So Cancerland, Town of Breast, is experiencing another sort-of controversy in the form of the announcement that all women can (should?) have BRCA testing, regardless of family history. This all because of the discovery that there are indeed women who have the mutation even with no family history of cancer, which is a bummer. Opinions are running around the internet. Mine is: So what? This news is just not good enough for me to get excited.
When I first started blogging, I wrote some wildly unpopular opinions about my disenchantment with BRCA testing. My strong family history moved me to get the test, back in the days when only Myriad conducted it, and I was negative. At the time I was relieved and used the results as a tipping point in my decision to go with a lumpectomy rather than a prophylactic double mastectomy. Much later I learned that BRCA is only present in a small percentage of breast cancer cases, and that my own chance of having the mutation was only slightly higher than average. Then by participating in a study, I learned the way my results were presented—a simple “you’re negative for both mutations”—probably was not all that accurate, there were other things I could’ve been tested for (had been tested for but no one went over it with me?) that would give me info. I’ve chosen to not dig deep into that, because, it makes no difference now. I’m not going to go back and have more surgery. Can’t afford it for one, and, well, me and surgery don’t get along—it makes me puke, literally, too much.
So as I stand here on the other side of the horrible whirlwind of treatment and all those terrible decisions, I’m left, as I said, disenchanted and unimpressed. Because at the end of the day, I still had cancer and getting tested could not alter that fact. It might come back, and this test cannot alter that either.
Sometimes it seems to me that the discussions and announcements about tests for likelihoods, screening tools (mammography debate), and the “weak” preventative measures (women with no mutation-inspired “high risk” getting double mastectomies for an early stage breast cancer, and it makes no difference in likelihood of survival), are like that joke about looking for your car keys under the streetlight. You did not lose your keys there, but the lighting is better than the dark area in which the keys DID get lost. The big news in Cancerland always seems to revolve around how to better find cancer faster and earlier, and how to figure out who is most likely to eventually get it. But there seems to never be any “big” announcements about how to prevent it from happening in the first place, keep cancer from coming back, or how to better improve the survival once it does happen, especially for those whose cancer has metastasized.
Oh sure, there is a prevention offered to those who do have the mutation—one portion of the poison, slash, and burn treatment—the slash portion (and I think some poison is offered too, I wouldn’t know, I’m negative). Yes, only putting up with one portion, the slashing, is far better than putting up with all three, certainly a bit less dangerous and difficult on the body. But, I still feel it isn’t good enough. Sorry, that is just the way I feel. I don’t think it is crazy to want a waaaay better option to prevent cancer than the current option, if one is so (un)lucky to know that cancer is a damn near certainty due to a mutation. All this info we can know about ourselves and the option is still shit.
I don’t mean to belittle or blow off the years of hard work many folks put into testing, studying, and drawing conclusions about women and breast cancer. They are trying make a difference, trying to make a dent in the so-called battle against cancer. And I don’t mean to belittle those folks who embrace these announcements, who are encouraged with what truly is an incredible piece of the puzzle. Perhaps I am being selfish or self-centered, as I am only looking at these 2014 announcements through the lens of my own experience—but, well, that is all I got: my own point of view.
The Risky Body wrote about this BRCA announcement a few days ago and made a comment that pierced me. She suggested maybe those of us NOT BRCA positive have resentment because those who do have this mutation have info that can be viewed as an advantage. I admit, I do have this resentment. I was angry during that whole Jolie kerfuffle. All those media types praising her for being brave and proactive pissed me off. When my aunt was diagnosed at the relatively young age of 50 (isn’t the average age for female breast cancer patients 61 or 62? Did I read that somewhere?), I was all “proactive” and got a mammogram that told me I had no evidence of cancer. Five weeks later, I find out I have a big ol’ 5 x 6.6 cm tumor. I did the BRCA testing, thinking surely, with an aunt, a grandmother, and a grandmother’s sister all having had breast cancer, surely, I’d be positive and could be proactive. Again, nothing. As I reflect back today my breast cancer seems both random and inevitable. And I feel I was powerless to stop it, and am still powerless in the face of a potential return. The more I scramble to “do something”, the less I seem able to do.
If this post sounds bitter, it is. This is why I have not been posting much this summer. Writing is not the refuge it once was, bitterness just pours out of my fingers when I sit down to my keyboard. So I’ve chosen to not be bitter, and have been having fun this summer instead. I indulged myself by working hard, bingeing on old TV shows with a friend (catching up with the rest of the human race in understanding why “Breaking Bad” is the best show ever), (re)reading a trilogy now that the final book came out. I’ll probably go back to that for a bit, but yes, I do have other Curmudgeonly posts in the works. I’ve sat on them, for fear of just being too, well, bitter-sounding.
But I just had to chime in on this topic. Some would say I should’ve sat on this post too. But, one thing blogging has taught me is that there are likely a few women out there whose situation (BRCA status, mammography failure, etc.) is similar to mine. And maybe a few of those feel the same as I do about all this mess. Our similar feelings won’t change anything but at least we are not alone.
So I, or maybe we, will sit here and wait. I’m tired of hearing about how more mammograms and more aggressive surgery do not help one bit. I’m tired of hearing about new or more tests which will tell anyone bad news (you, Jane Q. Potential Cancer Patient will surely get cancer). I’m sick of these announcements being presented as “good” news. I want to hear someone tell me they can lessen my chance cancer will come a “get me” again. I want to hear that no other woman will go through what I did, age 38, scared out of my mind and utterly bewildered I got breast cancer younger than anyone else in my family. In spite of all the awareness and knowledge, I knew nothing, and still know so little and still feel powerless.