Not Good Enough

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.

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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.

19 thoughts on “Not Good Enough”

  1. Count me as one of those totally agreeing with you. I have not had the genetic testing, though I am the ONLY person in my entire known family with a diagnosis of any kind. And I have zero plans to have it done. My blog on this will come out eventually….but like you, I sit on so many posts…for several reasons. But I am totally with you on this one.

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  2. I don’t see your post as bitter, but realistic. Yes, there’s always some “breakthrough” that’s nothing new or helpful. News “after the fact” only makes us wonder if we made the right choices for ourselves. Until we focus on finding the cause(s), there will be a continuing chain of these stories. Of the three sisters in my family, two of us (one of them me) have had breast cancer. After my diagnosis, the other sister took the genetic test and was negative. She later developed breast cancer. I haven’t had it because the genetic counselor seems to think there is little chance mine was genetically “inspired,” even in light of my sister’s situation. My cancer was hormone negative and occurred before menopause. My sister’s was hormone positive, occurred after menopause, and might be related to her taking HRT. The third sister, if you just look at the surface, should be scared out of her wits. But her risk is apparently no higher than average. And the genetic tests we have cover only a couple positive mutations out of who knows how many that might matter. This is why the media can’t get the story right. Too many factors, too much detail. And so the go for the headline stories like Jolie’s, which skews everybody’s understanding of things even more. The latest report out of JAMA shows that prophylactic double mastectomy is no better for survival rates than single lumpectomy, but also found that single mastectomy showed worse survival rates. At least that was the headline. The details of the study (which I have) show that the women having single mastectomy tended to be more African-American, Latino, and at a low socioeconomical status (including lack of private insurance), while the double mastectomy candidates were largely Caucasian, higher on the socioeconomic ladder, and had private insurance. So how useful are those results? They tell me more about the levels of care given based on insurance and access to health than they do about the effectiveness of breast cancer.

    Keep writing. The more of us there are to cut through all the crap information that’s out there, the great the chance of the important things getting said.

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    1. Ha ha, I see myself as realistic as well, but often am told I’m negative-oh well, whatever, nevermind (to quote the late great musician).
      Your story, or rather the story of your family, frustrates me because it is another example of how this thing called cancer, and how genetics, just all are still so mysterious!
      Yeah, cost and life situations are a bigger factor in cancer treatment choices than discussed I think. There are more factors at play than simple staging and whether the medical industry correctly informs a patient, and these things are not recognized in conversations, I think. Sigh, that is a topic for another post.
      And yes, I will try to keep writing, especially since you inspired another post topic! Will try to make time. Thanks for reading and commenting, as always. I am always grateful when folks read and comment.

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  3. Good to hear from you again. You always get my motor revved and my mind thinking. And, I like your poison-pen posts (where did that come from?) No, seriously, and I have told you this before, I LOVE your writing and your topics and viewpoints are always right on target and filled with passion!

    There is so much breast cancer in my family, both maternal side and paternal side but all of us women who had breast cancer (several died from it) were all negative with the BRCA. Beyond that, similarities vary. My breast cancer was estrogen positive, I never used the “pill”, it’s just genetics, I guess.

    My 2nd cousin who is much younger than me had her first bout with breast cancer 5-8 years ago and chose lumpectomy and radiation, maybe chemo too. Well, it came back and this time she decided to f~ck it and get the bilateral mastectomy. She regrets not having done that in the first place, but, there are no tests – yet – that can predict recurrence, so the best that women can do is take the advice of their doctor who is basically guessing.

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    1. Thanks Swoosieque, your support is always welcome.
      I have to grimace reading how you were estrogen positive and never took the pill-guess what? I took the pill for about 20 years straight, no break, and was estrogen negative. I guess there are tons of anecdotes like ours that defy what is supposedly “known”.
      Yeah, I’ve had so much anxiety lately, I have been having twinges of regret, thinking I should’ve just had the bilateral and been done with it Take away the dread of mammos each year.
      Good to hear from you!

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  4. dear CC,

    once again your astute and candid writing has brought much conversation to the table. the frustration, the lack of clarity in reporting in the media and continuous conflicting information, forces those dealing with breast cancer to feel heightened stress, doubts, and fear about choices made for treatment. it feels so exhausting and futile to try to figure out such a huge issue that often makes no sense. I agree with Julie – your views, thoughts, and feelings are realistic. but one who has gone through what you and so many others who are questioning the veracity of what was advised re: the BRCA issue have every right to feel bitter.

    keep writing, keep questioning, keep sharing. you are helping us all, and I hope that fact helps even a little bit towards feeling less powerless. you are a force of nature, and this post was POWERFUL!

    much love,

    Karen XOXO

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  5. Random and inevitable – yes, that’s how I felt when given my diagnosis too. My family history, like yours, screams “you’re gonna get cancer.” Sure enough that’s what happened. So I don’t buy the random bit and neither did my surgeon – she’s convinced its a mutation they have yet to identify. Then there’s the inevitably bit. The chances are if they’d given me a prophylactic mastectomy like I’d asked aged 30 I wouldn’t have inevitably developed one of the crappiest kinds of breast cancer. If I dwell on that thought I get angry, very angry, so these days I make sure I’m not fobbed of with “you might not follow in your relatives footsteps.” I already did and like you, I don’t ever want to do it again.

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  6. I am always touched and inspired by the honesty in which you speak! You have a right to you to post and share YOUR authentic feelings. No one has to like or agree. Yet you still have that right. I applaud you for standing up to what you know to be the truth. Far too many people hide for fear of saying something that might offend another. Your words are tasteful and truthful, that is all anyone should require from a writer.

    You speak as learned Professor or Expert in the this field and I for 1 look forward to reading your continued posts of your journey through this phase we call ‘a human experience’ here on planet/Mother Earth.

    Bless you in all ways. Sending you Love and Hugs today and every day.

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    1. Thanks Revsandy! You so often remind me that my focus must be to speak honestly, even if my “truth” is not in keeping with popular opinion. Hmm, you inspire me for another future post maybe.
      Hugs to you too! – CC

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  7. I chose not to get testing, even though I was diagnosed at a young age and some suggested I consider it. That was because I had no family history of breast or ovarian cancer and was not a member of a higher-risk population. I don’t think this group’s findings alone would have been enough to lead me to a different decision. More importantly, I share your frustration with the over emphasis on genetic testing right now. As you’ve said so well, the options for those who do have a mutation are still terrible right now, and none of this helps those who’ve had cancer and want to be/stay healthy.

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    1. You know, despite what this post indicates, I actually do want any and all info, so if I had to do it over, I’d likely get the test. I’m one of those over-cautious types that wants to know all possible facts, even if the data might not be all that helpful. But, I understand why people don’t want to get tested for likelihoods of developing disease–I’m not just talking about BRCA now, but other tests/diseases and the discussions I read about every so often. Folks figure the foreknowledge won’t help, so why bother? I get that, and that is kind of my feeling here regarding BRCA.
      I don’t mean to insult researchers who should feel proud of their achievements, but it gets so old, constantly having medical research presenting fancy cakes when I need basic bread to survive.

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  8. I’m not so sure tests and facts are always closely aligned concepts, CC; so I come out on this issue with a fat “maybe” to testing about likelihood. I got upscale diagnostics and that saved my life, and yet, I intuitively support the new recommendations to reduce testing. How’s that again? Well, it depends on where one draws the boundaries. Short term, if I hadn’t had the extra mammogram I’d be dead. Those boundaries are linear and close in time.

    But health is a time series and nonlinear. So, let’s expand the boundaries. My medical intervention started long ago with breast cysts that doctors poked, radiated, and needle biopsied.

    Had they not stuck needles multiple times into cystic breast tissue to ‘Test’ for likelihood of disease, would I have gone on to develop cancerous micro-calcifications at the same places in my breasts that they biopsied? That’s the nonlinear question without answer.

    Put my vote on ‘undecided’ please.

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    1. Yeah, I am a maybe much of the time too. When the mammo debate reared its head last spring, I wrote about how frustrated I was because mammos failed me, yet, the announcements from research that they are not all that useful and should be used less disturbed me. Then with this BRCA issue, part of me thinks as much testing on every single BC patient should be done, because data and knowledge are power. Yet, all that knowledge doesn’t provide better prevention (in my view). And yes, your story is kind of scary, because: what if tests to find cancer caused cancer?
      I know that there are no answers, and I try not to dwell on that, but sometimes I get too annoyed and…a post like this happens.
      Anyway, good to hear from you, thanks as always for reading and commenting, take care! CC

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