Another Unfortunate Repeat

It’s not that I don’t want to write new stuff, it’s that the same old issues keep rearing their ugly heads and my mind remains unchanged since I originally posted. I wish I could be convinced otherwise on nearly everything I write about here, but that almost never happens.

What is getting my goat, and many others’ I suspect is the DCIS mess and the even more recent mess about unnecessary mastectomy. The DCIS is annoying because of the rush to reclassify without having a concrete way to figure out if it will become cancer. But what really makes me nuts is that I learned of the JAMA thing via a NYT Wellblog piece and that little factoid was not listed until the 13th friggin’ paragraph. You know, where the average reader will miss it.

Sure maybe most women with DCIS will be OK, and maybe most women don’t need mastectomy. But some might. Once you’ve been outside the stats, it is really hard to trust even the most hallowed medical opinions. This trust for me has been recently re-shattered, and I may write about it in the future, it is tough for me emotionally right now. Until then, re-read this. 

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.

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.

4 thoughts on “Another Unfortunate Repeat”

  1. They also fail to take in to account a patient’s PERSONAL STATS. In my family, there is a 100% chance that the original cancer will come back in the other breast AND a 100% chance that the cancer will eventually result in death. That’s 100%. In other words – none escape it in my family.

    I kinda feel they must take this in to account in my case.

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  2. Like you I fell outside the stats. False negative mammogram, HER2+ (hormone negative), had my son when I was 23, breast-fed him for 18 months, ate a healthy balanced diet, walked at least 40 minutes per day plus other exercise, non-smoker. But there are other stats – like being over average height, having a high birth-weight baby, having all other women in the family develop bc before menopause even though there’s no sign of BRCA mutation in my DNA. It seems there’s only one thing science can tell us about DCIS at the moment and that’s that it doesn’t know whose DCIS will become invasive. Science can tell us an awful lot about invasive cancer though and I for one wish I’d been diagnosed at DCIS stage, before I needed some pretty tough chemo and further herceptin treatment which will probably leave me with life-long side effects.

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  3. I’ve come across the above average height as risk factor tidbit a few times lately…but no one mentioned it to me. At 5’9″ maybe I’m not above average (never looked it up), although I do tower over all my friends!
    After posting this I finally caught up on a podcast in which a doctor pointed out that sure, few with DCIS may develop cancer but it matters a great deal to those who do. I was like, thank goodness, finally someone gets it.
    I know you had a particularly difficult time with Herceptin, so yes I hear you on wishing DCIS had been caught and dealt with.

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