The thread about circumcision brought up something that I have been thinking about lately. Breast cancer. My mom had breast cancer when I was a teen, and it was the hardest thing I have ever had to go through. Once my mom was in remission, she then had a preventative hysterectomy at the recommendation of her oncologist.
My doctor wants to send me for testing to see if I carry the gene thought to predict breast cancer. H and I have been talking a lot about whether I should get tested, and if it shows up, what would that mean for me. I was reading that if it shows up as positive I could have an up to 60 % chance of getting breast cancer or ovarian cancer. Also being discussed is whether or not the risk is high enough to consider a pre-emptive double mastectomy and breast reconstruction. I'm open to the idea, and my H wouldn't really have an opinion other than wanting what is best for me and our family. I know there is a whole emotional side to this to consider how it would effect us.
I am not even going to seriously entertain the idea of going for testing or doing any of this until we are done having kids and I am done with breast feeding forever, but it is just something that has been on my mind lately.
So, WWMLD in this situation? Go for the testing? Look into the surgery if it comes to that? Discuss.
Post by mommyneedswine on Jun 28, 2012 14:28:39 GMT -5
I would test and do the surgery.
I believe there is a big emotional factor, but that one it much easier to handle then the blow of actually having cancer. While this won't 100% guarantee you won't ever be affected, it will significantly lower your risk.
"Why would you ruin perfectly good peanuts by adding candy corn? That's like saying hey, I have these awesome nachos, guess I better add some dryer lint." - Nonny
One thing at a time. No need to have the surgery question up for consideration if you haven't even been tested.
If you test positive, your insurance company should cover more extensive screening, which means that a cancer could be caught much earlier than it might otherwise would be. Ovarian cancer is rarely screened for at all presently, which is why most are not caught until stage 4. Something to consider. It's also a reason that you would not want to put off testing.
Something else to consider is that if you plan to get life insurance ever, you should do that before you test.
I really don't understand why having kids would make you put off being testing or considering being tested. The gene is either there or not whether you know it or not.
Now that we have the pre-existing condition protection, I would definitely get tested.
yep, prior to this I would have cautioned against it.
My daughter at 18 has three indicators for getting the BRCA test and our insurance 100% covered it being done but could not guarantee it being held against her later on...now it appears we can start the discussion again.
One thing at a time. No need to have the surgery question up for consideration if you haven't even been tested.
If you test positive, your insurance company should cover more extensive screening, which means that a cancer could be caught much earlier than it might otherwise would be. Ovarian cancer is rarely screened for at all presently, which is why most are not caught until stage 4. Something to consider. It's also a reason that you would not want to put off testing.
Something else to consider is that if you plan to get life insurance ever, you should do that before you test.
I really don't understand why having kids would make you put off being testing or considering being tested. The gene is either there or not whether you know it or not.
I guess feel like if I'm not willing to have the surgery, there is not as much of a reason to have the testing done. It won't change how aware I am of my body how diligent I am about mammograms/self checks and the like. Which is also why I wouldn't get tested until I am ready to proceed with some action, and that wouldn't be until I am done nursing babies.
I already have life insurance, and I am Canadian so I'm not that worried about the health insurance aspect of it.
That is a great point about ovarian cancer though, that alone might be reason enough to pursue the testing.
I did a rotation in medical genetics and shadowed the Drs and councilors who were talking with people about this exact thing. What I took away from it is: we don't know enough about all the risk factors for breast cancer. Yes, some genes are associated, but the test only looks for a few mutations. If you get a negative result, it doesn't mean you aren't still at a high risk because your mom had it at a young age. Getting a positive result is somewhat more 'helpful', but isn't a guarantee either. It's still an art more than a science.
I did a rotation in medical genetics and shadowed the Drs and councilors who were talking with people about this exact thing. What I took away from it is: we don't know enough about all the risk factors for breast cancer. Yes, some genes are associated, but the test only looks for a few mutations. If you get a negative result, it doesn't mean you aren't still at a high risk because your mom had it at a young age. Getting a positive result is somewhat more 'helpful', but isn't a guarantee either. It's still an art more than a science.
Trying hard not to respond to this with "duh." I don't think anyone thinks that they are home free if the test comes back negative.
I'm actually sitting in your boat with you. Research has shown that the gene is usually stronger every other generation, my grandmother and 3 of her siblings all had breast cancer, 4 out of the 5 died from the cancer or from complications (my grandmother died because a blood clot formed from her mastectomy surgery).
Some days I desperately want the test, other days I do not. I know that if I did have a positive test I would absolutely get the surgery done (hello smaller tatas). I believe they give you the option to get the surgery done immediately or once you reach a certain age so that you have the chance to have children.
Other days I don't want the test because I know that if I tested positive I would get the surgery, and ultimately the surgery killed my grandmother. Without the surgery she might still be alive. And that is a hard truth to swallow. Not I know that the surgery has gotten better since she had hers (Fall 1997) but blood clots still form, and how are they to know it won't happen to me?
I am so happy to hear that your mother is in remission and hope that she is healthy and happy! If you ever need someone to talk to or to get angry at cancer with let me know, because believe me cancer fucking sucks.
I did a rotation in medical genetics and shadowed the Drs and councilors who were talking with people about this exact thing. What I took away from it is: we don't know enough about all the risk factors for breast cancer. Yes, some genes are associated, but the test only looks for a few mutations. If you get a negative result, it doesn't mean you aren't still at a high risk because your mom had it at a young age. Getting a positive result is somewhat more 'helpful', but isn't a guarantee either. It's still an art more than a science.
i agree w/ this but i would still get the testing if your mom didn't get it done. if you test positive there will be options open for surgery or more in depth preventative care.
my mom got tested during her first breast cancer occurrence, and the result was negative for that particular gene. but i feel that i am more than likely going to deal w/ it in my lifetime, as both of my moms sisters, my maternal grandmother (and all 3 of her sisters,) and maternal g-grandmother have all had breast cancer. i have briefly looked in to pre-emptive mastectomy, but b/c i don't have the specified gene they won't go any further with me.
I did a rotation in medical genetics and shadowed the Drs and councilors who were talking with people about this exact thing. What I took away from it is: we don't know enough about all the risk factors for breast cancer. Yes, some genes are associated, but the test only looks for a few mutations. If you get a negative result, it doesn't mean you aren't still at a high risk because your mom had it at a young age. Getting a positive result is somewhat more 'helpful', but isn't a guarantee either. It's still an art more than a science.
Trying hard not to respond to this with "duh." I don't think anyone thinks that they are home free if the test comes back negative.
well, that wasn't my experience when I was there with patients, seriously. I know it sounds obvious, but people who are scared because all the women in their family have breast cancer put a lot of faith in these tests.
And I don't know what I would do. My sister is a Type 1 diabetic and there was some testing they wanted to do to see if I was more predisposed to also get it (this was 15 years ago so I have no idea what they were looking for or if this is even something they would do anymore). I chose not to have it done. But for cancer, I might have the test.
I'd get cancer insurance through Aflac, then I would test.
What would the cancer insurance cover?
I'm planning on asking my doctor about it the next time I'm in. Both grandmothers of mine had breast cancer as did one of my aunts. We're done having kids and my breasts are way too big for my liking anyway (though H loves them, lol) so if I tested positive and insurance would cover everything I would 100% get a double mastectomy and breast reconstruction.
I was in your boat right after DD was born. My mom had breast cancer and a preventative hysterectormy four years later. She was tested for the BRCA1 and BRCA2 gene mutations, and she tested positive for BRCA2.
I wasn't ready to be tested right away, because if I tested positive I would have had to have mammograms twice yearly, which would have meant that I would have to have stopped breastfeeding DD, and probably wouldn't be able to breastfeed future children. However, my doctor told me that should I choose not to be tested, I should be screened as if I had already tested positive for the gene mutation as a precautionary measure. So, either way, I wasn't going to get away with pretending I didn't know about the possibility I carried the mutation. Either way I would have been subjected to the screenings, so I ultimately decided to get tested.
When DD was 11 months old, I went in for the test, believing for myself that knowledge is power, and that my daughter needs a healthy, living mother. For her sake, I decided to go ahead with the testing.
I tested negative. The two week wait was pure anguish and torture. I am beyond grateful that I do not carry the gene mutation. I'm thankful as well that since I do not carry the mutation, I cannot pass it on to DD. This was another reason I decided to get tested, ultimately, to know what her chances are of having the mutation.
Before even having the genetic testing done, I explored my options very carefully, had the test come back +. The doctors at the university here were absolutely not advocates for preventative surgery in my 30's. They said that they would, in my case, screen with mammograms every 6 months, and do specialized ovarian and uterine cancer screenings every 6 months. Once I was past childbearing age, I would have the option of dicussing preventative surgery, but they made it very clear that there was no rush to remove breast tissue nor have a hysterectomy.
The decision to get tested - and the wait - was one of the most emotionally trying times of my life, especially with a new baby. It's not easy, and there's no one right answer.
I'm happy to talk with you anytime. Feel free to PM me if you'd like to chat.
One thing at a time. No need to have the surgery question up for consideration if you haven't even been tested.
If you test positive, your insurance company should cover more extensive screening, which means that a cancer could be caught much earlier than it might otherwise would be. Ovarian cancer is rarely screened for at all presently, which is why most are not caught until stage 4. Something to consider. It's also a reason that you would not want to put off testing.
Something else to consider is that if you plan to get life insurance ever, you should do that before you test.
I really don't understand why having kids would make you put off being testing or considering being tested. The gene is either there or not whether you know it or not.
I guess feel like if I'm not willing to have the surgery, there is not as much of a reason to have the testing done. It won't change how aware I am of my body how diligent I am about mammograms/self checks and the like. Which is also why I wouldn't get tested until I am ready to proceed with some action, and that wouldn't be until I am done nursing babies.
I already have life insurance, and I am Canadian so I'm not that worried about the health insurance aspect of it.
That is a great point about ovarian cancer though, that alone might be reason enough to pursue the testing.
Lucky Canadian.
Regarding your current screening practices, I would think the opposite- that it wouldn't change your screening if it is negative, but that it most definitely would if it came out to be positive. You would want to be more vigilant and you would want to start that as soon as possible.
I was in your boat right after DD was born. My mom had breast cancer and a preventative hysterectormy four years later. She was tested for the BRCA1 and BRCA2 gene mutations, and she tested positive for BRCA2.
I wasn't ready to be tested right away, because if I tested positive I would have had to have mammograms twice yearly, which would have meant that I would have to have stopped breastfeeding DD, and probably wouldn't be able to breastfeed future children. However, my doctor told me that should I choose not to be tested, I should be screened as if I had already tested positive for the gene mutation as a precautionary measure. So, either way, I wasn't going to get away with pretending I didn't know about the possibility I carried the mutation. Either way I would have been subjected to the screenings, so I ultimately decided to get tested.
When DD was 11 months old, I went in for the test, believing for myself that knowledge is power, and that my daughter needs a healthy, living mother. For her sake, I decided to go ahead with the testing.
I tested negative. The two week wait was pure anguish and torture. I am beyond grateful that I do not carry the gene mutation. I'm thankful as well that since I do not carry the mutation, I cannot pass it on to DD. This was another reason I decided to get tested, ultimately, to know what her chances are of having the mutation.
Before even having the genetic testing done, I explored my options very carefully, had the test come back +. The doctors at the university here were absolutely not advocates for preventative surgery in my 30's. They said that they would, in my case, screen with mammograms every 6 months, and do specialized ovarian and uterine cancer screenings every 6 months. Once I was past childbearing age, I would have the option of dicussing preventative surgery, but they made it very clear that there was no rush to remove breast tissue nor have a hysterectomy.
The decision to get tested - and the wait - was one of the most emotionally trying times of my life, especially with a new baby. It's not easy, and there's no one right answer.
I'm happy to talk with you anytime. Feel free to PM me if you'd like to chat.
That's an excellent point, I didn't even think about finding out so that I could know if I possibly passed it on to my daughters.
For me once I had kids I'd want to know to be able to protect any hypothetical daughters, granddaughters.
Even if you choose to not have the surgery IF you had a positive diagnosis it would set your daughters up to know that they needed to be tested. If it turns out you aren't a carrier your kids will have the peace of mind of knowing they also aren't carriers.
Regarding your current screening practices, I would think the opposite- that it wouldn't change your screening if it is negative, but that it most definitely would if it came out to be positive. You would want to be more vigilant and you would want to start that as soon as possible.
yes - family history is still a HUGE factor, even if the test is negative.
nadasteph, there is absolutely a reason to get tested even if you're not willing to have the surgery (now or ever.) There are many other, more sophisticated measures for screening and your care provider will discuss them with you if/when you decide to get tested.
Has your mother been tested? If she has not, that's probably a good place to start. If she does not have the mutation, you likely won't have it.
Testing is very expensive, especially if you're testing for both BRCA1 and BRCA2 gene mutations. If the cancer patient (your mother) has the gene mutation, then tests + for a mutation, your care provider can test you for that one particular mutation, vs both.
Here in the US at least, there is recent legislation that prevents discrimination against patients with genetic predispositions from obtaining insurance for the disease to which they have been genetically predisposed to.