Institutional Knowledge

I’ve been trying to put my finger on the word or phrase to describe the accumulation of common, shared knowledge that comes to a cancer patient participating in one or more social media platforms. I hesitate to use “institutional” when it comes to breast cancer, because it implies the normalcy, the rite-of-passage vibe that surrounds breast cancer, and I hate that—I do not want breast cancer to be thought of as “normal”, as just another step in a woman’s life. It should not be a step for anyone. But institutional knowledge seems the best fit.

Continue reading “Institutional Knowledge”

If You Don’t Approve of Preventative Mastectomy Don’t Get One

When I recently came across yet another criticism of “unnecessary preventative mastectomy” I reacted angrily. It was on HuffPo, and the article wasn’t even about the preventative mastectomy or the decision to get one so much as the author describing her husband’s reaction, but of course a commenter started in about “unnecessary mastectomy”, thinking all these BRCA folks with their 90% chance of getting cancer just need a little vitamin D. Puhleeze, so tired of this nonsense—does it not occur to anyone that maybe the author did research, already knows and considered whatever tiny-ass piece of advice someone clearly without experience and knowledge—like that particular commenter—could offer? OK, tiny subsidiary rant over.

I am so tired of people judging others’ medical choices. If you don’t like preventative mastectomy, don’t get one. No one, not even other breast cancer patients, let alone anyone else, has any idea of the millions of little details of another’s situation, medical and otherwise, and therefore are never in a position to criticize the choices of others.

But then I think: by sharing her decision (this blogger had previously written about why she’d had the procedure) and writing about it—and by extension, when any of us who put our stories on the internet—are we inviting this judgment? I’m not suggesting anyone stop sharing, not by a long shot. While I’d like to shout at folks like the commenter, “how are any of our choices impacting you—it’s none of your business,” did we make it public business, by, ya know, sharing our business? She put her story out there and she should not expect only bravos and applause, nor should I, nor should anyone. People judge each other all the time, but do we have a reasonable expectation to have them shut their mouths, not share those judgments, when we publicize our choices?

I’m actually not asking a rhetorical question here.

As I consider this most recent fuss that has come into my line of vision, I revisit what makes me write my story and show my pictures. I put my story and my pic here and the complimentary comments are great—I do feel good when I get that support. And it hurt to be told one time in comments on HuffPo that ugly pictures of breast surgery scars should not be posted on the internet (this was during the Facebook kerfuffle).

I certainly am not providing advice about medical choices by sharing my information (see my About page), nor do I assume anyone else’s information or choices will work for me. The more I haunt the internet, the more I think every single case of breast cancer is totally unlike the next. But I like hearing about other options, about other experiences, and other opinions—it helps me think and process my own experience, my questions. For example, I know most breast cancer patients choose reconstruction.  In fact, I’m starting to feel like a freak more and more for just going with a lumpectomy. It seems everyone I read on the blogs had at least a mastectomy, usually double. I wanted to show–hey there are other options and that’s ok—we all don’t have to do the same. So I present my choice, how I got there and what happened with it, as just another experience or example, and maybe someone can benefit from knowing about it.

If I inspire, great, if not, great. I’m sure the folks who complained to Facebook about the SCAR project would just accuse me and my posting of my nippleless breast of being some attention seeking exhibitionist. If people think that, I cannot help it. All I know is, it took a long time for me to find images that matched what happened to me (as I’ve mentioned a few times on my blog, I was clumsy at searching cancer issues on the web for a long while). So the more photos of breast surgery examples there are out there for people to find, and if they can help someone else who is just now going through it, then good. I remember how alone I felt, and I remember the relief I got from seeing images similar to mine, when I finally found them. That is why I do it, it is that simple.

I think back to the woman mentioned above who criticized the influx of breast surgery scar photos on the internet, and her comment to me in which she claimed that if she ever got breast cancer she would deal with it with a positive attitude and not post her pictures on the internet. Funny, I once thought I’d never post pictures of myself either. It is impossible to know what you will do in any situation until you are absolutely faced with it. The blogger inspiring this post was indeed BRCA positive. I got the test planning that if it was positive—not realizing how unlikely that would be—I would just get a double mastectomy and be done with it. It wasn’t, obviously, but even now, I don’t know for certain that if I’d gotten a positive result I would’ve gone through with it. I cannot possibly know that unless it actually happened that way. I literally do not know what I would do in any other situation other than the ones I actually faced. If I cannot even know what I’d do with one little situational change—how can anyone have the temerity to call it an unnecessary mastectomy if they’ve never even been close to such a choice? And even if they were close enough—then they should know how awful the choice is, and why not judging others’ decisions is so important.

Ultimately I think it does not matter if the HuffPo blogger, or me, or anyone, posts our story for anyone to read. If I’d just kept the info quiet, restricted to a few IRL people, I would expect none of those people to tell me if they thought I was right or wrong in my choice—I may have shared my business but it’s still not their call. What does it matter if 15 people, or 1500, or a million people know what I did, no one has the right to question my judgment on medical decisions that impact me alone.

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.