCIS. For all I know, it’s a normal body thing. But since I’d had breast cancer in the left breast, it made sense to remove the DCIS from my right breast. There was no treatment for it beyond a lumpectomy.
  • This is long. I’m sorry. There was a lot to it.

~~~

In November of 2016, my breast cancer surgeon (Dr. Rebecca Yang, known to me as “Rebecca”) found another cancer along the scar line of the prior (fourth) surgery. She guessed it was the same cancer and I can’t argue that: I don’t have the paperwork to know if it, too, was an entirely different type of breast cancer as the others had been. Given my history, it probably was; but I’ll give Rebecca the benefit of the doubt, because she earned my respect and trust.

I first met Dr. Yang at the hospital nearest my home. By 2006 she’d moved to the Lahey Clinic in Peabody, MA — an hours drive each way for my husband and me (he always joined me with these appointments). Rebecca was worth the extra effort because she always took the time to set me at ease. The day she suspected another cancer in the left breast she told me she wanted me to get an ultrasound biopsy before I left. I agreed. My dear husband sat in the waiting room for about three hours that day.

As the ultrasound was getting underway, I was laying on a table with a doctor at my side who was injecting a numbing solution … in the wrong place. I told her she wasn’t numbing the area in which she’d need to remove tissue and she told me she was where she needed to be. We waited 15 minutes for the lidocaine (or whatever it was) to take hold, and then she got to business. I was right: she hadn’t numbed the area she was working on so she was digging out a sample of tissue from my left breast without anything to numb the pain. In a knee-jerk reaction, I pulled away from her and cried out that the procedure was hurting a lot! She told me to lay still or the biopsy would be scheduled for another day because she had a busy schedule. Delaying the biopsy would mean another half day dealing with this, so I gritted my teeth while tears ran down my cheeks. She removed tissue from the breast and when she was done she quickly left the room. The nurse who’d been there during the procedure suggested I not get up for a while. She handed me a tissue to wipe my eyes and asked if I’d like something to drink. I asked for Ginger Ale but was unable to sit up to drink it.

Rebecca (Dr. Yang) had told me the tumor was “on the wimpy side” and there was no hurry to remove it. I was fine with that but it meant I’d be going through a fourth surgery on my left breast, which was already considerably smaller than my right breast due to prior surgeries. I asked if it was possible to adjust my breasts so they’d be about the same size. She said yes, and told me she knew a good Plastic Surgeon with an office down the hall. 

My husband and I met Dr. Wou, Plastic Surgeon, about 2 months later at the Lahey Clinic in Burlington, MA. (At the time, the Lahey Clinic had clinics in both Peabody and Burlington, MA, and Dr. Wou saw patients at both.) We waited about 45 minutes before my name was called. Mike and I then sat in one of his offices for another 15 minutes before Dr. Wou came in. He was in his 40s, friendly, and willing to talk. 

Both Mike and I complained about the wait. Dr. Wou suggested that for future visits I should see him at the Peabody location because “they only double-book there”. I asked what that meant and he told me appointments are made for two patients at the same time in Peabody, whereas in Burlington appointments are made for three patients at the same time. I hadn’t heard of this practice and was stunned. How does that make any sense? We agreed to meet him in Peabody for future appointments.

Mike said he thought the double and triple bookings must be an effort to increase hospital profits, to which Dr. Wou replied: “That’s not so. This hospital doesn’t make a profit.” We looked at him, confused. He explained (and I paraphrase): “Hospital doctors like me don’t make the kind of money most people think, and we have no say about how things are run. I have no control over the decision to double or triple book appointments. In fact, I have little control over anything here: there are three Plastic Surgeons who report to me and that’s it. I have no authority over the nurses and aides or the policies of this department.” 

We pressed the point: How could it be that the hospital was making policies which didn’t improve profits? Dr. Wou responded: “There are three industries making a profit from medical care these days: pharmaceuticals, insurance companies, and software programmers.” 

For the first time, some of the changes I’d seen over the years came more clearly into focus. Over time, the reception desks which once had four or five staff to check patients in had gradually worn down to one or two staff with long lines of patients waiting to check in. Unlike 20 years prior, when checking in was a breeze, today the person checking me in nearly always says: “the computer is really slow today”, or “I’m having problems with my computer.” Comments like these aren’t limited to medical settings either: I hear them at banks, retail stores, supermarkets, vendors, online customer service … anyone using a computer. (A subject for another post.)

Dr. Wou looked at my breasts and told me he could remove the (many) ugly scars from previous surgeries on the irradiated left breast, and he’d make both breasts the same size. He took my measurements and told me he’d get together with Dr. Yang to schedule a date for surgery. The date was eventually set for July 26, 2017, over six months after the diagnosis and botched biopsy.

As with all prior surgeries, I had a pre-surgical appointment a week before surgery to provide current medical information and to talk with the Anesthesiologist. For the surgery that would take place in Peabody I needed to go to the Burlington office for the pre-surgery meeting. When I asked about that, I was told “that’s how we do it.”

By then I’d compiled a summary of my medical history because it’s too long (five typed pages) to write it out for new doctors. The summary goes into detail about difficulties I’ve had with painkillers and anesthesia: I’ve awakened during two surgeries; for an in-office sigmoidoscopy I was given insufficient anesthesia and was in pain while the doctor ignored my cries for more anesthesia; and I’ve awakened in post-op, more than once, at a pain level of 10. In short, I need more anesthesia and painkiller than the average patient, and I need to convince Anesthesiologists to believe me. Based on the fact that I’ve had ongoing difficulties during and post-surgeries, I’ve concluded that Anesthesiologists don’t read my chart to see how I’ve done with previous surgeries. That seems negligent, but I won’t dwell. They’re under more pressure than most of us know.

For the Burlington pre-op appointment, I asked for extra time with the Anesthesiologist so he or she could adjust the dosages for pre- during- and post-op. I gave the Anesthesiologist the history I’d compiled, and drew his attention to the sections on poor responses to painkillers and anesthesia, including the fact that morphine increases my pain. In response, the man looked bored, so I left hoping the information I’d provided would at least make it into my chart.

On the morning of the surgery, my husband and I were the first to arrive on the surgical floor and I was the first called to pre-op. I wasn’t given pre-surgical “relaxing” medication because “we need you to be alert when the doctors see you before surgery”. The Anesthesiologist poked his head into the room and introduced himself. He wasn’t the same guy I’d talked with in Burlington, which was discouraging. He told me he’d prescribed morphine for post-op and I lost it. My reaction to morphine is a well-highlighted part of in the summary of my medical history. I told the Peabody Anesthesiologist what I’d told the guy in Burlington and asked if he’d even gotten a copy of the medical history I’d provided. No, the Peabody Anesthesiologist hadn’t gotten anything.

While my husband went to the car to get an extra copy of the summary I’d compiled, I told the Anesthesiologist the only painkillers I know of which are successful for me are Oxycodone and Oxycontin. He told me Lahey doesn’t carry IV oxycodone or oxycontin so that wasn’t an option. I asked him why that was and he told me he guessed those drugs weren’t included in the negotiations Lahey had had with the pharmaceutical provider for IV painkillers. And thus I was agitated when Dr. Yang happened to arrive. My husband had returned from our car and handed her the copy of the summary I’d prepared and she ordered it be scanned and put in my chart. 

The Anesthesiologist disappeared while Dr. Yang, and then Dr. Wou, came to see me prior to surgery. I was in distress that my pain-management concerns had been ignored, although both surgeons assured me the situation would be dealt with and my pain would be controlled. Shortly after they left, the anesthesiologist came back to the room and told me he’d changed the post-op medication to Fentanyl. I’d never had Fentanyl for pain but figured I had little option.

Before long, I was wheeled into the operating room where the anesthesia quickly knocked me out and, to their credit, I didn’t awaken during surgery. However, when I awoke in post-op, my pain was at level 10. It was as if both breasts had been attacked with knives and I’d been left on a roadside in agonizing pain: except I was in post-op with nurses who didn’t know what to do. I cried. (Side note: I later learned the dosage of Fentanyl the Anesthesiologist had prescribed was too low for my body and that’s why it didn’t help. Years later, during an unrelated issue, an Anesthesiologist fully listened to my problem, believed me, and used enough Fentanyl to keep me out of pain during and post-procedure.

The post-op nurses at Lahey met with other nurses but nothing came of it for five hours. You read that right: I was in post-op for five hours at a pain level of 10. Why? The Anesthesiologist had moved on to other surgeries, so they were unable to reach him. And no, there wasn’t anyone else they could talk with. And no, they couldn’t give me any other kind of painkiller because they needed a doctor’s prescription to do that. Eventually, I was given oral oxycontin and within five minutes, the pain subsided. I was told I could spend the night at the hospital or go home. Given the uncertainty of the pain, I decided to stay the night where (I hoped) there’d be a doctor who could help if the pain shot back up. The nurses made notes in my chart, and told my husband and me I’d be given a dose of oxycodone in another four hours to keep the pain at bay. From there I was rolled into a hospital room with a lounge chair on which my husband would sleep that night. (Yes, he was that protective of me.)

As the four hour time period began to come to a close, the pain was returning. I pressed the button to call for a nurse but no one came. After 10 minutes or so, my husband went to find a nurse to let her know I was in pain and that it was time for my next dose of painkiller. The nurse came into the room nearly stomping her feet. She told my husband and me that she wasn’t required to follow the instructions of the post-op nurses and that I’d get painkiller when she was doing her rounds and not before. She then turned and stormed out of the room. 

My husband (my hero and advocate) followed her while yelling that his wife needs painkiller NOW! The nurse phoned the hospital’s security and, as later reported to me by Mike, when the security guard arrived and the nurse told him to remove Mike from the premises because he’d yelled at her, the guard looked at Mike and then at the nurse and said: “Ma’am, his wife is in pain. Why don’t you give her the medication she needs?” Then the guard turned around and left. 

 I got my medication and was able to fall asleep without pain. I was awakened once in the middle of the night for another dose, and when I awoke the next morning, I was given another dose and then a woman I’d never seen before arrived and told me it was time to go home. She hurriedly asked how I was feeling and I tried to tell her I was in a lot of discomfort, but she rushed me through getting dressed, handed me prescriptions for Oxycontin and Oxycodone, and told me to take them as needed. Mike then drove the hour it took to get us to our home, and me to my own bed. The following morning (a Sunday) I awoke again at pain level 10 and the painkillers weren’t helping. I told Mike I needed to get to the E/R at the hospital near our home.

When I got into an E/R room, a Physician’s Assistant (PA) came in to see me. Mike and I told him what was happening and the PA asked if he could have a look. While I’d been in surgery, a bra had been put over the area that was operated on and when the PA removed that bra, 90% of the pain immediately disappeared. It turned out the bra itself was digging into two of the incisions made by the Plastic Surgeon. I was so relieved I told the PA he’d fixed it and Mike and I went home.

I had an appointment with Dr. Wou (the Plastic Surgeon) the next day. I told him about the E/R visit and the bra, and he told me I should have gone to the Lahey E/R (an hour from my home). I told him that was unrealistic. He also told me I didn’t need to wear the bra, or any bra if it was uncomfortable.

Dr. Wou then looked at the incisions and told me everything looked like it should but it would take a while to heal. He made another appointment to see me in a week. I had an appointment with Dr. Yang that same week and asked if he could fit me in on the same day, and he did (kind of).

Rebecca was very pleased with the outcome of the surgeries, and told me further follow-ups would be with Dr. Wou. Thus began a series of appointments which generally required waiting at least an hour. Meanwhile, the incision made by Dr. Yang was healing, but the incisions made by Dr. Wou were still open wounds. My sisters, both retired RNs, looked at the incisions and suggested I ask to see a wound specialist. When I next saw Dr. Wou I asked about seeing a wound specialist and he told me he’s the wound specialist and that doctors from around the area send their patients to him for wound healing! He said I needed to get into the shower and spray each open wound (on each breast) with water as hot as I could take it, twice a day for 15 minutes per breast, and that the wounds would eventually heal. Please note: open wounds and long-healing times were never mentioned to me during any pre-surgical discussions with him.

On the fifth or sixth appointment with Dr. Wou, in late October 2017, my husband and I waited an hour and forty-five minutes before we were called into the doctor’s office. I was given a johnny which I put on after removing my sweater and we waited for the good doctor. Twenty minutes later his nurse came in and said the doctor is running late but should be with me in 15 or 20 minutes. Twenty minutes later the nurse came in and said the same thing. After she left the room, I told my Mike I was done. I tossed off the johnny, put my sweater back on and asked Mike if he was ready to go. He was, and we walked out of the office into the hallway where Dr. Wou was talking with two nurses. When they saw us, there was a chorus of “Oh no! Don’t leave!” To which I responded: “We’ve waited more than two hours and are not going to wait any longer.” Dr. Wou came up to me and told me he’d at least like to see the incisions. I lifted my sweater and let him look. As he did so, I asked how long it would be before the open wounds would close. He told me to keep watering them and said they should be closed by the end of the year. He added he’d like to see me once they healed, and I nodded.

It turned out Dr. Wou was right: it took six months of “watering my wounds” before they finally closed, leaving new scars and one breast smaller and higher than the other. I never went back to see him.

Soon after, I got a letter from Dr. Yang letting me know she’d gotten a job in New Jersey. I’d suspected she was unhappy at Lahey, so I wasn’t surprised she was leaving, but I wasn’t sure what I was going to do without her. For nearly 18 years she’d been a trusted source of breast cancer care.

In time, I decided my breasts and I can’t take another surgery so if I get another breast cancer it’s not going to be treated in any way. I stopped taking supplements to prevent breast cancer because they obviously hadn’t worked for me. I stopped worrying about what I eat or drink or how often. I stopped thinking about breast cancer except to establish a relationship with a breast cancer surgeon who works at the hospital closest to me. I did this because if I do get another breast cancer, I’ll need someone within the system to refer me to hospice care. I was honest with the new surgeon about why I was there and, to my gratitude, she agreed without a fuss.

And that’s been my relationship with breast cancer since 2017. As I write this it’s late November, 2022, so I’ve gone 5 years without another episode. I’ve stopped getting mammograms, I’ve stopped feeling for lumps, I’ve stopped wearing a bra, I’ve had to take a (non-opioid) painkiller for chronic pain across my chest because (I’m told) Dr. Wou’s surgery pulled the cartilage between my breasts too tight and there’s nothing that can be done to fix it. I’ve also stopped worrying if I’m going to die. Of course I’m going to die and I have no say over how or when that will happen. There’s only one person responsible for the quality of my life between now and “lift off” and that’s me. So I’m focused on living as peacefully, lovingly, and happily as I can.

A Special Note To New Readers and/or Those Who Are Newly Diagnosed:

Please remember I’m 73 years old as I write this and have lived with breast cancer(s) since I was 50. It’s very possible I’ll live into my 90s! My body is unique to me. If you’ve been newly diagnosed, and especially if you’re younger than 60, don’t let my experiences — or my current approach — discourage you. And don’t panic! You have time to research the treatments prescribed for you and I urge you to do that. Most importantly, listen to your body while learning all you can about your diagnosis so your “intellectual voice” and your “gut instinct” are in alignment before you make any major treatment decisions.

The odds of surviving breast cancer can be very good. The more you know about it, the better your odds. (Honest.)

~~~

If you or a loved one are struggling with decisions about breast cancer, here are a few points I’ve learned that might help:

  • After the age of 60, the efficacy of chemotherapy is 2% or less in real numbers. Oncologists know this, but don’t tell you.
  • Radiation creates an environment that increases the risk of further breast cancer after 10 years. The doctors know this but probably won’t tell you.
  • Chemotherapy, radiation, and hormone treatments have side effects and some can be long term. Do your research before agreeing to anything.
  • After a breast cancer diagnosis there is usually no reason to rush, although the medical world might try to get you to schedule appointments with Oncologists and surgeons the same day you learn the diagnosis.
  • If it’s in you, research breast cancer and medical decisions. I started with “Dr. Susan Love’s Breast Book”, but there are many others. Two recommendations: “Your Medical Mind” and “Radical Remission”.
  • DCIS is pre-cancerous. It’s “Stage 0”. You’re not going to die of DCIS.
  • If you’re considering your doctor’s treatment recommendations, ask for summaries of studies done on other patients with similar characteristics to yours (age, race, hormone status, stage, etc.), then read them to see how well the patients did on the treatment that’s been recommended for you and take that information into account as part of your decision(s).
  • Don’t let a doctor or a loved one frighten or rush you into making a decision about your treatment(s). You have to believe in what you decide to do. Your thoughts affect your cells. (It’s true!)
  • Removing your breasts won’t remove the possibility of more (or another) breast cancer on your chest wall.
  • The medical system in the US has deteriorated to the point where patient comfort is no longer the priority it was not all that long ago. You should have an advocate or be prepared to advocate for yourself. This is easier when you listen to — and believe — what your body is telling you.
  • It’s your body. You’ll be living with your decisions for the rest of your life. And guess what? It’s your right to make your own medical decisions.
  • I wish you the courage to do what you feel is best, and to embrace whatever comes next.
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by Robin

Breast Cancer, Again

In September of 2011 I had my third breast cancer removed. In November of 2014 I learned I have a fourth breast cancer. As with each of the others, this one is different in character from the previous breast cancers I’ve had. That means it’s another “primary” breast cancer and not a “recurrence” or a “metastasis”. For reasons I don’t understand, my body makes different kinds of breast cancers. Over the years, I’ve come to learn about each one … not as well as a medical student, but enough to be reasonably educated about my treatment options and decisions.

My initial response to this news (which I got late yesterday afternoon) could be characterized as “numb”, or maybe I’m just used to it by now. I’m not frightened by it. I’m not worried or concerned about it. Based on what my breast cancer surgeon (Rebecca) told me, the tumor size is less than 1 cm (Stage 1), and it’s not aggressive. As breast cancer tumors go, it’s not much to worry about. 

But here’s the thing: this breast has now had three breast cancers and with the upcoming one, it will have had three surgeries (lumpectomies) to remove the tumors. It’s also been through radiation (first breast cancer). I’m living proof that radiation doesn’t prevent further breast cancer and skin that’s been irradiated doesn’t heal as well as normal (un-radiated) skin, so my post-surgical recovery is less than predictable. I’m hoping for the best, of course. I always do.

The above is so matter-of-fact I’d have skipped it. But in case you happen to be reading this at a time when you’re trying to decide whether to go through breast radiation, I decided to give it a mention. My best advice: learn all you can about it and (most importantly) listen to your body. My experience with radiation didn’t work out all that well for me but that doesn’t mean it won’t work for you. Do your own homework, then give a healthy dose of credence to your gut instinct.

My homework now is to try to figure out what to do about my body’s inclination to make breast cancers. Since my last “bout” in 2011 I’ve been on supplements designed to keep breast cancer away. So this news will be upsetting to my naturopathic doctor who has been my guide on supplements and inspiration for alternative treatments. I can’t say I’ve been the idyllic patient (I drink too much wine) but I haven’t been entirely irresponsible either. In truth, it doesn’t matter: the approach didn’t work. So now what? I’m sure my Naturopathic Doctor will be wondering the same thing. It’s a set-back, but I already know there’s no sure cure. How can I blame anyone for doing their best to help and it didn’t work? I can’t.

Other than the decision to go through radiation in 2001 (a decision I regret) I’ve refused all other “standard care” other than lumpectomies. That means I’ve turned down chemotherapy, Tamoxifen, Arimidex, and the like. Why? The side-effects can seriously impact quality of life even after you stop taking the drugs. I know this because I’ve searched the web and found too many women posting their stories about the experiences they’ve had with these drugs, including lingering and painful side effects for years after they’ve stopped taking them. Without consulting their doctor, many have taken themselves off the drugs. All too often I’ve read: “A life like this isn’t worth living”.

A rational reader would understandably wonder why I’d assume I’d have these negative side-effects since not all patients do. I have only one answer for that: when it comes to my health, if something rare can happen it’s going to happen to me. If you were to put me on a bell curve with other breast cancer patients, I am at the far edges of the curve: no where near the middle. Thus, even a small chance of life-long joint pain, or debilitating fatigue, isn’t worth the risk to me.

So here I go again. I’ll research what I can and listen to my body. One problem right off the bat: the medical community doesn’t follow women who refuse post-surgical care. Standard western medicine doesn’t know how many breast cancer patients have survived or died as a result of refusing chemotherapy, radiation, drugs, and/or surgery. They have little information about, or interest in, what patients are doing for themselves. That means they don’t have all the relevant information when they present findings of their clinical trials. Since they don’t track, or include, information about those of us who don’t buy their wares, their information is incomplete. More accurately: their science is incomplete.

I’m left with doing Google searches on terms for patients like me which go something like this: “65 year old with a history of four primary breast cancers”. There are many variations for this kind of search (I tried all I could think of when I was at three; researching for four won’t be easier). With luck, I might find a chat room where there’ll be a woman or two with a history similar to mine. For the most part though, this is a road I’ll need to pave for myself. So far, I’m okay with that.

by Robin

Helping Those Who’ve Been Diagnosed with Breast Cancer

As a survivor of three (now five) breast cancers, I’ve been asked by family and friends who know my history to offer help and/or guidance and/or advice to women who’ve been recently diagnosed with breast cancer and who, most often, are freaking out.

Naturally I do all I can to help but one fact has become crystal clear: every woman responds differently to hearing she has breast cancer. Some want to know just enough to get by, some just want the doctor to “fix it”, and others are voracious in their need for information. This is important to know if you’re going to try to help others on their breast cancer journey.

A quick summary of my approach to my own breast cancers

I’ve had to know everything about each of my breast cancers (all five have been different). I researched, studied, got second (and sometimes third) opinions, and based my treatment decisions on what I’d learned. I assumed the role of  “Medical Team Captain” and (honest) I interviewed the practitioners I was referred to and decided whether or not I wanted them on my team. In short, my doctors worked for me; not the other way around. That might seem arrogant or blind-sided but it has brought me peace as I’ve made my way through the difficult decisions that needed to be made. The more I knew, the more powerful I felt and the more comfortable I was with my choices.

My first breast cancer “mentoring” 

Shortly after my second breast cancer, a young woman was referred to me by a friend. The woman had already seen a surgeon and a chemotherapist and she was afraid of the surgery as well as the recommended follow-up chemo. I suggested she get a copy of Dr. Susan Love’s Breast Book which was my first guidebook for making my way through the jungle of breast cancer care. It turned out she didn’t want to read it: she just wanted to tell me how she felt and wondered aloud about what to expect.

Without having the specifics (particularly the stage at time of diagnosis), I wasn’t able to tell her much. I urged her to get a copy of the lab report from her recent biopsy and to visit me again when she had that information. I didn’t hear from her for well over two months.

Eventually, she did get back to me after she’d had a lumpectomy. Now she had a new problem: the incision wasn’t healing and it had been two months since her surgery. Her surgeon had told her to keep a compress on her breast and to wait it out. I was appalled.

I suggested she get a second opinion from another surgeon but she was afraid it would upset the surgeon she was already seeing. Two months later she contacted me again. The incision still hadn’t healed and she was still resistant to seeing another doctor. I reluctantly wound up telling her she’d be fine even though I didn’t have a clue if that was true. But it’s my belief that our thoughts affect our physical well-being so positive support made sense. Besides, what else could I do?

This was my first venture into helping another with their breast cancer, and I felt I’d failed miserably. Although I didn’t tell her this, I was shocked by her lack of concern for herself and her reliance on the surgeon. 

After giving this a lot of thought, I realized she’d come to me three times and — all three times — what she’d wanted was someone to talk with; or, more accurately, someone to listen. I’d made the mistake of thinking she wanted more.

This was a hard lesson to learn, but an important one. When another is dealing with breast cancer, they’ve got their own gut response (however nutty I might think it is) and the least I can do is respect that. Since then I’ve learned to customize my input to the genuine needs of the woman who’s asking.

How to Know What to Say or Do

When one of my cousins was diagnosed with breast cancer I reached out to her. She responded that she just wanted the doctor to “get rid of it”. I desperately wanted her to understand her treatment options and that there are no guarantees that a doctor can just “get rid of it”. I asked if she knew the results of the biopsy she’d had. She didn’t and, what’s more, she didn’t want to know. Her lack of interest in digging deeper was my guide to knowing what to tell her. She was most comfortable not knowing the nitty gritty of breast cancer so I told her the odds of her living a long and happy life were  good. This has the advantage of being true: one in three women die of breast cancer, so without knowing more than that, she had a 66% chance of surviving breast cancer. Because she wasn’t talking about it I’m still not sure what she went through. I believe she had a lumpectomy, chemotherapy, and possibly radiation. To this day I don’t know what stage she was at when she was diagnosed or any other characteristics of her tumor. It’s behind her now and that’s all she wanted. In short, knowing what to say or do is fairly easy: pay attention to what the woman is saying (or not saying) and let that be your guide.

For those who want to know all about it

One of my oldest and dearest friends was diagnosed with breast cancer last year. She phoned me shortly after she’d had a biopsy and was waiting for an appointment to see a surgeon to whom she’d been referred by the mammogram screening group she’d seen. Her mother had had breast cancer when she was in her 40s or 50s and had dealt with it by having a double mastectomy. When her mom was in her 80s, she had another breast cancer grow on her chest wall. Her mom spent the last two years of her life in pain from repeated chemotherapy treatments until her children finally stepped in and told the Oncologist “enough is enough”. My friend’s mother died a month or two later. After she died, I told my friend the effectiveness of chemotherapy declines as we age and that, in my opinion, the Oncologist who treated her mom with repeated doses of chemo had done so knowing the likelihood of success was almost nil and that her mom’s quality of life during her last months would be hindered by the side effects of his “treatment”.

The experience with her mother gave my friend a need to know more about her own diagnosis, which was why she’d called me. I was more than happy to help. I first wanted to calm her down as much as possible. Since she knew the size of the tumor was relatively small, I told her the likelihood of her living a long and healthy life was very good. I also told her she’d be joining a wonderful group of women who’ve survived breast cancer. I promised her there are blessings she’ll come to appreciate which she might not have come to know without going through breast cancer. Then I turned toward the nitty gritty and asked her to send me a copy of the lab report from her biopsy. Within a week, I got the report and saw she was at the border between Stage 2 and Stage 3, with a tumor slightly less than 2 centimeters in size. The hormone receptors were positive (more on that in a bit). From that information, I was able to tell her the treatment recommendations she’d be given would include surgery,  chemotherapy, possibly radiation, and hormone-blocking supplements such as Tamoxifen or Arimidex.

A week or so later, she called to tell me she’d seen the surgeon and had been told exactly what I’d predicted. In fact, the surgeon had told her that, as breast cancer goes, she’d gotten the best of all worlds: every treatment available would benefit her. That was my cue to more fully customize my input to meet my friend’s level of interest and need. I prefaced what I told her with a statement that she must listen to her own body and accept or reject what I told her based on her gut instinct and not on my say so or on what any doctor (or anyone else) told her. As always, I recommended she get a copy of Dr. Susan Love’s Breast Book and read it from cover to cover. I also told her to ask her doctors for summaries of studies that would support their treatment recommendations and for her to read them well, including clarifying medical terms she wasn’t familiar with so she’d understand what she was reading as much as possible.

By the time she was through with her research she’d switched surgeons twice and ended up with one who practices standard treatment of care as well as alternative treatments. She decided to have a mastectomy and reconstructive surgery and skipped all other treatments other than focusing on some changes to her diet and lifestyle and adding some supplements to her daily routine. She knows she might get breast cancer in the other breast or one on the chest wall of the reconstructed breast, but she’s comfortable with her decisions. Being comfortable with the decisions made in treating breast cancer is key to quality of life — during and after the whole ordeal. Lastly, I urged her to make plans to do something on her “bucket list” when her treatments were complete. In my case, I’d taken a cruise of the Mediterranean. In her case, she decided to move to Colorado.

A summary of what I’ve learned that may be helpful to others

I’m not a doctor who’s been trained in treating breast cancer so the information I have has been gathered by me through reading, talking with other patients and practitioners, and my own experience. I can’t guarantee that everything I claim to know is accurate. My purpose in sharing the following is to point you in directions that might be of use. You (or the patient you’re trying to help) would be wise to do your own research and consult your doctors with what you learn. You might be pleasantly surprised to find there are doctors who value well-informed patients.

  • When a tumor is caught early (at under 2cm) and the cancer hasn’t reached the lymph system, the likelihood of no recurrence (without treatment beyond having the tumor removed) is about 85%. That means there’s a 15% chance of recurrence. Under these conditions, when a patient is told that chemotherapy or radiation can cut the chance of a recurrence by half, the “50%”half” refers to 50% of 15%. In real numbers, it’s a 7.5% benefit.
  • A mastectomy doesn’t mean you’ve eliminated all possibility of having breast cancer because breast cancer can form on the chest wall.
  • A lumpectomy plus radiation offers the statistical equivalent of a mastectomy in terms of five-year disease-free survival.
  • Radiation to the breast create an environment in which another breast cancer can form about 10 years later. (This is what happened with me.)
  • Hormone treatments are believed to prevent further breast cancer for estrogen receptor positive (ER+) and progesterone receptive positive (PR+) tumors. Estrogen and progesterone are natural hormones which some breast cancers need in order to grow. You’ll know if a tumor is ER and/or PR positive by reading the lab reports from a biopsy or the surgery. You can simply ask for a copy.
  • Her2Neu is a term you’ll likely see on lab reports. It stands for “Human Epidermal Growth Factor Receptor 2”, which is a protein that adds aggressiveness to breast cancer. Herceptin is one of the current medicines recommended to prevent recurrence or metastasis of Her2Neu positive breast cancers. The five-year disease-free survival rate when using Herceptin is reportedly around 80-85%, depending on the stage and aggressiveness of the tumor.
  • A “triple negative” diagnosis means the breast cancer tumor didn’t respond to estrogen or progesterone when tested in the lab, and the Her2Neu protein wasn’t present either. In this situation, the medical world doesn’t have a clear idea of how or why the cancer developed. For this reason many practitioners feel it’s a more “dangerous” kind of breast cancer. (This information about “triple negative” was given to me by an Oncologist at Moffitt Cancer Center in Tampa, FL.) Treatment recommendations often parallel those of made for patients with E/R+, P/R+ and Her2Neu+. It doesn’t make much sense, but that’s what’s been done. My first breast cancer was triple negative. I had a lumpectomy to remove the 1.2 cm tumor followed by 33 radiation sessions. I refused chemotherapy because my gut didn’t respond well to the idea of it, and I couldn’t find studies to support the recommendation. These were treatment decisions I made based on my own research. That was over 13 years ago and I haven’t had a recurrence or metastasis of triple negative breast cancer.
  • A diagnosis of “DCIS” (Ductal Carcinoma in Situ) is Stage 0, meaning it’s pre-cancerous and it may never become an invasive cancer. It means there are cancer cells contained within a cocoon of healthy cells. Autopsies have been done on women who died of causes other than breast cancer in which DCIS was found in their breasts. These women probably had no idea they had it. As of 2013, a diagnosis of DCIS is often treated as if it were an invasive cancer. There’s a conversation going on within the medical community about whether or not this is the right thing to do. There’s even discussion to change the name of this “growth” to remove the word “carcinoma” (which means “cancer”). Some women have had a double mastectomy after a diagnosis of DCIS. If that’s what makes them most comfortable it’s the right decision for them. But it’s not necessarily the right decision for everyone. Remember, removing the breasts doesn’t guarantee there won’t be a recurrence or new breast cancer on the chest wall.
  • The most common form of breast cancer (not including DCIS) is Invasive Ductal Carcinoma (IDC): the cancer forms in the lining of a milk duct. A less common form is Invasive Lobular Carcinoma (ILC): the cancer forms in the milk glands (lobes) which are connected to the ducts. My third breast cancer was ILC, ER+, PR+, Her2Neu negative. Again, I opted for a lumpectomy and nothing more.
  • There’s a rare form of breast cancer called Inflammatory Breast Cancer (IBC). The chances of surviving this are not good using “standard treatment of care” (which is very aggressive and is what’s offered by western medical doctors). Alternative treatments may well be the best option.  
  • By the way, after my third breast cancer it made sense for me to be tested for the breast cancer genes: BRCA1 and BRCA2. Although breast cancer runs in my family, the test results were negative. There may be other gene “deformities” that contribute to breast cancer. They’re still working on it.
  • If you’ve already had surgery on one or both breasts and later opt for a mastectomy (or double mastectomy) there’s about a 25% chance that you’ll experience severe pain in your chest for the rest of your life.
  • Chemotherapy has helped many women survive breast cancer. Based on what I’ve read and observed it is most effective for younger women with E/R and P/R positive tumors. Chemotherapy doesn’t guarantee there won’t be further breast cancer particularly if the cancer has metastasized (chemo doesn’t reach the brain, so women who’ve had chemotherapy have died of “brain cancer”, which is really breast cancer that spread to the brain.
  • Tamoxifen and Arimidex have some heavy duty side effects although some women don’t feel them at all or feel them for only a short period. For those who do feel the side effects (bone and joint pain being big ones), many women switch from one drug to the other, and others stop taking the drugs entirely before the prescribed five years (often stopping within one or two years). There is some indication that once you’ve been through five years on either Tamoxifen or Arimidex, there’s an unspecified but (in my view) relatively high likelihood of a recurrence within a year or two after stopping the drug. Oncologists would likely argue with me about that and I admit I could be wrong.
  • All treatments offered under the western “standard of care” have both short- and long-term side effects. It’s worth the effort to find out what they are. Each woman knows her body better than anyone else so she also has the tools she needs to decide whether or not the treatment is worth the risk of the side-effects. Some women don’t trust themselves to do this. Those who do trust themselves tend to have better outcomes. Even doctors agree with this. In my case, what works for other patients usually won’t work for me. I fall outside the norm in almost every area of my medical history. I know this about me: I’m likely to awaken mid-surgery, or feel excruciating pain in post-op despite the fact that I’ve been given pain killers to ensure that won’t happen. So I go in advocating for the Anesthesiologists to pay close attention to my lack of response to “normal” doses of pain killers and anaesthesia. That’s just one area where my care will differ from most.
  • To get a full understanding of how side effects could impact you, Google “patient comments on _______” (insert the treatment name or drug). You want to find a site where women who’ve gone through it are posting their experiences on it. Take care to note the site’s host. If it’s a breast cancer center, you’re not likely to get completely unbiased information.
  • Some women approach their breast cancer care by completely changing their diet and lifestyle. The Gerson diet has reportedly had very good results although I knew a woman who used that approach and she died anyway. (Once breast cancer has reached the brain, the Gerson diet, like chemotherapy, doesn’t help.) A macrobiotic diet might help (this is what Steve Jobs of Apple Computer tried) and a nutrient dense diet might do the trick. Injections of a certain type of liquidized mistletoe is used in Germany, also with reportedly excellent results. There are many alternative approaches to treatment. For an introduction to some of them read the book Radical Remission.
  • If you decide to go through chemotherapy and/or radiation, you might find that acupuncture and homeopathic remedies ease the side effects. In my case the fatigue from radiation affected me after the second “dose”. By sheer luck I got an acupuncture treatment the day after that dose which restored my energy for about a week. From then on I had acupuncture weekly while going through radiation, which is how I managed to keep working during the treatment. A skilled acupuncturist is worth his or her weight in gold. If they also happen to be a talented Naturopathic Doctor (or if you can find specialists in each area) all the better.
  • In my opinion, the best way to decide which treatments to go through is to listen to — and believe — what your body is telling you. If you’re told you need chemotherapy and your body (gut) reacts negatively to that news, note the reaction then gather all the information you can. Compare the traits of your breast cancer with studies that support the doctor’s recommendation. Make sure the outcome for women similarly situated to you is beneficial. (I was given a summary of a study by the head of the Dana Farber Breast Cancer Center during my first breast cancer. He was adamant that I needed to go through chemotherapy. In fact, he was visibly upset that I’d question his knowledge and experience. When I read the summaries of two studies he gave me, I noted the results indicated that women with similar breast cancer traits to mine — who weren’t treated with chemotherapy — did better than those who got chemo. When I pointed this out to the doctor, he told me he’d run out of time to talk with me.)
  • Never let a doctor (or loved one) bully you into a treatment that doesn’t feel right or doesn’t make sense to you.
  • The medical community in the United States isn’t as organized as one would hope: chemotherapists, radiation oncologists, surgeons, researchers (and other specialists) don’t tend to mingle or share information with one another. As the patient, you might find yourself being the communication vehicle between the various departments of a breast cancer center. It’s insane, but as I write, it’s true. For more information on this there’s a well-written book called The Emperor of All Maladies, A Biography of Cancer by Siddhartha Mukherjee. It’s a big book that’s worth reading if this subject interests you.
  • There are many books about cancer, including books on listening to your body and following your instincts (Your Medical Mind is a good one). There are also surgeons who will support you even if they disagree with your decisions. These doctors are also worth their weight in gold. I’ve followed my breast cancer surgeon around since my first diagnosis in October of 2000. She’s been the ballast I’ve needed during very difficult times.

For me, the overriding guide to my treatment choices has been quality, rather than quantity, of life. I’ve seen too many women suffer the effects of chemotherapy and radiation at an age when it won’t really help them. The treatments might give them hope but invariably (if it’s a terminal diagnosis) they die right about when the doctor originally told them they would. Instead of enjoying their last months or years of their life, they spend their time in doctors’ offices, or in bed, losing their taste and sense of smell, losing control of their body’s functions, and in sum, losing their joie de vivre. Death isn’t easy when it’s protracted but it doesn’t need to be a painful existence due to treatments that do more harm than good. This is far more true for older patients than young women with breast cancer but it’s important to understand because there are doctors who financially benefit from patients who undergo chemotherapy even when the likelihood of benefit is close to zero. It’s true they’re doctors, but giving chemotherapy is one of the few ways they make their living.

Regardless of my own encouragement to women I meet who’ve been newly diagnosed with breast cancer, one in three women die of it and that statistic hasn’t significantly changed in over 50 years. No matter how many “Walks for the Cure”, no matter how many “improved” drugs and/or treatment protocols, no matter how many “breakthroughs”, one in three women diagnosed with breast cancer will die of it. When I was younger, one in ten women were projected to be diagnosed with breast cancer. In 2013, according to the American Cancer Society, it was one in eight. With the increase in treatment of DCIS — as if it were actually an invasive cancer — the number of patients who “survive” has gone up, so it might now be 1 in 12 now … but that number is padded because DCIS patients didn’t have active cancer to begin with. I stopped walking to raise funds for breast cancer when I learned these numbers. The only research group I currently support is Dr. Love’s Army of Women (http://www.armyofwomen.org/drlovefoundation).

The sad truth is that the medical community has less know-how to assure survival than one would hope. The cause of breast cancer is still unknown. The good news: if caught early, the chances of a normal and healthy life are better than most women know when they first hear the words “you’ve got breast cancer”.  If you can keep a newly diagnosed woman from panicking, and encourage her to learn more about her condition and the treatments available to her, you’ll have achieved all you can. The rest is up to her. I wish you, and those you mentor, a world of success.

by Robin

A Winding Journey

Recently I read a blog by another “breast cancer bandit” — someone who’s turned away from “standard western care” — who is forging a new life for herself and I’m not kidding: she’s changing a lot about how she spends her time, what she eats and doesn’t eat, how often she exercises, who she’s friends with, the supplements she takes, and I’ve got to assume it works for her.

Me? I’ve changed a fair amount of what I eat and don’t eat, my exercise, supplements, and the like. But I’ve changed in a more moderate way. I can say this with certainty because I just had a small, but very tasty, helping of brie and crackers … the antithesis of a nutrient dense approach to long-term survival.

The truth is, I rarely eat cheese and crackers, but I eat them. I rarely eat sweets, but I eat them, too. The only foods I appear to be able to put out of my life — pretty much entirely — is donuts and raw oysters.

The thing about this woman’s blog — the woman who’s changed her life a LOT — is that she’s quite insistent about the changes that need to be made to beat the dreaded cancer. I’ve been giving that a lot of thought, wondering why I don’t feel so compelled even though I, too, turned away from standard western care.

Let me be clear: I don’t want to pick on this girl or negate her life changes. There are women who will benefit by what she’s written. But there are woman, like me, who will wonder if we’re doing enough. And what do we really mean by “enough”? That’s how I came to write this entry.

I grew up in the white-bread 60s, when TV dinners were lapped up as if they were gourmet meals and Hamburger Helper made its way to our parents pantries. The first meal I served a guest in my first home away from parents’, was beef stew with dumplings. Back then, I thought it was classy. My mom had taught me how to make it and since this was during the “hippy years” it had the advantage of being a meal I could cook in one pot: an essential when you’re living in a garage with a single-burner hot plate.

As I got older, my tastes and cooking skills changed and (I hope) improved although I didn’t turn to organic foods until after my first diagnosis of breast cancer in 2000. Back then I thought buying organic would be all I’d need to do. In 2006, with a second (DCIS) breast “cancer”, I realized I had to be more picky about which organic foods I made (let’s just say I learned that an organic pizza isn’t any healthier for you than a non-organic one if you’re trying to ward off breast cancer). So I refined my cooking further by dropping most processed foods and turning to organic meats, dairy, grains, fruits, and nuts. By the time my third breast cancer came ’round, I panicked. All my adjustments hadn’t eliminated the underlying problem. I turned to juicing and eating nutrient dense recipes: no meats, no dairy, no processed foods, all organic veggies and fruits, whole grains, nuts, legumes, and vats of supplements.

As the year after my third breast cancer passed, I was forced to assess what I was doing because I wasn’t enjoying much of anything. The juices are fine. The veggies and fruit are great. The grains can be delicious. But so little of it was familiar. The question became a looming one: am I up for changing my entire life so the last 10, 20, or 30 years are cancer free? And, stunningly even to me, the answer is no.

After my third diagnosis of breast cancer I was convinced I’d stay with a nutrient dense diet and everything that meant. We got all the CDs and books of Dr. Joel Fuhrman, and we watched and read them all. I made recipes from his website as well as his books and I stuck with it for about three months. Then I began to stray because — and I mean no offense to the good doctor — the recipes were all tasting alike. In short, I got bored eating the same flavors over and over again. I tried different recipes looking for ones with some pizzazz, and the closest I got was his Thai Curry recipe which takes hours to make. Cruelly (for Dr. F.) I had found a recipe for Thai Curry years before which contained all nutrient dense ingredients and which took about 1/4th the time to prepare. That was the door through which I began to escape Dr. Fuhrman’s regimen.

And then came a nail I didn’t expect to hit: I read the doctor’s October 2012 post about Breast Cancer Awareness. He started with an excellent point: how many of us aren’t really aware of breast cancer? I’ve resisted “breast cancer awareness”, and the focus it gets in October. It’s as if I’m a breast cancer survivor in October and during the other months I guess everyone forgets.

In any case I liked Dr. Fuhrman’s opening comments so much that I read the whole article in which he references the results of a clinical trial in support of what he was writing. Then I did what most readers probably don’t do: I read the study he referenced and, in so doing, I found that Dr. Fuhrman had cherry-picked his “datum”. The point he was making wasn’t strengthened by the study, except it looks good within the body of the text to see reference to a study which contains the word you’re using. And that’s pretty much what he’d done. With that I lost at more belief in what the man has to say. Well … I have to admit … the fact that he charges for use of his website and tries to sell cancer patients healing products,makes him seem to me a profiteer preying on those of us looking for assurance that we’ll be alive until we die a natural death.

So I spread my wings a bit. I started to think about what diet made sense to me and which I could stay with over the long term. I’m still in the middle of this, but here’s what I’ve found:

• I have very little problem not eating red meat but I still like chicken and fish;

• I love cheese enough to keep it in my diet but I’m generally able to moderate it so I don’t eat more than several ounces a week;

• I’m not usually drawn to eggs but now and then they’re what I want (maybe once a month or less);

• I still like wine although my taste for it varies: sometimes I want it and sometimes I don’t;

• I like fresh fruit and veggie juices which hubby makes for me four or five times a week;

• I don’t react well to proceed foods so I avoid them as much as possible;

• I like salt and olive oil so they’re part of my diet;

• I tend to eat mostly vegetarian meals; and

• I eat more salads than I have traditionally but I’m still having to force myself to make them,

That’s what I’ve come up with so far other than the fact that I’m obviously not a girl who aspires for radical change in my creature comforts. For all I know the girl with the extreme diet is in her early 30s and hoping for a long and happy life with kids and all the rest. At 63 (I’s still young, I know) there’s much more in my rear-view mirror than ahead of me. This doesn’t make me sad or frightened. It’s the way things go. There’s nothing to resist or worry about. It’s all going to come to an end one day and I want to be one of those who gets to say: “I had a really great life!”

I know there are those who will disagree with, or won’t understand, my admittedly half-ass-sounding approach. But to me it’s a reflection of who I really am and the comfort in that is as close to God as I get.

by Robin

On Quality of Life and Uncertainty

There are times when I wonder — after three bouts of breast cancer — what exactly do I want to do with my uncertain future? Without fail, there’s an immediate after thought: isn’t everyone’s future uncertain? None of us know how long we’ll live, how long the loves of our lives will live, how long our career will last, how long we’ll have friends nearby, how many dinner parties might be left, how many Christmas’s, how many bucket-list items will happen, how many, how much, what if… all that.

Quality of life, it turns out, is the summation of the small things that make normalcy feel normal. It’s the comfort of “knowing” you’ll see your child again soon, or awaken to your husband’s smile, or surprising them both with blueberry pancakes. Quality of life is all those seemingly neutral events that make a ho-hum day a day you can look back on and embrace as special, or a sweet image lodged in your memory. It’s living without the constant awareness that no matter how hard you might wish otherwise, it’s all going to end. It might end piece by piece as loved ones die. It might end in an explosive disaster. The point is, it will end: it’s inevitable.

To be completely honest, there’s a great deal to be gained by denying the inevitable. You get to have those moments that make up the fabric of your life without a note on your calendar that lets you know when this or that, he or she, will end.

Living with a disease you’re told will probably cause an earlier death than you might have had is a balancing act between denial of death and grabbing each moment as fully as you can. But when kept in good balance, breast cancer can be one of the best gifts you’ll ever get.

Speaking only for me, that brings me peace.

by Robin

Sometimes, it takes time

I’ve been mulling this over for some time and finally decided to post what I’ve been mulling in case others are in the same (or similar) boat: I haven’t fully rebounded from the experiences I had at Moffitt Cancer Center in February and March of this year with an incorrect diagnosis of Inflammatory Breast Cancer.

Being wrong diagnosed with a deadly form of breast cancer triggered more emotions than I’ve experienced with any of my previous three breast cancers. For ten days I tried to absorb the fact that I’d be dead in a year or two. And at the end of that ten days the doctor who’d misdiagnosed me wasn’t willing to say she was wrong, despite all the tests that came up empty. She offered no comfort. And despite the fact that the outcome was as good as it gets for breast cancer patients, I’d been badly shaken.

When we returned to our home in New Hampshire, I had a follow-up visit with my regular breast cancer surgeon: the same woman who’s helped me through all three prior diagnoses and surgeries. She’s known me to be a well-educated patient with strong opinions about my treatments. But during the post-Moffitt meeting, I found myself telling her things I hadn’t known I’d say.

I started by telling her the Moffitt experience had broken me. I no longer had much faith in any western medicine and I’m offended by the lack of information on side effects of treatments, including the fact that a patient who’s had radiation on a breast is likely to develop another breast cancer in that same breast around 10 years later — which is exactly what happened with me.

My thinking had evolved to this: how much am I willing to change my life to prevent another breast cancer? Change my diet to such a degree I no longer eat the foods I once thought were healthy enough? Lose weight so I’m rail thin, thereby eliminating the potential danger of fat-induced estrogen which might (repeat “might”) cause another cancer, or a recurrence, or a metastasis? Take so many supplements designed to prevent cancer that they don’t all fit in my hand? Doesn’t this add up to making breast cancer a more dominant element of attention when my goal has been to live my life as normally as possible until I can’t any more?

The Moffitt experience threw me way off balance. Everything I’d learned to appreciate about breast cancer was overwhelmed by the reality that I have no power over a deadly form of it. And here’s the kicker: I’ve never wanted to “fight” breast cancer. I’ve wanted to understand it and work within that understanding to care for my body and take the blessings that come with “being a survivor” while setting aside the rest until it’s time to die of it, or whatever might happen to force my focus to dealing with it 24/7.

I told my lovely breast cancer surgeon I’m fully aware I’m at a high risk for more breast cancer. I told her that, spiritually, I’m okay with the idea of dying from it. I’m at peace with that … although as I said it I reached to touch my husband — who is always at my side during these appointments — and added “Of course, I don’t want to leave my husband”… and with that I began to cry. I looked up at the ceiling as I talked through my tears, trying to reassure my surgeon (and me) that I’d be okay. When I turned to look at her, she was crying too.

I’d done a lot of homework before that appointment. I’d learned that women who’ve had surgery on their breasts before they have mastectomies are at a high risk of living in pain across their chest (or around their entire chest and back) for the rest of their lives. Because of this, I’d ruled that option out. To my surprise and relief my surgeon agreed.

I’d read more about Arimidex and Tamoxifen and their side effects which, in my case, would compound already existing and painful conditions. I wanted to rely on dietary changes and nothing more. Again, she agreed.

I wasn’t sure I wanted more mammograms although I wanted to follow up with her on a routine basis. I mentioned the possibility of thermography rather than mammograms. She told me she’s not trained in reading thermography scans but that she’d try if that’s what I wanted.

And then she something like this:

“Look at you: you’ve had three primary breast cancers and you’re still here. You’re healthy. You obviously know your body better than anyone. You also know as much about breast cancer as any patient I’ve had and you think well with the subject. So far it’s working. So far, you’re beating it. Keep doing what you’re doing.”

We discussed what would happen if I was diagnosed with yet another breast cancer. I told her if it was confined to my breast, I’d want it surgically removed with no further western treatments. She agreed. I asked how I’d know if breast cancer spread to other parts of my body and she told me that the last breast cancer I had (Invasive Lobular Carcinoma) often goes to the bones. She said it would be an aching that doesn’t go away. I’d also read it can go to the pancreas, which I mentioned, and she said “that too”. I told her I felt I should develop a relationship with a pain specialist before I need that kind of care. I have such a high tolerance for pain killers that Anesthesiologists are wary of how much I need. She thought it was a very good idea to cover that base beforehand.

We reached a new level of understanding with one another and, I believe, a mutual respect for what we each bring to my care. I left that day feeling something profound had happened although I wasn’t sure what. At the very least I knew I had a breast cancer surgeon who’s truly on my side.

After a few weeks thought I decided that — to date — my breast cancers have been found (and in one case confirmed) via mammograms and were then removed by my surgeon. I decided that part of my care wasn’t broken so why fix it? I scheduled a mammogram for late October of this year. I don’t dread it. Mammograms have been a helpful tool that’s probably saved my life a few times. There are other tools which may well be safer. Call me a traditionalist but I’m not going to switch tools now.

With my future breast cancer care more-or-less planned, you’d think I’d have been free to live by my own best lights: some changes in diet, exercise as best I can, laughter as often as possible, a life full of activities and people I love.

Instead, I’ve withdrawn more than I expected. Part of that is physical. Both my knees are in need of replacing (no cartilage in the left and very little in the right) so it’s hard to walk which makes physical exercise almost an exercise in futility. But here’s where the failure to rebound comes in: do I spend the time, money, and agony of knee replacements if I’m at a high risk of dying of breast cancer in the not too distant future? Do I get the expensive dental work I need to replace a tooth I lost years ago which affects my smile? To lift a line from the movie “The Best Exotic Marigold Hotel” (highly recommended) do I even bother buying green bananas?

The “futility factor” had never been part of my thinking until the Moffitt experience. The doctor there was wrong, wrong, wrong … in more ways than one. But she managed to instill in me a sense of doubt. And although I’m solely responsible for my thoughts, I find myself stumbling over and over again into “why bother… is it worth it?” The Mofitt doctor took (or, more accurately, I gave it away and can’t get it back) my sense of unmitigated optimism for whatever time I have left. Put in the simplest of terms, do I have a glass of dry white wine with brie and crackers? Or do I drink my freshly made veggie juice? (My answer so far: a little of both but less of the wine and brie than before.)

My optimism, which had never been fully shaken, got fully shaken. I’ve been working on regaining it and that’s harder than I could have imagined. Its loss is also deeper than I’d have imagined.

I’m still waiting to rebound. Don’t be too discouraged: I have a good life. But I’m missing the entirety of one of my strongest traits. Still, I’m working on it, so my optimism isn’t entirely gone, is it?

by Robin

A Clarification

Over the last month or so, too many of my friends have wondered if I have cancer now. Sometimes my own writing trips me up: I didn’t intend to leave anyone wondering.

The tests I had at Moffitt were thorough. I don’t have breast cancer in either breast, and I don’t have cancer that’s spread. So I don’t have cancer. If you were worried, I’d like to apologize.

To be fair to the factual side of me, breast cancer takes a long time to grow. It can be moving along, un-noticed and invisible, for 10 to 20 years before you’ll find out you’ve got it. With that little factoid in the back of my mind I know I might have cancer growing somewhere, but so could you and all of our friends and family combined. So why even think about it? If it comes up, you (and I) will deal with it by doing what seems right at the time.

The experience I had earlier this year at Moffitt was what happens when a patient is given the wrong diagnosis and is left thinking she’s got a year or two left to live. It’s not a comfortable place to be. But don’t skim over the fact that the doctor was wrong. I didn’t have an aggressive and deadly form of breast cancer. I didn’t even have cancer. The “cancerous tumor” the doctor felt in my breast was really a sack of fluid that had collected after the surgery I had in September of 2011. That’s all it was.

So…. I don’t have cancer and I won’t ever have it again, unless it happens to show up. And then I’ll deal with it.

Better?

by Robin

Regaining Control and a Moffitt Redemption…(almost)

One of the most useful things I’ve learned about having breast cancer is that I deal with it best when I have control of my medical decisions. My approach involves a lot of research on my part, and it includes giving myself the right to decide who’s on my medical team.

My experience at Moffitt got off to a bad start because I was diagnosed with Inflammatory Breast Cancer (“IBC”) which is a type of breast cancer I knew little about. And then, before I had a chance to fill the information void, I was told IBC is so aggressive that the only way to fight it is quickly and very aggressively. The standard treatment is chemotherapy followed by a mastectomy, then radiation, and then more chemotherapy. Those treatments happen to be ones I’ve refused in the past based on quality of life issues. I’m a patient who values quality over quantity. In the medical journals you’ll see a lot of references to 5-year disease free survival but there’s no measurement (or mention) of quality of life other than the term “disease-free”. Please note: “disease-free” doesn’t mean “side-effect free”.

If you’ve read my prior posts, you (hopefully) know the IBC diagnosis was wrong and the doctor who made that diagnosis (Dr. K.) didn’t have the decency to use the words “good news” when she shared the test results which didn’t support her diagnosis. Instead, she sent me off with warnings about the redness on my breast and what it would mean if the antibiotics she was prescribing  didn’t change the size of the red area. That piece of news ruined the antibiotic treatment time (10 days) because my attention was so focused on the redness. Had it changed? Had it changed enough? Toss in an allergic reaction to the antibiotic itself and the entire experience with Dr. K. was a bust (no pun intended).

I was told I had Inflammatory Breast Cancer on 2/24/2012. I didn’t regain at least some sense of control until 3 weeks laster when I emailed Dr. K to let her know I wouldn’t be working with her any longer. In other words, I fired her.

I know there are women who would never consider firing a doctor. In my world, I choose the doctors I want on my medical team, of which I happen to be the captain. The doctors work for me, not the other way around. When a doctor causes more angst than not I don’t consider them a team player. And thus Dr. K. is no longer on my roster.

I was, however, pleasantly surprised during my last visit to Moffitt when I met with a chemo-oncologist, who I’ll call Dr. O. (The word “oncologist” applies to doctors who specialize in chemotherapy as well those who specialize in radiation, so I distinguish between the two.)

A little background before I fill you in on Dr. O:

I met with two oncologists after my first breast cancer surgery. The first became upset when I told him the benefit from chemotherapy (which I understood to be about 6% for me) wasn’t enough to justify going through it. His face got red and his voice got loud when he insisted I’d get a 10% benefit. I still didn’t like the odds. What I didn’t know then was that there was only a 15% chance of me getting breast cancer again anyway, so his 10% benefit was really 10% of 15%, which is 1.5%. So, for less than 2% actual benefit, the chemo-oncologist was nearly beating his fists on his desk. I told him I wanted a second opinion.

I wound up at Dana Farber in Boston where I met with “the big guy”. I hadn’t asked to meet with him: maybe he was the only one with free time. Who knows? But the staff at his clinic told me he was “the guy to talk with”. As it turned out … in my case … not so much. He was emphatic that I go through chemo because I’d “be dead in 5 years” if  I didn’t. I asked for summaries of the studies that supported his recommendation and he was visibly offended although he asked his assistant to get me two study summaries. When I reviewed those summaries, I noted that patients with characteristics similar to mine (age, cancer stage and type, etc.) had done better without chemo. When I pointed that out to him he told me he didn’t have any more time to for me. So I skipped chemo.

Given my experience, talking with chemo-oncologists about what they have to offer has been off my list-of-things-to-do for many years. That changed when I read the book The Emperor of All Maladies by Dr. Siddhartha Mukherjee, a chemo-oncologist. Dr. Mukherjee is clearly a doctor who cares about his subject and the well-being of his patients. He also has the decency to admit that the medical world doesn’t have a thorough grasp of cancer. There are cures for some types, which is wonderful. But the hunt is still on for other types of cancers, breast cancer among them. You can get all the treatment in the world and still have about a 30% chance of dying from it.

After my last breast cancer in September 2011, my surgeon encouraged me to meet with an oncologist. I hadn’t read Mukherjee’s book yet so I told her I wouldn’t do it. Waste of time. But then I read his book and, soon thereafter, an oncologist practically fell in my lap as part of the Moffitt process.

I decided I’d use the opportunity to meet with Moffit’s chemo-oncologist to better understand the various theories of how breast cancer originates and travels, and to share my own theory which I formed as a result of what my body seems to be telling me. Dr. O is young enough to be my daughter, with an easy communication style that’s open to give and take. I was as willing to listen to her as she was to me (a genuine relief). I described my theory to Dr. O by telling her it feels like a cell is given the message to go to the breast and grow with reckless abandon. According to Dr. O my theory has a name: “stem cell theory”. Using this line of reasoning, if I’d had a mastectomy after my first breast cancer (in the left breast), I wouldn’t have gotten the second breast cancer in the left breast. The second breast cancer was Invasive Lobular Carcinoma (“ILC”). If I’d had the breast removed 11 years earlier, there wouldn’t have been any lobe in which the ILC could form.

As it turned out, Dr. O wasn’t very concerned about the diagnosis of IBC (she admitted the diagnosis was “probably 98.9% wrong”). Instead, she was far more worried about the ILC I’d had surgically removed in September. ILC tends to occur bilaterally (meaning it’s likely to show up in my right breast), and it metastasizes in a sneaky way, making it hard to know about until it’s at Stage IV (worst case). Dr. O told me that, in her opinion, I have two options: a double mastectomy or Tamoxifen. She recommended tamoxifen rather than a newer hormonal drug (Arimidex) because the side effects of Arimidex would be very difficult for my body and she felt I’d tolerate Tamoxifen just fine. I told her I’d research them both and would give it serious thought.

While I was at Moffitt for the appointment with Dr. O, the Clinic Manager also teamed me up with two other doctors to help me resolve some outstanding questions about the fluid in my left breast and the antibiotic treatment I’d been given. I left feeling Moffitt had redeemed itself.

My first branch of research was to find out what had been learned about Tamoxifen since I’d last read about it many years earlier. I should note that my research always involves reading as many summaries as I can find of clinical trials that would apply to me and reading websites where other patients (mostly women) post about their experiences with each treatment. Two things jumped out about Tamoxifen: 1) it appears to be less effective than Arimidex; and 2) it has some nasty side effects including frequent hot flashes, trouble sleeping, blood clots, bone and/or joint pain, and some others which are rare but beyond-the-pale. Knowing the side effects was the first bit of information I needed. Next I needed to know the statistics about Tamoxifen’s efficacy so I could weigh the risks against the benefits. Well, finding the efficacy of Tamoxifen — for a person with my history — is like looking for a needle in a haystack. I read the absolute benefit was as low as 2% and as high as 50%. Getting at a realistic number for me to use was going to take years. I decided to email Dr. O to ask for her best estimates. I made it as simple as I could:

If I don’t take Tamoxifen:

— Percentage likelihood of ILC in the right breast? Percentage likelihood of recurrent ILC in left breast?

If I do take Tamoxifen:

— Percentage likelihood of ILC in the right breast? Percentage likelihood of recurrent ILC in left breast?

And does Tamoxifen prevent metastases (I couldn’t tell from what I was able to find).

That was on Tuesday. It’s now Friday. I haven’t heard from Dr. O. So Moffitt’s redemption is incomplete.

While waiting for Dr. O, I switched my research to mastectomies, which I’d also studied before but wanted current data. This time I came across a site I hadn’t run into although you’d think I would have: CancerCompass.com. On this site is a long thread (100+ posts) on post mastectomy pain syndrome. I won’t weigh this down with too many details except that the likelihood of having excruciating chronic (life-long) pain after a mastectomy is about 24% and you’re more likely to get this pain if you’ve had breast cancer surgery before you have a mastectomy. Lucky me.

Despite my change in attitude toward chemo-oncologists (or at least some of them) my research is showing me (yet again) that the quality of life of breast cancer treatments can be crippling. Some women are willing to live with that. I’m not one of them. For one thing I don’t like pain. For another, and more importantly, I don’t like the idea of living in pain when it might not make any difference in my overall survival. I’m not here forever anyway. I long ago made up my mind to enjoy my life. Why change that policy now?

As with each episode I’ve had with breast cancer I’ve arrived at alternative approaches to living as a breast cancer survivor. There are a lot of us. It’s interesting (to me anyway) that the medical world doesn’t have a clue about what we’re doing and how it’s working. Depending on who you speak with, when you “go rogue” you’re either being stupid, stubborn, misguided, or courageous. For me it’s simply a matter of being as honest with myself as possible, then making choices that make the most sense.

Given where the medical world is with breast cancer, it seems reasonable to walk away from “standard of care” when there are no guarantees and, worse, there are side effects that could impact your life in ways you’d hate … and in ways you couldn’t know abut unless you research outside the confines of websites funded by pharmaceuticals or other medical special interest (look closely at who owns the site).

For me, for now, I’m back to diet and lifestyle changes as my best bet for a good life, no matter how long it lasts. My next research project is pain management, since it’s possible I’ll need it at some point. Until then, onward!

Update as of 9/8/2012: Dr. O never responded to my questions about Tamoxifen. So Moffitt’s redemption was short lived.

by Robin

A Not-So-Hot Moffitt Cancer Center Experience

Moffitt Cancer Center is a NCI facility that uses multi-disciplinary experts to oversee each case. That means the results of appointments and tests I had last week were reviewed by a “Medical Team” (Surgeons, Radiologists, Oncologists, and I’m not sure who else). Do you see the missing ingredient in this set-up? The patient isn’t invited to the meetings about his or her care. In any case, this is their way of providing their best. And, since the Women’s Oncology Center is its “own little world” (their words, not mine) everyone knows what’s happening with every patient. Well! That sounds perfect and it probably is when it works. In my case it hasn’t worked well at all.

Let me summarize, and if you want the details, just keep on reading:

1. I had an initial meeting with a breast cancer surgeon at Moffitt who, after a physical exam, told me it’s highly likely I have Inflammatory Breast Cancer (“IBC”) — an aggressive and deadly form of breast cancer. In fact, she said my breast looked like a “text book case” of IBC.

2. I had to wait five days before any tests could be made to validate or repudiate the surgeon’s diagnosis.

3. I had to wait two hours for an ultrasound on the fifth day because the surgeon’s directions were either unclear or the radiologist didn’t see any point in an ultrasound (I got two different stories from two different members of the staff). As it happened, the surgeon was in the O/R, so we were all waiting for her to clarify or revise what she’d ordered. My husband, who’d been in the waiting room all this time, finally decided to find out what was going on. He found the surgeon’s nurse who casually mentioned “there’s no tumor in the breast”. My husband, not liking how casual this information was provided, called for the Clinic Manager, who then arranged for the radiologist to show and explain the scans to us. That’s when I first learned I might not have IBC.

4. I had to wait 36 hours before the last two tests were done (on a Friday).

5. I was scheduled to see the surgeon on the Tuesday following Friday’s tests. Evidently, the surgeon saw no point in picking up the phone to let me know the test results which, as it turned out, showed no cancer in my breast or elsewhere.

6. Rather than wait until Tuesday, I called the surgeon’s nurse on Monday morning to find out if the results of the tests were known. Yes they were: there were no signs of tumors or metastases. Instead, the left breast had a large sac filled with fluid which needed to be drained. The draining would be done the next day after I met with the surgeon, so “bring a sturdy bra”.

7. The second appointment with the surgeon was not a “give-and-take” discussion. In fact, it felt like an effort by the surgeon to keep the diagnosis of IBC alive. She mentioned the need for additional scans because there were suspicious areas in my lower back and lungs. There are more details on this but to give you an idea of her focus, she drew a line around the redness on my breast and told us the redness would change in size if the antibiotics she was going to prescribe actually worked, adding “if the red area remains the same, that’s how IBC behaves”. I honestly believe she’d feel redeemed if the redness doesn’t change so she can go to the Medical Team and say “I told you so.” I didn’t bring this thought with me into her office, but I left with it.

8. I had to check in twice to the same facility on the same day because the appointments were three hours apart. (I’d been checked into Moffitt just once on for appointment the previous week, and they were four hours apart and in two different buildings.) No explanation.

9. My appointment to have the ultrasound/fluid drainage was cancelled and it took 10-15 minutes to reschedule me, with no explanation of what happened or why.

10. The breast cancer surgeon mentioned wanting me to see an Oncologist but didn’t give me the name of who she’d refer me to, nor did she let me know she was going ahead with the referral.

11. I had to initiate checking out of the clinic and scheduling my next appointments.

12. The schedule I was given had a follow-up appointment with the surgeon and a doctor I’d never heard of.

13. During checkout, I had to push for appointments for an MRI and CT scan, per the surgeon’s comments about my lower back and lungs.

14. When the surgeon’s nurse finally got the order for an MRI, she told me the CT scan for my lungs wasn’t really needed and that the recommendation had simply been to keep an eye on it.

15. There was no way to schedule a follow-up visit with the radiologist who’d drained the fluid (and who’d told me I’d likely need to have drainage done several times more) because the surgeon would need to order that when it was needed. The “team approach” appears to apply in meetings but not in real time.

16. My husband and I left Moffitt yesterday (after the fluid was drained) and I told him I felt as if I’d been thrown against a cement wall, bounced back, thrown into the wall again, bounced back again, thrown into the wall again, and didn’t feel I had much bounce left in me.

For the full “unmasking” of care (in my case) at Moffitt Cancer Center, read on. You’ll note I don’t mention any staff member by name. That’s because the surgeon might be a wonderful ally and partner for other women (and I hope she is), and the same is so for other staff. This is the story of what happened with me, and shouldn’t impact the experience others have had at Moffitt.

~~~~ The full story ~~~~

To be fair, no one is a good fit for everyone. That’s the kindest way I can frame the relationship between me and the breast cancer surgeon I’ve been seeing at Moffitt.

The test results don’t support the surgeon’s initial diagnosis of Inflammatory Breast Cancer, so — after she knew the test results — I expected her to enter the room with a “Great news!” approach. But that wasn’t to be. It went more like this: a friendly, professionally distant smile and handshake, which translated in my world as “you’re just another patient so let’s get down to business”. Not even a hint of champagne or confetti.

She told me what I’d already managed to learn from others (no sign of IBC or metastases; I’d have the fluid drained and be put on antibiotics). I’d gotten this information by taking as many back doors as I could find. Waiting for test results is too uncomfortable to wait even longer just so you’ll hear it from the “right person”. Why didn’t the “right person” know that a patient who’s been told she probably has IBC is waiting for the phone to ring to confirm or deny the diagnosis?

After the surgeon officially shared the news that the imaging scans were negative for cancer, she went on to tell me the bone density scan showed some “uptake” in my lower back (the bone absorbed some dye I’d been given prior to the scan). “The Medical Team” wants to get a more magnified (MRI) image of this because there could be cancer there. (I’ve had osteoarthritis in my lower back for years, diagnosed in 2008 via an MRI, so I’m betting on that as the outcome.) She also said there are small spots on both my lungs which should be followed. So much for celebrating any good news.

The surgeon wanted to take a sample of a swollen lymph node to make sure there was no cancer in it, and she wanted a sample of the skin on my breast to make sure there was no cancer there either. And “the Team” wants me to see a Chemotherapist. Most curiously, she added that I could still have IBC but, for now, “it’ll be treated as an infection, with antibiotics”. The message I was getting is this: “I haven’t found proof of IBC yet, but I haven’t given up”. This could be a good or bad thing for a doctor to do: if she really wants to make sure I don’t have IBC she should keep looking. But she’d be wiser to keep this to herself at a time when the patient has been given enough good news to renew her hope.

I’d already decided to let the surgeon know that — by telling me a week earlier that I had a “text book case of IBC” — I’d been through some very difficult days. She’d already explained her reasoning for giving me the worst-case scenario (to prepare me), and I wanted her to know her approach can have unnecessary and painful consequences. But I wasn’t able to tell her that although I tried. She feels it’s the best approach. Mind made up. No room for feedback.

NOTE: from the research I’d done before this second meeting with the her, I learned that IBC is often misdiagnosed, usually as an infection rather than the deadly form of cancer it is. It’s evidently known to be difficult to diagnose. Given that, how could she have been so sure I had “textbook IBC” after a physical exam only?

I reminded her that I’m the kind of patient who does a lot of research which I’d been doing on the web about IBC and other causes of redness and tenderness of the breast. She said (and I paraphrase): “Uou have to be careful about what you read on the web: it doesn’t tell you everything.” So I told her about just one of the (many) experiences I’ve had — in person — with doctors who don’t tell you everything either. Oh yes she understood that, said she, adding that even she uses the web to do research. I realized I had no chance of getting anywhere with her.

She was obviously fulfilling the “things-to-do-with-Robin” list, formed by “the Medical Team”. Every step falls within the “standard of care” which can be a roadblock for clinicians because they can get caught in one way of approaching things and thereby miss seeing other approaches (two references off the top: The Emperor of All Maladies; and End of Illness.) The surgeon practices within the boundaries of the “standard care” and anything beyond that is outside her scope. Unfortunately for both of us, I tend to go beyond the boundaries, almost always.

I’d already reasoned the following before I entered her office: If I have an infection then the “puffy” lymph node (found on a previous ultrasound) is likely enlarged because of the infection and, if that’s the case, it’s premature to biopsy it for cancer. So when she brought that up, I told her I wanted to wait and why. She agreed with my reasoning. At last some common ground.

Her nurse went off to let the radiation staff know I wouldn’t be having the lymph node biopsy, although it was understood I’d be having an ultrasound later that day to guide a radiologist in draining the fluid from the breast.

As for seeing a Chemotherapist, I agreed to that, but suggested it would be more productive if I saw someone who’s open to alternative approaches. I don’t believe in chemotherapy or in hormonal treatments for my body. These beliefs are based on several things: the statistics on disease-free survival over five years — and what can happen in the sixth year for a woman my age and with my history; the side effects, and (most importantly) my body has given me clear messages that it’s not the right path for me. I added that I didn’t want to waste the Oncologist’s time. She nodded.

Then, for reasons I still don’t comprehend, she told me my situation is a troublesome one because I’ve had three recurrences of breast cancer and that suggests an underlying problem we need to get at. I agreed with her about the underlying problem, and my situation being troublesome, but (said I) “I haven’t had any recurrences. I’ve had three primary breast cancers.” My husband, who joins me always for appointments like these, asked if we have different definitions of “recurrence”, which gave me a new direction to try: “If I misunderstand the difference between primary and recurrence, please let me know.” But that didn’t happen. Instead, she said: “You’ve had three cancers and that’s cause for concern”. Well, duh.

It was around this time when the doctor launched into a mini-lecture which I’d hear again later that day (almost word-for-word from another practitioner): “We’re not here to make money. We don’t make recommendations to increase our profits. We’re here to help you get better, and we’re not going to force you to do anything you don’t want to do. We form a partnership with each of our patients so you’re comfortable with your care.”

Well-pick-my-jaw-up-from-the-floor: my new partner first scared the shit out of me, then didn’t offer an apology (or even an “oops”) and, instead, made sure I understood I could still be very ill. Call me hasty, but that’s the kind of partner I want to divorce. No offense: no one is well suited for everyone.

I asked if she’d automatically forward her notes, the scans, and lab results to my surgeon in Massachusetts. She told me I hadn’t given directions to do so, so no that hadn’t been arranged. I reminded her that I’d given her a five-page summary of my medical history (including doctors, their addresses, and phone numbers), and that next to my Massachusetts  surgeon’s name I’d written and highlighted a section that said “Please send copies of all your notes, scans, and pathology reports to this doctor.” It turns out that information didn’t make it into my patient file or into their computer system, so I’d need to go to medical records to sign a release.

The surgeon looked in her file several times, assumably for test results or recommendations from “the Team”, and she quickly made notes now and then which is probably why I didn’t see her write out a prescription for antibiotics and hand it to my husband without telling me about it. I had to ask when I’d get the prescription and when I’d start taking them. “Today” she said. “I’ve given the prescription to your husband.”

NOTE: when I learned my husband had the prescription, I was confused. Why had the nurse told me the day before (over the phone) that the fluid would first be looked at in a lab to find the antibiotic that would be most effective. Given this, I figured the antibiotic prescription would be called in to our nearby pharmacy once the right antibiotic had been determined. I didn’t even try to bring up the conflicting stories. It was obviously not an environment for expressing my thoughts or concerns.

In retrospect I should have pressed the same argument against taking a biopsy of the skin on my breast as I’d used for the lymph node biopsy, but I was wanting to be as cooperative as I could be so I agreed to let the doctor take a sample of skin from my breast so it could be biopsied. Since her nurse hadn’t yet returned from telling radiology the lymph node biopsy was off, the surgeon didn’t have the right container to put the removed skin sample in. She looked around and placed the piece of skin into an open plastic container which had been sterile a minute or two earlier when she removed an instrument from it. I don’t know enough about sterilization to know if it’s wise to place a skin sample in a container that had been used for something else, but she clearly needed to put it somewhere.

She put in a stitch at the biopsy site and then told me not to go into a pool, hot tub, or soak in a bath that covers my breasts for the entire time I’m on antibiotics (two weeks). Another jaw-on-the-floor moment. Before she’d taken the tissue from my breast, she knew my husband and I had plans for a cruise next week. Does a true partner withhold information that will prevent full enjoyment of a cruise until after she’s taken irreversible action … an action which could easily have been delayed until after the cruise? I don’t think so. Divorce is getting closer.

The nurse finally made her way back to the office, with containers for the skin sample and news that radiology would try to fit me in closer to 1:00 than the previously scheduled 2:00. They were able to do this because we wouldn’t be doing both the lymph node biopsy and the ultrasound drainage. The surgeon and nurse suggested Mike and I go to lunch and come back a bit before 1:00, which is what we did. By the way, if you’re looking for the cafeteria at Moffitt Cancer Center by following the signs, you could wind up almost anywhere. Ask someone wearing a Moffitt badge to direct you (the cafeteria is in the basement).

After lunch we had some time to kill so we decided to go to the Medical Records department and sign the release the surgeon had told me I’d need to sign. If you’re looking for the Medical Records department at Moffitt Cancer Center by following the signs, you’ll wind up at a desk where a young woman is signing people up for blood draws. We asked where we’d find Medical Records and she said, without blinking an eye: “Oh, we don’t have a Medical Records department anymore. You have to go to the information desk and fill out a release, then drop it in the box.” And that’s what we did. By this time I’d decided that rather than have the files sent to my surgeon in Massachusetts, I’d have them sent to my home. I no longer trust Moffitt’s communication system and want to know that the records arrive and are complete.

Stepping back into the “Women’s Oncology Center” at Moffitt at quarter to 1:00, the receptionist told me my ultrasound had been cancelled. I don’t have a word to express my feeling at that time so I’ll use “stunned” and hope you get the gist. It took 10–15 minutes to get me back on the schedule, with no explanation of what happened or why.

I had to sign in again (I don’t know why I had to sign in twice, but I did). When I met with the input staff member, I asked if any follow-up or further appointments had been scheduled for me. She told me I had a follow-up appointment with the breast cancer surgeon but that was it. I said: “Well, the surgeon mentioned me getting another MRI, a scan of my lungs, and a meeting with an Oncologist. Doesn’t it make sense to do these on the same day?” The girl at check-in agreed and went to find the surgeon’s nurse. When she came back she told me to tell the radiology staff — where I’d be getting the ultrasound/fluid drainage as my last appointment for the day — that I’d need to go through checkout to make the necessary appointments. I asked “Do you mean it’s my job to push for appointments that the doctor recommends?” She said “yes”, adding “hopefully by the time you check out, the orders will be here.” (Even if you don’t skip ahead, your gut instinct about whether or not the orders were there is probably right.)

At 1:40, I was called in for the ultrasound/fluid draining (great timing considering the prior cancellation). The assistant who got me set-up mentioned that the radiologist would just be taking a sample of the fluid which would be sent off to the lab. I understood that part, but I thought he’d be taking all the fluid before I left. As mentioned above, in my world the surgeon would phone our pharmacy once the lab had tested the fluid for the right antibiotic, but my world and Moffitt’s are clearly a misfit. The assistant told me the radiologist would arrive any moment and he’d fill me in on what would be happening.

The radiologist turned out to be the friendliest, most open practitioner I’ve met so far at Moffitt. He was engaging, reassuring, and transparent. His first comment: “There’s not a problem with that lymph node … I wouldn’t touch it.” (Hurrah!) Next he told me I have a very common post surgical complication, although the sac of fluid is larger than most and it will probably fill up again and, therefore, several aspirations will likely be needed before it stops filling up. “We can always fit you in for that” he said.

And then he gave me the second mini-lecture on the fact that Moffitt doesn’t make any money by doing these procedures; they’re here to treat the patient with as much care as needed and are not trying to make a profit by doing things that don’t need to be done. I liked him anyway so I didn’t hold it against him, but it struck me as odd that two doctors had now told me the same thing. Is this patter they’re trained to say? If so, why? Is it connected to the rumor going around the facility (heard by me from a nurse) that Moffitt, like other large medical centers, is likely to announce a layoff in the not too distant future? And aren’t these layoffs connected to profits?

When the radiologist drained the fluid, he told me it didn’t look infected much (if any), and that the redness on my breast was my body’s effort to try to resolve the problematic sac of fluid. When the drainage was done, the breast was considerably smaller, and the tenderness was (and remains) minimal. I was told I’d be given a special bra to hold the breast tightly and then he shook my hand, gave me a genuine smile, and left.

His assistant (who’s upbeat and friendly) brought me what looks and feels like a corset. I asked her why the nurse had told me to bring my own “sturdy bra” when they had these other things? She didn’t have an answer. I said it seems to me no one knows what the others are doing in this place. She shrugged. Finally, proof that my memory is still intact, I told her I needed to go through the check out process, and she ushered me to the check out waiting area.

Given that the surgeon had now had plenty of time to work up orders for additional tests she’d mentioned that morning, I figured the check out lady would have all the information she needed by the time I reached her desk. She didn’t. All she had was a follow-up appointment with the surgeon and another appointment a half hour later with a doctor I’d never heard of who was listed on the schedule sheet by name, followed by “MD”. All I could figure was that the surgeon I’d been seeing might be out that day so this was a back-up appointment with another surgeon, just in case…??

As luck would have it, the surgeon’s nurse was nearby so we asked her about the unknown doctor and the missing orders for tests. The nurse told us the heretofore unknown doctor was an Oncologist, and that no further tests had been ordered. Why? “Welllllll…..” she began…and I lost it: “I’ve been caught in some very bad scheduling here, including having the ultrasound cancelled today…” I began. The nurse interrupted: “Radiology did that, not me.” (This is a “team” approach?) I ranted a bit more about the logistics of my situation, my health issues, and my feeling that I don’t seem to fit in their system and it’s disconcerting.

The nurse agreed to find the surgeon and ask her about the other tests she’d mentioned that morning. So we waited, and the check out girl got visibly annoyed: arms folded across her chest, frown on her face, and (curtly): “Is there something you need me to explain?” We sat in silence until the nurse returned.

The nurse reappeared with the news that the other tests hadn’t been scheduled because that would be the job of the Oncologist. I reminded the nurse that we have to travel an hour each way to get to and from Moffitt, so if we could get the tests done in one day (which seemed doable with the two-week advance notice we had), it would make it a whole lot easier on us. The nurse said she’d have to go back to ask the surgeon about that but — lucky thing! — the Oncologist was in the room right next to the surgeon’s office! (Is that great or what?!)

We waited again.

When the nurse came back (with a big smile) she had an order for an MRI of my lower back on the day we’d next be at Moffitt. She added that the recommendation to re-scan my lungs really wasn’t necessary at this time. It was simply a suggestion from “the Team” that it be followed. She added it’s not uncommon to see the kinds of small spots that were on my scan. Why hadn’t the surgeon told me this earlier in the morning? Why has this been such an unpleasant experience at an institution that’s considered to be so good?

In my opinion, Moffitt has adopted a “breast cancer boutique” approach to treating breast cancer. Note there was no suggestion of a second opinion (I already had it covered because I’d sent a photo of the redness to my surgeon in Massachusetts before I ever stepped foot on Moffit’s campus) but it wasn’t mentioned). Note I wasn’t consulted about the Oncologist to whom I was being referred. I wasn’t even told I was being scheduled to see him or her). Note that I was told two plans for what kind of antibiotic I’d be getting. It’s as if the nurse and surgeon don’t even talk to one another. Note that the surgeon didn’t tell me the spots on my lungs are common but her nurse later did. Note the differing opinions given to me by the surgeon, two radiologists, and the surgeon’s nursem which prompts an obvious question: is the Medical Team a competitive rather than  synergistic group of specialists?

Now, what do I do with all this? Well, first of all, I’ve washed off the ink line the surgeon drew on my breast so I could ss if the redness was shrinking. I won’t let her scare me any longer. Secondly, I’ll get over it. If I ever have to go to Moffitt again I’ll ask for a different surgeon because this one and I haven’t bonded and, at this point in my medical journey, I need a partnership with the surgeon. My surgeon in Massachusetts doesn’t agree with every decision I’ve made but she’s rooting for me anyway. That’s a team player.

If, in the unlikely event I DO have IBC, I’ll likely get palliative treatment rather than anything else (probably hyperthermia which, in case you might need to know this, is offered at Tufts in Boston).

My focus remains on the quality of my life, not the quantity. I have more to write about that but, for now, the frustrations with Moffitt and similar centers, leads me to speak out about the state of affairs from the point of view of a patient who doesn’t fit neatly into a “boutique” system, and therefore does a lot of homework to fill the gaps. What’s happened with my body over the last 11 years has been unpredictable and not comparable to the “average patient”. Had the Moffitt surgeon taken the time to thoroughly read the medical history I spent hours putting together, there would have been a more solid understanding of the kind of patient I am, right from the start. Instead, the surgeon tried to get me to fit, like a square peg in a round hole.

It’s not gonna happen.

by Robin

On Waiting…

If you spend any time reading breast cancer blogs, websites, and comments, you’ll run across the fact that none of us is comfortable waiting to hear the results of our tests. This comes up a lot because we have to wait a lot.

Let’s take my last week and a half or so:

1. I had an appointment with a breast cancer surgeon at Moffitt Cancer Center in Tampa, Florida. It was on a Friday and the surgeon told me I very likely have Inflammatory Breast Cancer, also known as “IBC” — a highly aggressive and deadly form of breast cancer with a five-year survival prognosis of between 25%-50%, and that’s with treatment. The “standard” treatment would be chemotherapy to reduce the size of the tumor, then a mastectomy, then removal of the lymph nodes under the arm next to the affected breast, then more chemotherapy, then radiation. So if you’re me, you find yourself thinking “why bother with treatment if my time is short and I want to live as normally, and as free of pain as I can, for as long as I can?”

2. I had to wait through the weekend and then through the first two days of the following week until Wednesday, when I was scheduled for an MRI, a mammogram, and an ultrasound. I’ll skip over the two hours I spent waiting for the ultrasound with no explanation about why I was waiting, but note the length of time here: five days before any testing began. That’s five days to wonder how sick I’d get and for how long. Would I die before the end of the year, or sometime during the next? How long does a woman who refuses treatment for IBC have to live? What options are there for pain management? Are there alternative treatments that work? How would my loved ones (especially my husband and son) feel about it? Should I tell anyone, or would that forever change my relationship with them? I know we each change when we learn someone is terminally ill — it’s probably impossible to ignore that elephant in the room. What could I do to make it easier on my friends and family? Is this really happening to me? Until this five days of time, I thought I knew what it meant to be alone. It’s much more intense and all-encompassing than I’d known. It’s the kind of thing you can’t change by talking to others or trying to distract yourself. Your focus becomes identified with what you’re going through: you and death have come close enough to hug one another.

3. The MRI, mammogram and ultrasound were done on Wednesday, at the end of which I learned I might not have Inflammatory Breast Cancer: more on that in a bit). Then I had to wait until Friday before I returned to the hospital for bone density and CT scans, which (natch) took all day. Lots of waiting between injections of dyes, for scanners to be free, until the next appointment time, and so on. It doesn’t matter that you have three hours to wait while in a town you’re not familiar with and you’ve got to have something healthy to eat for breakfast. (If you’re at Moffitt you’re in a part of town where you’ll find a Denny’s and a Perkins. Good luck with the healthy eating thing.)

In brief, from my first meeting with the breast cancer surgeon, it took a week to get five tests done which, in an Emergency Room environment, could have taken a day and, let me be honest, when I heard I probably have IBC, it was an emergency.

It’s now the weekend after the bone and CT scans, and I’m waiting for the results. If I don’t have Inflammatory Breast Cancer, what do I have? The MRI shows a sac full of fluid that looks like a large raindrop. I’ve studied cancer enough to know that a cancerous growth doesn’t have the smooth outline of a raindrop: a cancerous growth is has jagged edges. That’s probably why the radiologist told me he couldn’t rule it out as IBC, but he doesn’t think that’s what it is.

If what I have is another cancer, has it metastasized? Great question! Unfortunately, I’ll need to wait until next Tuesday to find out. That’s when I’m scheduled to see the surgeon who will, no doubt, have a plan for what to do about the sac of fluid. Will it be drained, as the surgeon’s nurse suggested? If so, when? Will there be a biopsy? If so, when? If it’s an infection, will I be put on antibiotics and if so, when? And why let me go so long without them?

I’d heard Moffitt is a great facility. Well, we haven’t had the greatest start. The staff might be wonderful and highly skilled, but as a patient, I’m becoming impatient.

For now, my only bit of advice — should you find yourself in this unwelcoming part of life — is this: you can kill some (not all) “waiting time” by going into denial, which is what I’ve been doing ever since I learned I quite possibly don’t have IBC. Mike’s my partner in escape. We’ve found ways to distract ourselves and I’ve lightened up on the healthy eating plan for now. Sometimes pizza (with wine) is the exact right thing.