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.