Outside the Stats

I recently attended a breast cancer conference, intended mostly for medical professionals, but patients and caregivers were welcome too. Many aspects of this event warrant posts, but I’m going to start with an issue covered at the conference that is out of my area of experience. I know it is covered by many bloggers who are far more knowledgeable than I, having actual real life experience in the matter, whereas I am writing about something I did not do. I hope everyone understands that I am empathizing here, and hope no one thinks I do not have the right to discuss this topic.

I am talking here about women who choose to have a preventative bilateral mastectomy, for whatever reason—but especially for those who do it when statistics indicate the same cancer is unlikely to return.

At this conference I listened to an oncologist argue passionately against the increase in unnecessary mastectomies. She repeated evidence I’m familiar with, stats I’m not going to put here because I am sure readers know them; that bilateral mastectomies performed on women with no gene mutations, just a single, simple tumor in one breast, do not increase survivability rates. I could totally agree with this doctor. If you’ve read my About page and other posts you know that I opted for lumpectomy without reconstruction (pictures on the page called Fables of the Reconstruction). I did not get this so-called unnecessary surgery—I cannot handle anesthesia and avoid surgery as much as possible. Mastectomy in place of radiation was not presented as an option for me (I read other bloggers who went with bilateral mastectomy to avoid radiation), so my thought process was: get the least amount of cutting possible.

Surgical-Scalpel-Blade_93051-360x480

But where this doctor—and other doctors, and number crunchers—screw up is in the apparent failure to understand the reason women ignore this information: not fear of death, but fear of cancer, and fear of being the exception to the stats. Because even though I chose not to have “unnecessary surgery”, I understand all too well that it may seem not so unnecessary.

In the Q&A session the doctor was asked how she could or would convince a woman determined to have the mastectomy or a bilateral mastectomy when a lumpectomy would do. She stuttered a bit, and returned to the importance of having a deep, long conversation with the patient about treatment plans. I try not to judge this doctor; she is dedicated to making it clear that women no longer have to get the severe mastectomies that were once the norm. Surgery, technology—it all gets better all the time, so yes, treatment can make it possible that most of the breast is conserved, and it makes it less likely that the same cancer will return in the other breast.

That’s great, stats are great. But let’s think about to whom we are speaking. Most women think cancer could never happen to them (not the small percent of BRCA mutations positives, obviously). So when it does, how can they ever be convinced that it won’t happen again? Was the patient:

  • Diagnosed under the age 40—she’s outside the stats
  • Diagnosed with triple negative, or maybe just HER2+ (as in NOT EP+, the most common breast cancer)—she’s outside the stats
  • Fit/healthy/vegan/non-drinking/non-smoking—she’s the kind of person who has decreased the risk of getting breast cancer, according to nearly every piece of advice out there, and contrary to the OVERLY studied and reported stats, she got cancer anyway
  • A mother, who gave birth before age 30 (or whatever the magic age is for decreasing cancer risk)—she’s not in that group of women who delayed childbirth, another apparent cause of cancer, and she got cancer anyway
  • Diagnosed after getting a false negative mammogram—she’s heeded the advertisements that say early detection via mammogram is the best defense currently in use, and later, when the lump started to become more apparent that other tests were warranted, she got a rude awakening that the mammogram did not detect her cancer after all, in fact her detection is now late, not early—she’s outside the stats

So please don’t use stats showing the low likelihood of recurrence, or the low likelihood of dying from said recurrence, as an argument against mastectomy…on someone who fell outside the stats. Because a woman might be thinking, “yeah, so what, I’ll be in that low percentage that just gets the same cancer in the other breast.”

Even though I went the recommended way…this makes sense to me.

I know doctors have much on their plates and sometimes cannot think outside of the box. When my treatment was complete, my oncologist wanted to put me on the standard mammogram-every-six-months plan. When I asked to alternate with MRIs he started in with the stats, the standard care plans, blah blah blah, until I had to remind him that hey—mammograms are nice if they work. My first one ever did not. Why on earth should I trust them ever again? So, no thanks, I do not want to follow the recommendations or plans that these hallowed stats would indicate are best for the average breast cancer patient. Are any of us really average anyway?

Am I encouraging women to consider preventative bilateral mastectomies? NO. Am I suggesting women ignore the stats totally? NO. Do I think women should opt for the least invasive surgery possible? Absolutely. Do I support women who get this so-called unnecessary surgery? Unequivocally.

All I am asking for here is a little more consideration, and I’m suggesting there may be more to the picture than fear of death, fear of cancer. Yes, it seems some medical professionals and number crunchers are starting to get it…hey they aren’t just afraid of dying, but of getting cancer again, because hey, having cancer really sucks. Falling outside of stats is one of the many things that suck. It just seems with all the new pieces I am seeing in the news—about genetics being able to predict an individualized response to treatment, to maybe in the future develop treatments specifically for an individual—that recognition that not all cancers are alike, that many women are INDIVIDUALS who fell outside of the stats, should be more obvious.

Is this what women who opt for preventative (unnecessary in some minds, not mine) mastectomy think? If so, what kind of conversation needs to happen to alleviate the fears, to convince us all that we won’t fall into that freak percent of women who fall outside the stats….AGAIN?

I’m asking these questions—I do NOT know the answers and hope maybe people will talk about it. I’d like to be convinced myself…because right now I’m not. Help me believe. Help us believe.

P. S. I would also like to remind the doctors and number crunchers that while surviving cancer is great, certainly a worthy goal (yes, I am being snippy and sarcastic), not getting cancer is good too. Some articles I read only address the likelihood of survivability in the conversation about unnecessary mastectomies, all I can say is this: yes surviving a recurrence is great, but not getting a recurrence at all is better. Please keep that mind.

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Author: Cancer Curmudgeon

Oct 2010 diagnosed with Stage 3, HER2+ Breast Cancer. Completed treatment Jan 2012. Waaaaaay over pink. Applying punk rock sensibility to how I do cancer.

15 thoughts on “Outside the Stats”

  1. This is a conversation I have not yet had with my doctors, but I have with my husband. I am 53 and was a year postmenopausal. I had a single mastectomy and am having chemo AND I have to have radiation as well. Mine was stage 3, Grade 3, triple negative.
    I elected not to have an immediate implant. To me they look awful, it would never match my other boob so I’d probably need surgery in that. And I feel that my body doesn’t deal well with things that are not of itself. Bloody hell, it doesn’t deal well with things that ARE, apparently!!
    Now the radiologist tells me that radiation to chest wall and axilla would probably make implant difficult, and my best bet would be autologous reconstruction (ie with my own tissue). That is likely a ten hour surgery with between 6-10 weeks off work, and another large scar on my tummy, so not to be taken lightly! I’d probably still need surgery on the other breast to match!
    So my alternative would be to do nothing and try to get on with a prosthesis, but again, good luck matching my other boob! It’s going to be heavy, need special bras, and do they make them droopy??
    OR I could have the second mastectomy. Then I could choose to go flat-chested or with manageable prostheses, plus I would hopefully reduce my chances of having to go through this again with a new primary.
    Like you mention, I feel so far I am one of those unlucky women in the small percentage with the unexpected results! I have continually surprised my doctors so far …. and not in a “good” way!!! 😉

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    1. Yes, all that you’ve said here, is why I wrote this piece, even though it is outside of my area of knowledge. As annoyed as I got when a friend suggested (at the start of my cancer diagnosis) to just “cut ’em both off”, there is a part of me thinking it is the easiest way, in the end. An anecdote I did not include in this piece, but was a big inspiration, is my stupid story of dropping my phone in the toilet the same afternoon as my laptop melted down. I thought then, “what are the odds?” Well, yes that kind of thing is unlikely, but it happens, and why was I even surprised, look at how my cancer story defied the odds. (The whole electronics drama is in posts in early March). In retrospect, why am I even surprised at anything at all anymore? I told a friend recently I don’t believe in aliens, but if they do exist, they’d land in MY yard of course…because you know…what are the odds? Ha ha.
      In regards to how you feel about implants looking awful, I agree. I have told most of my thoughts and actions regarding NON-reconstruction in posts called Former Grunge Girl…Part x. If you find the most recent one it links to the previous parts. I’m almost finished, just waiting for the tattoo to heal so I can post a good pic with the final part of the story.

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    2. Hey, me too. Triple Negative, stage 3, grade 3. Nice to meet you Morwenna.

      My decision was to amputate both without regret, and then blog about the joys of breastlessness.
      I had to insist on the second when the surgeon told me she doesn’t remove healthy tissue. Except, it wasn’t healthy. It was lurking on my chest, waiting. Is my choice right for everyone? Of course not. I love the non-judgment in Curmudgeon’s post. Here’s my take on prosthetics and my indifference to what others think of my tight t-shirt over my flat chest. Great post CC.
      Deborah

      http://conflictcompetence.wordpress.com/2012/11/03/embracing-breastlessness/

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      1. Thanks! Interesting your surgeon was reluctant; I assume such refusals are based on risk of complications in the removal of the non-cancerous breast? There was a post on Huffington Post by a doctor who actually wrote in support or understanding of this increase in unnecessary surgery. He did not like the increase, but understood it. It appeared a few months ago and I have been unable to re-locate it; he seemed to be the only doctor who “got it”. Wish I could find it–it could be helpful to see a doctor’s opposite take on this issue.

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      2. Hi to you Deborah!

        I just had a brief look at some of your blogging pages ….. Staggered to find that we have the same surgeon in Calgary!
        Well I’m due to see her again in June, but first I will get a prosthesis and see how that goes ….. Hmmm ….. Food for thought!

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      3. What a coincidence. Jeannie is a wonderful surgeon and terrific human being. Everyone in the health system worked hard to save me. I’m grateful and feel blessed.

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  2. It’s a complicated issue. I don’t have the answers either. Are there too many mastectomies being done? Probably. But I am certainly not going to judge anyone. These decisions are not made lightly. Women need to get all the facts presented to them, as well as the risks and then make decisions that are right for them. Thanks for the interesting post.

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    1. Thanks for your response. I just thought maybe others have had similar thoughts, or maybe other reasons that are not being discussed by the doctors and number crunchers. Now is the time to bring those reasons up, because the patients and their reasons need to be heard just as much as the professionals writing the articles.

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    1. Yes, and the choice–and the factors that go into that choice–are not as simple as presented, currently in the many articles I’ve seen on this topic. The comments sections prove there is more going on that lead women to make these choices, and it would be great if they were listened to…perhaps a journalist should write an article about what the women are saying, instead of one quoting professionals who are wondering what is going on.

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  3. dear cc,

    number crunchers make me very, very nervous. the proliferation of statistics associated with number crunchers and high numbers of media articles hyping about the increasing number of mastectomies makes me even more nervous – and just plain pissed off. breast cancer is a random act of destruction, it does not respond to logic, nor to stats. and the chance of recurrence is just as random. until it is proven that there is treatment that is a clear path to a cure, it’s every cancer patient’s right to choose whatever means they feel is necessary to try to beat the odds. i worry about the effects of an oncologist arguing passionately against so-called unnecessary mastectomies, i worry about the fall-out of such impassioned positions – faulty thinking on the part of physicians who might feel pressured to advise patients against having mastectomies, and the inevitable judgement levied on men and women who stand firm in their decisions to do so, to say nothing of some big insurance honcho who decides it would be a good idea to have a new set of “guidelines” that could exclude cases that don’t fall within the “stats”.

    thanks for caring enough about this issue, cc, to open a dialogue about it. it’s okay that we don’t have all the first hand experience for every scenario dealing with treatment – i’ve never had a mastectomy, either. but what you set out to do – to empathize, ask relevant questions, and help focus on both the truths as well as the unknowns is very helpful. listening to BC patients and their stories will always bring much more enlightenment than those damn number crunchers ever will.

    love, XOXO,

    karen, TC

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    1. Stats can be used to argue almost any side of one issue! I too am trying to understand what might be a motivation for a doctor to advise against excessive treatment; it seems they’d WANT more surgery to happen, to keep “business” up. Not sure what I think of this yet.
      All I know is this: PEOPLE make us the stats; and it is no fun being in the small end of stats–that exception to the rule–that person about whom a doctor says “well, yes that CAN happen, but usually won’t”. Sure,a larger number of women make up the stats of those who get just a lumpectomy and do not get cancer again–but someone (PEOPLE) makes up the stats of those who do get the same cancer again, and I know I do NOT want to be in that small percentage, can’t imagine anyone would want that.

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  4. Wonderful post.. articulated some thoughts swirling through the void between my ears lately..

    I’m new to dealing with pre-cancer.. after a month living with the ‘pre’ missing.. mine’s not breast cancer.. but just the word cancer I’ve only recently realized the power of.. cancer, even with the ‘pre’ has been drowning out my own common sense..
    and worse I was forgetting my own mantra.. ‘doctors are practitioners NOT gods’..

    The only thing I can say with certainty right now is.. I Thank God every day for having discovered ALL of you sharing your personal experiences and lessons learned..
    Mahalo Nui Loa.. Thank You SO Very Much!

    Ano’ai kou alahele.. May your way be blessed

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