is ignorance bliss?

Posted on Nov 9, 2011 in Lifestyle

Every time I go to the doctor, when I get to the point on the form about family history, I let out a little sigh as I check every box surrounding “cancer”. My family history is, if nothing else, impressive. And the most damning part of my history is the fact that my mom was diagnosed with breast cancer at a young age. Thankfully, she kicked cancer’s ass and has been cancer-free since I was in middle school, but the truth is, that part of our family storybook adds a big black mark in the risk factor column for me.

Whenever I’m on the exam table and the doctor starts talking me through my risk of breast cancer, I definitely get a “dead man walking” vibe. They’ve resolved that I’m going to end up with it. They’ve resolved there is nothing I can do. For folks whose entire profession is science-based, they are depending an awful lot on destiny. I hear things like, “Okay, well, you’ll need to start getting mammograms at the age of 30 just so we can catch it early when—oops, I mean if—you have an issue.” It’s enough to make a girl feel like she’s totally and completely optionless.

But that couldn’t be further from the truth. I can exercise. I can drink water. I can eat real foods. I can avoid estrogenic foods (soy is a big one for me). I can get enough sleep. I can hug my husband. I can play with my dog. I can not smoke. I can change my destiny. Even if a lot of the doctors seem to think otherwise.

Another thing I can do is have genetic testing done. Now-a-days, folks can shell out a couple hundred dollars and get tested for what has been nicknamed the “breast cancer gene”. The test looks at two different tumor suppressing genes. If a woman has a mutation in one or both of these genes, she is five times more likely to get breast cancer than a woman without the mutations. That’s a hefty dose of added risk, in my opinion.

I’ve waffled about the concept of genetic testing. On one hand, I’m a big fan of knowing all the information. I love research and it seems like there is something empowering about just knowing. After all, it’s hard to really create a plan of prevention when you don’t even know exactly what you are up against.

But then, there is the other part of me that is understandably terrified of knowing. And honestly, I struggle to see the benefits of knowing outweighing the risks. Sure, knowing would be empowering, but would it really change anything I’m doing if I did test positive for the mutations? Would I exercise more? Probably not. Would I eat even less soy? Probably not. Would knowing I have the mutation stop me from having kids (and possibly passing it along)? Maybe, but probably not. Really, the only prevention option that I’m not doing that would be on the table, would be to have a prophylactic mastectomy (removal of both, healthy breasts) and I’m certainly not digging that plan. I even see downsides to knowing that I am negative for the mutation. Would that give me a false sense of security and make me less vigilant with my screening and healthy lifestyle?

wapehani stock

You can probably tell that, as for now, I’m shying away from the idea of testing. But I do have this internal dialogue almost annually. I weigh the pros and cons and usually come out against testing myself, but some day that might change. For now, I’m just going to keep on being vigilant and aware of my body. Maybe in the future I’ll feel comfortable enough to become genetically aware, too.

How do you feel about genetic testing? Have you had it done?

40 Comments

  1. As always, you are bringing up an interesting topic. Disclaimer: I have super strong, deep beliefs in two things: 1. your body is amazing and perfect and doesn’t have to inevitably succumb to cancer because it is in your genes (google Epigentics, cause DNA is not necessarily your destiny, chica!) 2. Cancer is profitable (not a popular notion, but you are way too smart and savvy to buy into all this crap… just consider following the money. It is disheartening to think the world is so malevolent, but unfortunately, so many of the key players in our lives are in bed with one another and they’re sneaky. Please don’t be too offended by what I said. I’m a good person, I swear. I just think it is so important to think critically about the media, marketing, and even sometimes our beloved government.

    Anyhow, in response to your question about genetic screening. My husband and I are planning to start a family in the near future. We are both Jewish and of Eastern European descent. There are like a ton of genetic diseases that our kids could potentially have, but the odds are VERY low. My sister and my sisters-in-law have both already had multiple children and were screened for various numbers of diseases. I recently spoke with my sister about genetic screening and she mentioned that she was screened before having her first child for the 3 most common genetic diseases and wasn’t a carrier for any of them. My sister and I live in different states, and my sister was screened at her OBGYN office, according to the medically accepted standard of 3 particular diseases. Here in Atlanta, there is a big project in the Jewish community where they provide free of charge screening for 19 genetic diseases. 19 is a huge number! I was reading through the different diseases and they were things I had never ever heard of and the odds of having a baby with the disease were super low. I started to question whether or not I want to know any of this information beyond what is commonly screened for in the medical community. I think sometimes less is more, but you have to go with your gut. In the end, my husband and I have resolved to do the screening for the 3 most common diseases.

    So, here’s the thing… you could get tested for BRCA and not have the mutation, but it is no guarantee that you won’t get cancer, breast or otherwise. I think the best, most responsible choice is to continue taking good care of yourself, eating whole, clean, nutritious foods and moving your body. Seriously, read about Epigenetics, it is super interesting stuff and makes me feel optimistic! : )

    • “I think the best, most responsible choice is to continue taking good care of yourself, eating whole, clean, nutritious foods and moving your body. ”

      Oh don’t you worry, testing or not, that will happen. :)

  2. I think it depends on more history than just your mother. Has anyone else in your family had a problem with it?

    My Aunt (not blood related) had a terrible history littered with breast cancer that affected nearly every woman in her family and, unfortunately, passed away at the age of 46 from it. Because of that, my cousin got tested and tested positive for the mutation. She went ahead and had a double mastectomy with reconstructive surgery and has never regretted it a day in her life.

    Just food for thought!

    • Yes, there has been quite a bit of cancer throughout my family (on both sides). My Mama is just the one that doctors really latch onto (first-degree relative and the young age she was diagnosed).

      Thanks for telling me the story about your cousin. Hearing real world examples is always helpful. :)

  3. When doctors hear that both of my grandmothers had breast cancer, they get an almost knowing look. When they hear that they were both over 80 when it happened, it’s almost like they are disappointed it would be unwarranted to do extra tests now, when I am 32. I’m sure someday I, too, will get breast cancer, but with any luck I’ll be as old as them and “beat” the disease like they both did (they are still alive a few years out anyway with no recurrence, but cancer moves slower in old people from what I understand). I will not be getting tested, though I would gladly have a double mastectomy if they thought I was at risk before the age of 50. I’m a DDD+ and these things have been nothing but trouble anyway.

    • “it’s almost like they are disappointed”

      Oh gosh, THIS. I am amazed at how interested or disinterested a doctor becomes in me based on my family history. I tell them my Mom had cancer at a young age, I get complete, undivided, “OMG you’re gonna die” doctor. I then tell them that she beat it and has been cancer free for over a decade? You can almost see the air being taken out of their sails. I guess, as a doctor, that’s the only way to cope with all the terrible things you see daily.

  4. One question–

    What would you change about your life if you knew definitely you had the gene?

    • See paragraph number six, Daddy-o.

  5. You know, I’m really glad you brought this up, because it is something I have thought about a TON. My mom has an eye condition(RP) that has caused her to lose her sight completely. When I was younger, she had sight, and as she has gotten older, her sight is now gone completely. Her mother had it too(again, completely blind). So of course, any of us have the potential to carry the gene. Again, it’s one of those diseases(I suck at biology/medical terms) where even if you carry the gene, you are not necesarily going to go blind. So I’ve toyed with the idea of getting tested for this gene, but I am terrified. I don’t know if I’d be better off knowing, “gee I might go blind one day b/c I carry the gene” or if it’d put me at ease knowing. Ugh. So…I feel ya completely. I don’t have any answers, but thanks for bringing this topic up as it is close to me right now.

    • And also, my aunt(her sister) has no signs of blindness so far(though I’m not sure if she carries the gene or not). So this really toys with me!

    • One of the questions I keep asking myself everytime this comes up (and might help you) is, “What would I do differently if I got a positive result?” and right now? The answer is not much, if anything. I may entertain the mastectomy if I had doctor’s who suggested it, but even that would be a long shot. Same with you. If you knew you carried the gene, would there be anything you’d do differently?

  6. I don’t think that I would get tested. If you do get tested and test positive and aren’t going to have the double mastectomy, you will live your life in fear of the possibility. If you test negative, there is still a chance you could end up with it anyway (you just wouldn’t be AS likely to).

    I feel like regular checkups, mammograms, and of course, checking yourself often for abnormalities, is the best way to go, but that’s just my opinion!

    • I think the testing negative scenario is almost as scary as testing positing. Because it’d be human nature to become a bit more complacent if you test negative, but you still COULD get it.

      • Yeah, and there is also the other side of the spectrum. You might test positive for it and live the rest of your life in fear, and then never actually get it. Nobody knows what really causes cancer. Genetics are just one part of the equation!

  7. I have not been tested for the BC gene, but I plan on it once I have better insurance after I finish my degree. However, one of my friends was tested a few years ago–at the age of 27, had the gene, had a double mastectomy, got a great reconstructive boob job and says it was the best decision she ever made. (Her grandmother and 2 aunts died from breast cancer and her mom is a survivor.) Her older sister has not been tested and says she doesn’t want to know.
    I think it just depends on how you would react if you found out you had the gene. I am not particularly in love with my breasts. They’re fine, but I could live without them. So a prophylactic mastectomy is not that scary to me. I can certainly understand why that would not be an option for some people.
    The best defense though is REGULAR SELF EXAMS!! My neighbor was diagnosed with stage 4 breast cancer w/ 5 involved lymph clusters in July and she was one of the healthiest, fittest, most active people I know. Good nutrition may lower your risk some, but it can’t save you. Catching it early by knowing your body and checking your breasts and armpits for lumps every month can!

    • “I think it just depends on how you would react if you found out you had the gene.”

      This is so true. I hope it didn’t come off as me saying that there is one right or wrong answer, because there definitely isn’t! And I totally agree with self exams. I think a combo of prevention (good nutrition, fitness, lifestyle) and early detection (self exams, doctor’s exams, mammograms) is SO powerful and women often forget how much control they have over their own destiny just in those things alone.

  8. Interesting you should ask this. At my last (horrible) ENT appointment, I was instructed to meet with a genetic specialist to find out if my daughter has the hearing loss gene. He also cautioned me that while it is currently not legal for the genetic testing information to be used against you, it is impossible to tell if it will be in the future and with the way things are going? I don’t trust the future on that one.

    Plus, honestly? Hearing loss? Cancer? Okay, so we genetic test families to the point of avoiding the “bad” genes…I picture a group of humans in the future who are bred to be perfect. That seems to work well for dogs…or not. Cancer sucks, there is no doubt about it but I don’t know that finding a special gene would help a person, really. You’d still have to be vigilant on screenings and you would still get cancer someday. Same thing with hearing loss…so we know my daughter carries the gene? Now what? We worry and treat her differently? Or we let her lead a normal life and if she does have a hearing loss, we help her get through it and move on?

    I know how you feel with the family history of cancer. I have a laundry list of cancer in my family as well and get “the look” from doctors.

    • I guess it also all depends on how you personally handle knowing or not knowing. There are some people that just the possibility of their daughter having genetic issues with her hearing would be too much to handle. Me? I’d say I fall on the same side as you. Sometimes ignorance is bliss, just as long as you aren’t completely oblivious in your ignorance.

  9. Cancer isn’t a worry for me as far as family history goes, but mental disorders are a HUGE on on my mother’s side, and I’m right at the age where they really start to hit the brain. Therefore, you could say I’m living a life of constant paranoia, especially because those can be pretty difficult to diagnose. I’m just hoping I’ll make it through my 20s unscathed so I can start worrying about diabetes, yay! (I’m a vegetarian who eats a balanced diet and I run 4-5 times a week, though, so that one isn’t as stressful to me).

    • It seems like everyone has something, don’t they? Gosh, I hope you make it through your 20s unscathed, too. :)

  10. I understand where you are coming from. My Mom had breast cancer at 41, and then had a second (the doctor’s same completely new occurrence) of breast cancer at 43. My Dad has medullary thyroid cancer (diagnosed at 50) and just had surgery for a second independent oral cancer (diagnosed at 52). Now I am doing everything in my power to take care of my body because that is something I can control, my family history is note something that will change. As a nursing student health promotion is huge and that is being aware of your risks and mediating where you can. Here’s hoping all our efforts pay off and should we ever face it that the work we put in now makes us strong enough to fight!

    • Here, here!

  11. My mom passed away this summer of a genetic disease that I have somewhere between a 25 and 50% chance of getting. The doctors told my siblings and I that we could do genetic testing to find out if we would get it … but in this case there’s no treatment and no cure. So I figured, why would I? If there’s nothing they can do to stop it, slow it down or cure it, and knowing that a positive diagnosis would weigh heavily on me, I decided against it. I’m aware of it and I can look for the warning signs and if they show up I’ll know what rare disease to tell my doctors I have, but otherwise I don’t feel the need.

    In the case of cancer where there are treatments out there, I still don’t think I’d want to know before I actually got it. You’re smart, and you’re making sure you’re screened and tested and that’s all you can do. (I mean, I guess you could undergo a radical procedure a la Christina Applegate, but …)

    • I definitely think having no treatment options would completely block the idea of genetic testing for me. If there is nothing I can do, why would I want to know?

  12. If I could afford it I would definitly get tested for the top diseases. My family doesn’t have much disease at all, except for one or two rare ones, so I wouldn’t be testing for anything specific. Therefore if I did test positive for anything, then I would start educating myself about the prevention immediately. I am only 21 so I’ve got a long way until anything would probably show up, but knowing earlier is better. I don’t think it would bother me, because like I said earlier, my family doesn’t have much disease at all, so chances are even if I tested positive them maybe it wouldn’t show up anyways. I eat well and workout. So in conclusion, I would actually like to get the test.

    • I can definitely understand that, especially if your risk is low. It would almost be like getting blindsided. It is so engrained in our brains that family history means SO much, that I assume if you don’t have family history, you can become a bit complacent.

  13. You’re absolutely right, what we eat can play a huge role in whether we will develop cancer in the future. Only you can know what’s best for you when it comes to testing. Here’s to a healthy, cancer free future! And bless your mom for beating it!

    • Thanks so much! I definitely feel like eating the right foods is a powerful weapon that a lot of people forget about. :)

  14. I study genetics at university, and I can tell you that the entire field of genetics is a can of worms. It sounds simple enough that mutation to a particular gene increases your risk of developing cancer in the future, but when it comes to complex disease (such as cancer) things are simply not that simple — there are so many other things that have to work in unison for the prediction to become reality. I think lots of doctors forget about that. Having a particular mutation does not equal disease. I think you’re making a good choice putting up testing. It creates a lot of unnecessary anxiety that won’t be productive. :)

    (Everyone in my family ends up with cancer–but I don’t think twice about it.)

    • Thank you SO much for this insight!

  15. I think that I would rather not know. I would like to live my life in such a way that I am taking the best care of myself and I think that if I knew that I was going to get cancer (if the test was positive), it would add a lot of unnecessary stress and worry about when it’s going to happen.

    • I even wonder if the stress of knowing would cause issues, you know? So many diseases are so closely tied to stress levels now-a-days.

  16. i have a friend who’s husband has a family history of cancer that’s quite large. she wants him to get the test, he doesn’t. i agree with him. why? what would it change? she is a type a and if that test came back positive for the gene i would not want to live in that house.

    • I definitely think figuring out how you and your family would personally react to the results is half of the decision making process. I’d imagine with a Type A personality, every single twinge would need to be researched and checked out. Not a good way to live!

  17. Hi Cassie,

    My mom died from breast cancer (well, it started as breast cancer and spread from there) when she was 59 and there is a lot of cancer in my extended family as well. Before my mom died, she was tested for the BRAC gene (I think that’s correct…). Surprisingly, she didn’t have it, so I have never been tested. Maybe this is something your mom would consider doing as well? If she doesn’t have this gene, then you don’t have to worry quite as much. It could be a good intermediary step for you?

    • Ooh, that’s a great idea!

  18. My mom passed away from breast cancer so I always have it in the back of my mind that I could be at risk. She had her first instance when she was about 40 years old and then it came back in her 50s.

    Like Rikk says, getting the genetic test is no guarantee that you will or won’t get breast cancer. You already know that you are at higher risk than other women, so why bother making yourself worry more (or possibly less) than you should.

    Another point to consider regarding getting your testing is insurance. Buying Life insurance could cost you a hell of a lot more if your medical records show a positive test.

    • I’d never thought about life insurance. That’s a great point.

  19. I was diagnosed with breast cancer at age 29. I love Josephine’s comment above, I completely agree 100%. That being said – I have had the genetic testing done, mainly for my mom and my sister and other extended family members because my insurance would pay for it – theirs wouldn’t – and – like Samantha said above – I didn’t want them to have the black mark on their record for life insurance purposes. Guess what? I did not have the mutation, no gene issue here… THEN guess what? my mom was diagnosed in September of this year. coincidence? or genetic mutations that have not been “tapped” to be tested?
    Disclaimer – I’m not a doctor, but I think you ARE being pro-active about it and aware – going to your doctor regularly, watching for changes in your breasts (I had no lump) – and doing self exams regularly. I would also get a baseline mammogram now (my sister had hers done at 25 when I was diagnosed and insurance paid for it), so you having a family history should help with getting some coverage for it, no? You are making healthy lifestyle choices – which I think can’t hurt one bit.
    Life is to much fun to not be happy, regardless of a diagnosis, a worry or a gene you may or may not carry. LAUGH EVERY DAY and I gauge what I do in life on how much fun I can possibly have!! ;) LIVE!

    • Thank you so much for your story Erin. My best friend from HS was diagnosed at 23. So many people think it is an older woman’s disease, but that is changing. Glad you are doing okay!

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