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.

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?

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.