- It’s taken me a long time (5 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. But there have been good changes too.
- One of the breast “cancers” I’ve had was DCIS (Ductal Carcinoma In Situ) in 2006 (right breast). It was triple positive (hormone receptive), following a triple negative in the left 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 triple negative in the left breast, it was agreed by all that removing the DCIS from my right breast made sense. 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) found another cancer along the scar line of the preceding surgery. She guessed it was the same cancer and I can’t argue about 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 Dr. Yang the benefit of the doubt, because she earned my respect and trust.
I first met Dr. Yang at the hospital nearest my home. But by this time, she’d moved to the Lahey Clinic in Peabody, MA, and was heavily booked. Still, she always took enough time to set me at ease. The day she suspected another cancer in the left breast she told me she’d like me to get an ultrasound biopsy before I left. I agreed. My dear husband, Mike, sat in the waiting room for about 3 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 she’d be working on 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 the tissue from my left breast without anything to numb my pain. In a knee-jerk reaction, I pulled away from her and cried out that the area wasn’t numb and the procedure hurt a LOT! She told me to lay still or the biopsy would be scheduled for another time because she had a busy schedule. (The Lahey Clinic in Peabody, MA is an hour commute each way, so delaying the biopsy would mean another half day dealing with this.) I gritted my teeth and tears ran down my cheeks, while she removed tissue from the breast. When she was done she quickly left the room, and 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.
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 4th surgery on my left breast, which was already considerably smaller than my right breast due to the prior surgeries. I asked if it was possible to adjust my breasts so they’d be about the same size. She said yes, adding that she knew a good Plastic Surgeon with an office down the hall from her department.
My husband and I met Dr. Wou, Plastic Surgeon, about 2 months later at the Lahey Clinic in Burlington, MA. 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, MA 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 and I said we 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 three Plastic Surgeons who report to me here 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 began to make sense. The reception desks which once had 4 or 5 staff gradually wore down to 1 or 2 staff — with long lines of patients waiting to check in. Unlike 20 years ago, when checking in was quick, 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, suppliers, vendors, online customer service … anyone using a computer to keep the records. (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 look at their calendars and schedule a date for surgery. The date was eventually set for July 26, 2017, over six months after the diagnosis and botched ultrasound procedure.
As with all prior surgeries, I had a pre-surgical appointment a week before surgery to provide current 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 this. 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 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 surgery twice; for an in-office sigmoidoscopy I was given insufficient anesthesia and was in pain while the doctor ignored my urging 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 this, I’ve concluded they don’t read my chart to see how I did 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 to go over my history 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. To me, 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 into pre-op. I wasn’t given pre-surgical “calming” medication because “we need you to be alert when the doctor sees 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 that’s when I lost it: morphine worsens pain for me, which was on the summary of my medical history and something I’d stressed with the anesthesiologist in Burlington. 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. No, he 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 vendor for IV painkillers. I was quite agitated when Dr. Yang happened to arrive and heard why I was upset. My husband was back from the 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 had disappeared while Dr. Yang, and then Dr. Wou, came to see me pre-surgery. I was in distress that my 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 came-to 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 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 had to have been too low for my body and thus didn’t do any good. Years later, on an unrelated issue, an anesthesiologist fully listened to my problem 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 any of it for 5 hours. You read that right: I was in post-op for 5 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 5 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, letting my husband and me know I’d be given a dose of oxycodone in another 4 hours to keep the pain at bay. And 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 began to shoot up. 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 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 the 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, 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 handed me prescriptions for Oxycontin and Oxycodone and told me to take them as needed. I got dressed as best I could, and Mike drove the hour it took to get 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 my Mike I thought 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, 80% 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 it was okay to send me home.
I had an appointment with Dr. Wou (the Plastic Surgeon) the next day. I told him about the E/R 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, and that 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).
Dr. Yang was very pleased with the outcome of the surgeries, and told me further follow-ups would be with Dr. Wou. And thus began a series of appointments with Dr. Wou 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 other doctors from around the area send 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/breast, and that the wounds would eventually heal.
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 my husband and I 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 husband I was done. I tossed off the Johnny, put my sweater back on, and asked my husband if he was ready to go. He said he was and we walked out of the office into the hallway where we saw Dr. Wou talking with two nurses. There was a chorus of “Oh no! Don’t leave!” To which I responded: “We’ve waited for 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 6 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 known 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, and 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 it was clear they weren’t working 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 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 one. I’ve stopped getting mammograms, I’ve stopped feeling for lumps, I’ve stopped wearing a bra, I’ve had to take a mild (non-opioid) painkiller for chronic pain across my chest because Dr. Wou’s surgery evidently pulled the cartilage 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. No one gets out alive. There’s only one person responsible for the quality of my life between now and “lift off”, so I’m focused on living as peacefully, lovingly, and happily as I can.
A Note To New Readers and/or those who are newly diagnosed:
Please remember I’m now 73 years old and have lived with breast cancer(s) since I was 50. It’s very possible I’ll live into my mid-’80s! So my situation 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. But most importantly, listen to your body while also learning all you can about your diagnosis so your “intellectual voice” and that “little voice in your head” 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.
- Younger patients have better outcomes with chemotherapy and radiation than older patients.
- 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”.
- 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 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 breast cancer on your chest wall.
- The medical system in the US has deteriorated to the point where patient comfort is not a high priority. You must have an advocate or advocate for yourself. This is easier when you’re listening 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.
- I wish you the courage to do what you feel is best, and to embrace whatever comes next.
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