My best friend Katie and I play a mean game of “Would You Rather?” (To be honest it’s mostly Katie with her insane imagination but I am there and I play.) From the hard hitting: Would you rather marry a magician who was constantly doing tricks or marry a chronic nose-picker? To the deep life questions: Would you rather wake up one morning and not remember the last 24 hours at all or wake up and realize you just spent the last 24 hours naked? Like you lived your normal like but you were naked. This game has become a staple of our friendship and aides in our endless ability to entertain each other.
For the record, I would chose naked. I could not handle the not knowing. I need that control over my own life. Except for today. Today I would rather not know.
Would you rather take a genetic test to find out if you carry a gene mutation with an 85% chance of causing breast cancer OR, just, not?
We are pretty sure my father’s family is of Ashkenazi Jewish descent and we know his mother died of breast cancer at age 55. Which means nothing or it could mean nothing. It could mean that I am not one of the 1 in 40 Ashkenazi Jews that carry that BRCA mutation (as compared to 1 in 800 in the general population). It could mean because my paternal aunts and cousins are fine that we don’t carry it and my Bubby got sporadic breast cancer.
Sporadic breast cancer is a term I learned today from my packet entitled “Hereditary Breast and Ovarian Cancer Syndrome: A Patient’s Guide to risk assessment.” It is a terrifying packet handed to me by my OBGYN while I wasn’t wearing any pants. I add this because the indignity of being told you should probably get tested for a gene mutation that almost guarantees you cancer while half naked cannot be overlooked.
One of the most interesting things about this whole day was the assumption everyone I told had that I would be tested. There was no “Would you rather?”. Just a simple “You should do this.”. I’m not saying I don’t want to know, again, I chose naked but I almost wish it hadn’t been proposed because now it’s an entirely different game:
Would you rather be at risk for breast cancer your whole life or reduce that risk 90% by double mastectomy?
Would you rather have children or reduce your risk of ovarian cancer by 60% and take oral contraceptives for the rest of your life?
Would you rather get tested for a gene mutation or just be 28?
*this post reflects my day and the information given to me by my doctor in my packet. This is not medical advice or anything else. Please be kind in comments, it's been a day.
a brand new line. 
I, myself, would like to know, but I would REALLY like to know. That is, I’d like to know the chances of getting it if I have the gene. I’d like to know the chances of the test being wrong. All the details are important here.
In an only related note, I have read this anthology called “Machine of Death” and am now halfway through the sequel “This is How You Die.” They are collections of short stories based on the premise that there is a machine that takes a blood sample and spits out a word or short phrase about how you will die. It’s 100% accurate, but in the old genie trope way can be misleading (eg “Cancer” could mean you are going to be murdered by someone born between June 22 and July 22). Most of the stories, though, don’t revolve around the weird deaths, but what a culture might be like in which everyone knows how they will die. They’re very thought-provoking short stories and worth a read, I think.
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There is nothing I can say here that would be helpful. So, I’m simply reaching over and squeezing your hand and hoping that will suffice. *squeeze*
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Whichever you choose, I wish you all the best.
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Oh Anne – how difficult to make this choice when you are 28. I made that choice when I was 48, and it was horribly difficult, even being on the far side of child-bearing. I already had breast cancer, had already undergone both surgical and chemical treatment, but being of Ashkenazi descent, with 2 grandmothers who had the same disease, I had to consider whether there was more I could do to protect myself from further illness.
The truth was that I was completely willing to take ANY steps that might prevent more cancer – knowing that there is no guarantee. I don’t know that at 28 – a little distant in my rearview mirror – I would have felt the same way. What gave me the most pause at the time was my two female children – 15 and 17 at the time. I was not at all sure that I wanted to burden them [or myself] with foreknowledge of potential disease. But ultimately, I decided that I had a need to know – good or bad. This is not true of everyone – I have met many women who opted not to find out, with family histories much darker than mine.
The footnote to this overly long comment is that while I tested negative, my oncologist warned me that this test is only for one mutation that they know of (or knew of at the time), and that I need to live my life well, and now. I guess we all do.
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I heard a man say yesterday that we are the sum of the choices we make and the actions we take. If we let fear of the future (or anything else!) keep us from making decisions, we still get what we choose. My grandmother, both of her daughters, and two of her granddaughters (the granddaughters were both under 35) have had breast cancer. My dad, very concerned about the genetic link, had the test for the gene – he knew my sister and I were at serious risk. We wanted to know, so that we could make an informed decision. He does not have the gene, but we still have that sporadic risk. My heart is with you in your choice. Whatever you choose, it will be the right choice for you. Make sure it is the one you can LIVE with.
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Subscriber but first time commenter… strong family history of breast cancer inspired my mother to be tested prior to eventually passing away following a long battle with cancer. Later tested myself and determined that I am a BRCA1 carrier – although I also have a y-chromosome so that changes my personal outlook considerably. Greatest fear now is for my daughter, not myself. Two bothers – one tested and was negative, one didn’t get tested, so our family seems to have covered all the potential bases.
Happy to share more and discuss further if helpful. Certainly no easy answers.
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Normally, I’d want to enter some kind of probabilistic rubbish, given that I found you as a math blogger. That would an absurdity, so I’m offering you a hug and a prayer that the test for the known mutations come back negative, you can live your life, have children with someone you adore, and write the whole thing in a middle school to high school book on probability called “Would You Rather?” Then you fund a retroviral gene therapy with the proceeds that eliminates this scourge from the lives of women forever.
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Hello,
I am new to the MathTwitterBlogosphere and came across this post while exploring. So I apologize in advance for leaving a long comment when we don’t know each other at all, and feel free to mentally delete anything I say that’s not helpful. I’m also not sure from your post whether you received positive test results or were just worried that you might (not to downplay the awfulness of that feeling while it’s happening, but presumably by now you did get the results and they might have been negative).
My friend tested positive for this mutation several years ago. From what I saw of her decision process of whether to test and what to do next, including going with her to one appointment with a genetic counselor after her positive test, it helped her a lot to have time and mental space to personalize her decisions… which it sounds like you are already starting to do by realizing it is like a game of “Would You Rather,” where your “rather” might not be your friend’s or your relative’s.
My friend was 40 when she found she had Stage 2 (I think) ovarian cancer when she woke from surgery for abdominal pain to find the surgeons had removed her reproductive organs. She was single, childless, and not oriented toward having children, but having that final decision made for her so suddenly was jarring. Needless to say the statistics on ovarian cancer survival (I think she was told 50% chance of being alive in 5 years) were also sobering.
Skip ahead almost 6 years… very good news! After cancer treatments, she continued to be cancer-free for 5 years. But then she was advised to be tested for the BRCA mutation, and after some thought, felt she had to know about the breast cancer risk. Unfortunately it was positive.
Both my friend and I pride ourselves on being logical, rational people (we even became friends in college math) with strong moral values as feminists, and between those two things, I think maybe we started with something of an inclination that there was a “right” decision of what to do next. Definitely the risk assessment was a big part of her decision, but there are also so many important things that are personal. Just as one example, a lot of women apparently feel like it is empowering to basically get to design new breasts for post-mastectomy cosmetic surgery, and while that was TOTALLY not my friend’s style, there was a making-lemonade-out-of-lemons aspect to it that we could admire in other people. As another example, my friend had a relative who had had a mastectomy for breast cancer who helped her break down what parts of her high breast cancer risk were scariest to her personally among the long-term cancer risk, the treatments, the surgery, and the complications. (The part that stuck with us most was her relative’s summary, “Boobs are overrated!,” because it made us laugh. But that might be because we were all over 40.)
Although part of her felt it was ridiculous to have major surgery for an illness she probably didn’t have yet, in the end, she decided that the risk of breast cancer was high enough that she did not want to have it hanging over her head and risk future, more complicated and unpleasant surgery and treatments for cancer later, with less chance of success. So she did have the double mastectomy. She’s flat-chested now and looks great, and is still healthy (now about 9 years since the original cancer diagnosis). She seemed to me to be at peace with her decision even immediately after surgery, I think because it really was HER decision.
Anyway… my friend says if you wanted to get in touch I could pass on her contact info. So if that would help, please let me know. mswrightmathsci on gmail.
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