The Numbers Game

Against All Odds

I am not my breasts. And they are not me. They have only ever occupied a rather modest amount of my body, and I have never identified myself by their presence or absence. I am also not merely a collection of differentiated cells or a repository of biochemicals. Nor am I a recurrence risk or a survival statistic. I am not a number. Indeed, I like to think I am more than the sum of my parts. Yet, an entire segment of medicine has, for the past eighteen months or so, tried to fit me into slots defined by cells, body parts, substances and percentages.

When I was taking prerequisite courses for graduate school, there were two classes that forever changed the way I look at the world. The first was organic chemistry, and, yes, I am one of those unspeakable nerds who liked organic chem. You had to be there, though. The lecturing professor was married to a buddy of mine and was an incredibly nice guy. And the lab professor could easily be persuaded to wax rhapsodic about the really fun kinds of organic chem, like cooking, candy making and bread baking. Once I had organic chem under my belt, believe me, I never read a cookbook or a product label the same way again.

The other class was statistics, in its way even more perspective-altering than organic chemistry. The professor was one of the statisticians for the Framingham Heart Study, one of the largest and most significant longitudinal health research studies ever conducted. Launched in 1948, data are still being mined and interpreted to this day. My stats professor spoke English with an accent which lent a certain charm to the arcane vernacular of her subject. And despite that arcana, she was a bright and approachable woman who enjoyed talking about the “dark side” of statistical analysis. When I had to conduct my own research in grad school, her teaching served me well, and I learned even more about the vicissitudes of research data, which, with the right equation, can be manipulated and skewed and presented in a variety of ways, thus communicating sometimes contradictory and frequently inaccurate conclusions. Since then, I almost never take research findings at face value. A little research into the research often yields something entirely different than news headlines would indicate. But there’s nothing like sheer terror to overwhelm one’s natural skepticism. And there’s nothing like a diagnosis of cancer to suffuse your existence with sheer terror.

Just Call Me ‘Nell’

The first time I met with a radiation oncologist was a few weeks after breast surgery. He was the head of his department at a large teaching hospital, so he gave his resident the task of interviewing me and presenting my data. These were data gleaned from my post-surgery pathology report, which were then evidently churned through some formulaic machinations that ultimately spit out my prognosis and recurrence risk. The resident was a sincere, credible young man of around thirty. He was friendly and had a comforting manner about him. I was still walking around with a small ice pack stuffed in my sports bra to ease the pain and swelling of surgery, so I was susceptible to being comforted. I also still believed in oncologists then. The most inspiring lecturer I’d had in grad school was an oncologist, whose compassionate candor prompted me to regard oncology as a noble specialty, full of practitioners who would always have my best interests at heart. So silly of me. What was I thinking?

When the resident began to recommend I follow surgery with radiation, I did not dredge up my usual skepticism. I did not think, well, of course he’s recommending radiation — he’s looking for customers. As he explained my risk of recurrence, I did not challenge his assumptions. I did not ask why he claimed I’d be half as likely to have a recurrence with radiation than without. I did not insist on seeing the actual statistics he was citing or the studies that produced them. I did none of those things, because I was still getting over the shock of having just sacrificed half a boob to the scalpel, when I was told I was only donating a ‘lump.’ And his opening assertion took my breath away, which was that if I didn’t do anything else, I had a one in three chance of having the damn disease come back.

Now that I’m a jaded survivor, I’m convinced that many if not most oncologists get a kind of morbid satisfaction from frightening their patients with ominous percentages, then offering their treatment recommendations as if they’re galloping to the rescue on a white horse. But on the day I met the radiation oncologist, I was still in shock about having to meet one at all, and I didn’t know that the white horse might turn out to be a Trojan horse. I did manage to find out that there were more radiation protocols than the single option that he described to me. And I insisted, during my next visit, that I be evaluated for those other options, and was thus able to get the number of my treatments cut in half. But, I still went and let them fry me in the first place.

Something Wicked This Way Comes

It wasn’t until I was halfway through my tanning sessions that I stumbled upon the The Van Nuys Prognostic Index, an analytical tool used by pathologists and oncologists to calculate recurrence risk for patients with ductal carcinoma. If I’d found this at the beginning of the nightmare, I would have been better equipped to ask questions and gather information. The site upon which the VPNI is explained is written by Ervin B. Shaw, M.D., a gentleman and a scholar, as well as a pathologist who believes in informed consent as fervently as I do, and attempts on his site to demystify the assumptions behind the cancer treatment veil. The Elston modification of the Scarf-Bloom-Richardson system is the tool used to grade invasive ductal carcinoma, and staging is done using a tool formulated by the American Joint Commission on Cancer. Dr. Shaw, who deserves sainthood as far as I’m concerned, provides a concise, cogent summary of these and other tools of the trade on his page about Breast Diagnosis. You gotta love a guy who begins such a page with a properly validating paragraph about getting the awful news in the first place. He’s entitled it, “Shocking Stress,” and he immediately follows it with the empowering remark, “The safest course for a woman in avoiding death by breast cancer is to take charge of her life.” He then proceeds to help you do just that by providing The Knowledge. Right on, Dr. Shaw. You da bomb. You helped me figure out what the damn docs were talking about, and eventually, you helped me realize that, with genuine informed consent at the start, I could have avoided radiation altogether.

And then there’s chemo. I did manage to avoid the chemo discussion because I had no invasive cells or lymph node involvement. Chemotherapy is another whole witch’s brew — literally — with another whole set of assumptions and research data and side effects to consider. If this unsavory option comes up, not only does your tissue have to be analyzed, graded and staged, but pathologists will carefully look for a host of tumor markers beforehand. These are substances found in our body fluids which are considered at different points in the diagnosis and treatment process, to help medical oncologists determine whether or not to poison you and what kind of poison to do it with. Lovely. This link will provide a downloadable pamphlet about tumor markers for breast cancer. I would need an advanced degree in organic chemistry to discuss chemotherapy adequately, but here’s a hyperlinked PDF: Understanding Chemotherapy. At the bottom of this post is a PDF link for a downloadable breast cancer guide that does a fair job of outlining all the many-splendored delights of all forms of breast cancer treatment, including a comprehensive list of the various substances used in chemo. You know — eye of newt, horn of toad, that sort of thing. There’s even a theme song for the experience following this paragraph. Quite a catchy tune, really. Do click the play button and sing along, won’t you? I promise you’ll feel better.

The Hand You’re Dealt

After the docs finish subjecting you to the scorched-earth treatment, yet another discussion may take place about long-term, preventative hormone therapy. It would be far more accurate to dub it anti-hormone therapy. “Hormone” therapy is based on the fact that a lot of breast cancer tumors feed on estrogen. So, the theory goes, if you can limit their supply of estrogen, you can keep the little bastards from coming back or taking hold. Naturally, the next logical conclusion that any reasonable oncologist would leap to is that estrogen is BAD, BAD, BAD, and must be banished forever from your body!! Huh??? Does anyone besides me find this reasoning misogynistic? I mean, correct me if I’m wrong, but I thought the enemy was CANCER, not estrogen. I mean, hell-ooooh? Estrogen is actually kinda helpful, you know? Like, dudes, the human race kinda wouldn’t exist without it?

Contrary to popular belief, natural menopause doesn’t shut off all our estrogen forever. There’s a lot less of it floating around, but it’s not gone entirely. There’s still enough hanging about to help keep our bones from turning into dust, for instance, although they may get thinner. If they get too thin, you develop osteoporosis, which can be a crippling, debilitating, and, yes, even deadly disease. I happen to know that, because my mother died of complications related to osteoporosis. Her spine was so deformed by it, her heart, lungs and stomach couldn’t function properly anymore. It stands to reason, then, that if you take a drug that shuts off all the estrogen in your body, you might start losing bone mass and skin collagen and joint resiliency and protection against arterial plaque and, oh yeah — your sanity. And yet, the latest Koolaid in the breast cancer arsenal is a class of drugs called aromatase inhibitors, which do just that by blocking the body’s ability to manufacture estrogen. But the medical oncologists push AI’s like they were M & M’s. Personally, I think the dark chocolate M & M’s would be a lot more therapeutic.

I was post-menopausal and osteopenic by the time I was diagnosed with the Stalker, so aromatase inhibitors weren’t such a good idea for me. Instead, my medical oncologist recommended tamoxifen, which is a selective estrogen receptor modulator (SERM). SERM’s don’t turn off the estrogen faucet, but redirect the flow. Tamoxifen, in particular, would keep estrogen away from my ta-ta’s, while letting it float over to my osteopenic bones. Or so I was told. It would even help lower my cholesterol. And most importantly, it would cut my remaining 15% recurrence risk in half. The only problem was, I couldn’t take my usual anti-depressant with it, because the two substances didn’t play nicely together in the liver. There weren’t too many of them that did play nicely with tamoxifen, it seemed, and I was most definitely NOT going to continue this sleigh ride without one, so I was allowed to try Effexor. Thus armed, I started tamoxifen and Effexor a month after radiation.

Followers of this blog know what happened after that. Between the side effects of radiation, and the stress, and the surgery, and the new drugs, and the lack of useful follow-up help, and the cancer-related fatigue, and the decrease in concentration and memory, and the fact that I was led to believe I’d be all right to go back to work as soon as I did, and that I’d be right as rain in a few months, which I was not, 2009 unfolded as one long, drawn-out descent into side-effect hell. After months of this torture, one of the things I did was to revisit Dr. Shaw’s website and recalculate my own prognosis and recurrence risk from my post-surgery pathology report. I also took a long, hard look at the statistical numbers — all the numbers — upon which many underlying treatment assumptions are based, and I put them back into the context from whence they were plucked. And guess what? Even if I believed the studies and used their stats, hormone therapy wasn’t really buying me much. Tamoxifen was only reducing my so-called recurrence risk by 7.5%. Meanwhile, I felt like I’d aged about ten years in ten months. My skin and hair and eyes were as dry as the Sahara, my joints ached, my brain would run out of gas at extremely inconvenient times, and I absolutely hated Effexor, which gave me stomach-aches and head-aches and made me dizzy. Five years of this I was supposed to endure? For a crummy 7.5% decrease? I don’t think so. Besides which, the chances of my not having a recurrence were way in the double digits, and I was going to be getting mamm’d and squished and poked and checked quite diligently for the foreseeable future. Even if the Stalker returned, odds were we’d catch it early. So, after eleven months, I quit taking tamoxifen. And I felt better. And my med onc agreed with my rationale. So there.

Just today, a new research study came out that was, as usual, misrepresented by blaring, misleading headlines: SSRI’s and Tamoxifen Increase Mortality. Mind you, this was actually posted like that on the Facebook page of a well-known breast cancer information site. Well, you read that, and you think, okay, I can be not depressed and croak, or be totally bummed out and live longer. Great! Except that’s not the real story. The real story is actually good news, which is that the study looked at long-term use of a variety of anti-depressants taken with tamoxifen, and found that only one of them, Paxil, was actually associated with any adverse affect on the benefit of long-term tamoxifen use in reducing the risk of breast cancer recurrence. The other anti-depressants, that did not appear to cause any decreased benefit, included Zoloft, Prozac, Luvox, Celexa and Effexor. It may be discouraging to read in the study that “up to 25% of patients with breast cancer experience a depressive disorder,” but frankly, I think it’s quite appropriate to find having breast cancer depressing. In fact, I think 25% is a modest estimate. But the good news is that even if you are taking tamoxifen, which is probably making you feel more depressed, you can safely choose from a variety of drugs to help you feel less depressed. Or, you could just chuck hormone therapy altogether.

I must admit that what’s possibly more depressing than having breast cancer is the way the doctors frighten us with that nasty, blinkered, glass-half-empty attitude. What’s so great about maybe shaving 7.5% off my risk of having breast cancer again in the foggy future? Not worth destroying my quality of life in the present. I think it’s much healthier to focus on the 85% chance that I WON’T be dealing with a return of the miserable, stinking disease ever again.’s Guide to Breast Cancer
Breast Cancer Recurrence Risk Analysis

Please click on the post title or the comment link below to post a response.

This entry was written by Kathi, posted on Saturday, February 13, 2010 at 12:02 am, filed under Chemotherapy-IV & Oral, Diagnosis, Recurrence, Screening, Health & Healthcare, Nitty Gritty, Radiation, Research, Surgery & Reconstruction and tagged , , , , , , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

8 Responses to “The Numbers Game”

  1. Wow. Did I read that right? Did you say you really didn't need radiation? That maybe you could have avoided this year long ascent into hell? I am glad you have the brain power to dredge through all those studies. Stuff like that just has me drifting off into la la land.

  2. Yeah, Coco, there’s a Trackback thingy up above in the white box below the post. I’ll try to reformat it so it’s clearer. Love our tech-y tangents here…

  3. Wowowzers KAK!!! I LOVE your blog. You make it so easy for me to understand……..ya know….all the cancer junk…hormones, cells, percentages, and on and on.

    Sure wish I could have had you around when I was making some tough decisions.

    Seems like you’re doing really good KAK! I’m proud of you for taking control and taking your life BACK!!!

    Now…LOL…..tell me how to lose the 30 menopause/Arimidex pounds I plastered on this last year!!I think I’ll probably die of obesity before breast cancer………heha

    Love you KAK!

    Keep up the good writing!!

  4. I awarded you TWO blog awards – you have to come by to check them out. 🙂

  5. When I started reading your blog, I didn’t expect there to be many similarities to our experiences. Wrong! Obviously the culture of oncologists is pervasive.

    I was told I should get proton beam therapy on my prostate. Why? Because, after all the poking of my prostate in the preceding months, lo and behold, the doctor running the radiation therapy department detected a lump on my prostate! The only doctor to do so! And I had good insurance! Coincidence? I think not.

    I have often wondered how many stray protons settled in my body during these sessions, changing the DNA of random cells.

    I haven’t gotten to chemo. Yet. In a few years, when hormone suppression no longer works, I will get there. I asked how long that might be and was told 2-12 years. Such a nebulous future!

  6. […] The Numbers Game […]

Leave a Reply