My mother and my maternal grandmother are breast cancer survivors. Early detection was key in both cases.
I’m aware that my familly history significantly increases my chances of developing breast cancer. As I’m no spring chicken (I’m 29) and I’m a mother, I’ve been thinking about undergoing genetic testing to determine if I have mutation in the known breast-cancer causing genes.
I have a few questions:
Have you or has anyone you know undergone genetic testing to determine their chances of developing breast cancer? What was the outcome? Did it change your/his/her quality of life?
Should I even bother? Are my chances so high for developing breast cancer that I should just plan accordingly?
Can the results be used against me in any way? Do I have to submit the results to my life insurance company? Will I have to submit the results should I decide to increase my life insurance or get life insurance with a new company?
As usual, I welcome your answers and any additional questions I haven’t thought of.
Juanita - In my neck of the woods (ct) we call it being pro-active. Both myself and my wife have had genetic testing to see if we are A) Compatable for having children - yes we are. B) to see if certain mutations exist in either one of us, that may hinder our babies growing up to be normal and healthy. We don’t have any mutations.
My grandmother lived to the ripe old age of 94. There is no history of cancer on my father’s side but my aunt recently died from a large tumor in her brain.
To be quite honest, we were told that if we keep on top of our yearly exams, the genetic testing was not really worth it.
No we did not have to give any information to our life insurers.
Both my wife and I lead fairly healthy lives. I have high cholesterol but that can be dealt with through diet. My wife’s grandmother passed away from liver cancer, not sirosis.
If you stay proactive, have yearly pap’s and mamograms, you should be just fine…
IMHO the main question would be this: If you found that you carried the gene, what would you do differently? If those actions are things that you would do anyway, or that are good for you, then what’s the point? On the other hand, if you found you didn’t carry the gene, that still AFAIK does not make you in any way “immune” to the problem, so you’d be well advised to get the usual tests at recommended intervals anyway.
Now, if there were something you could do as a carrier that would otherwise be unnecessary, that would be a very valid reason. You need to ask yourself about the relative sadness you’d have if you were found positive vs. the relative relief you’d have if negative, vs. the anxiety you obviously feel now from not knowing at all. Only you can answer that.
For myself, if I knew I had an above-average risk of some disease but I couldn’t do anything about it, it would not really make much difference. I feel that one has to live with two diametrically opposed possibilities: 1. That you will live to be very, very old. 2. That you will get crushed by a 2-ton weight falling out of a 50-story building tomorrow and die instantly. In other words, plan responsibly for your old, old age and also enjoy each moment as if it were to be your last.
IIRC from reading up on this, only 10% of women who get breast cancer have the gene, so just b/c you have the gene doesn’t mean you’ll automatically get it.
If I were in the same situation you’re in, I wouldn’t bother. I’d not smoke, watch my weight, yada yada yada, however I would insist on lots of mammograms. (I knew one girl in school that had such a bad family history of breast cancer that at age 20 she was going to have to start having mammograms twice a year.)
IANAL but AFAIK it’s none of your life insurance company’s business if you were to be tested and find out that you did have the gene.
If you had, like, 5 generations of breast cancer in your family, I could maybe see where testing might be helpful. But 2 women does not a pattern make … especially if neither took care of themselves, ya know? I don’t know your mom or grandmother, of course, so you would know whether or not their lifestyles contributed to it (ex: smoking).
But if it would bring you peace to know for sure either way, do it.
Neither woman smokes or smoked. My grandmother was a nurse and took great care of herself. My mother, if anything, is guilty of under-eating. She almost fanatical about her health and is into a homeopathic lifestyle.
I don’t know about my great grandmother. She died before I was born and my grandmother doesn’t know if she had breast cancer.
I’ve read that mammograms for the purpose of early detection of small lumps before the age of thirty are pretty much useless. If I recall correctly, the breast tissue of a woman in her twenties is too dense (maybe) for effective mammograms. If I’m mistaken, I would love to know.
Well, I don’t know about genetic tests for breast cancer, but I’ve already had a test for the ovarian cancer “marker.” My Mom was diagnosed in January, and one of my father’s sisters passed away from ovarian cancer back in '91. Ovarian cancer often is without symptoms, or rather the symptoms are so vague that there are a number of things it could be. There is, however, a “marker” that they can test for. Fortunately, I did not have the marker, but will have to be tested every year for it, as well as have yearly trans-vaginal ultrasounds on top of the yearly OB-GYN check ups. Better to be on the safe side.
Those trans-vaginal ultrasounds are no picnic, folks! BTW, that’s the TMI bit.
Juanitatech- I am confronted with a very similar situation. My mother is an ovarian cancer survivor, and had genetic testing done to see if she carries the gene that predisposes one to get it. She does. In men this (as it was explained to me) can predispose us to other types of cancer, and perhaps more importantly can be passed down to my children. I do plan to get this done at some point for all the above reasons. BUT-
a word of advice from the person who did my mom’s screening:
If you are concerned about this information becoming known to your insurance carrier and possibly used against you, then you would be well advised to pay for it completely out of pocket and not involve insurance whatsoever. It will probably run a few hundred dollars, but peace of mind is cheap at that rate. I’d say get it done. Shell out the bux, and find a good outfit that understands your privacy concerns up front. Hope this helps and good luck.
krisolov…your mom is so lucky. As you know, Ovarian Cancer has a very bad prognosis. I am so thankful that your mom was one of the lucky ones.
** JuanitaTech**…
I lost my mom and my brother almost exactly one year apart from Pancreatic Cancer. I was (understandably) somewhat freaked out and had the “marker” done. Mine was normal, and the Oncologist didn’t think I needed to have it ANYWAY, as he said that Pancreatic Cancer is not genetically linked.
I am currently trying to decide if I should have the marker done annually. I have read conflicting reports…and I don’t know what to do. Some people who have the marker done annually and find that it changed have had their pancreas removed to prevent the possibility that they will develop this (usually a death sentence) cancer. If you do this, you become diabetic…with all the attendant problems. I don’t know if I would want to have this done anyway…so I don’t know if it is worth having the annual testing. Especially since the doc pooh-poohed the whole thing anyway.
JuanitaTech
If I had insurance, and they covered it (my parents have a policy that does not and out of pocket it’s over $1000 in this area,) I would have it done. The cancer history on my maternal side is much more extensive than seems to be the case in your family. I think it’d be worth it to know because:
My mom has had cervical cancer
Her father died of cancer (I’m not sure the kind, it was in his intestines and so on)
Her mom died of breast cancer
Two of her mom’s sisters died of breast cancer
The last surviving sister is recovering from surgery for breast cancer.
The sisters’ parents both died of cancer (I don’t know which kinds)
Three out of four of their grandparents also died of various cancers
And there’s a couple more cancer deaths I’m forgetting about.
So I’d like to know if I have the gene. I know it doesn’t mean I will get cancer if I do (or won’t if I don’t) but if I found that I do have the gene it would make me more…how do I put it…more motivated to insist that doctors are concerned with it too. It hardly seems plausable, I’m sure, but I’m fairly meek when it comes to talking to anyone who is the slightest bit intimidating, unless there’s a good reason to be assertive.
Right now I’m young, and I’m doing what I can to reduce my risks (no smoking, no drinking, taking nothing with synthetic hormones) but some day I’d like to know if I have the gene.