My mom, her mom and my moms only sister were all diagnosed with breast cancer - youngest age was around 63 I think. My gyne doc strongly encourages me to have my mom tested for the gene cause in case she is negative then I nor my 3 sisters would have to be tested. I've mentioned this to my mom and she claims that all her docs tell her she nor any of her daughters need to worry about being tested cause all 3 affected developed breast ca at an older age. She also called her insurance comp and they wont cover her being tested unless she gets an order from her doctor that the test is necessary to determine her health care and not anyone elses. I dont know if my insurance would cover and if I was positive I would not do what Jolie did but I would then be able to have all my mammmograms done under MRI instead of the regular way which is alot better at detecting masses. None of my sisters are worried. Am trying to decide where to go from here??? I have a young daughter to consider too.
Mamaduck....in response to your answer the brochure my doc gave me indicates that you could have an inherited risk for the gene if there are 2 breast cancers in the same person or on the same side of family at ANY age - we have 3.
Another edit sorry.....but wanted to state that my mom has never said that she doesnt want the test done - the fact that she asked her docs about it and had called her insurance comp only tells me she does want to help if she can. She has only relayed to me what her docs have said and insurance comp but like one said I dont really know what she is thinking/feeling. My doc only stated that if she were to test negative then none of us would have to worry about getting tested.
If I had that many cases of breast cancer in my family, I would definitely get tested. Fore warned is fore armed. Besides, knowing would keep me from worrying to death, do I or don't I have that gene.
A positive result for the BRCA test is seen in about 5% of the breast cancers and 10% of the ovarian cancers in all women.
A positive test tells only tells you that you have a significantly higher than average chance of developing breast cancer. But based on your history.... don't you know that already?
A negative result doesn't put you in the clear. At all. In fact, if your mom is negative you can STILL get breast cancer.
If your mom tests positive you have a 50% chance of having the mutation. So, even if you mom tests positive YOU would still have the test to tell anything about you.
So, what is your mom getting the test that she doesn''t want done really going to tell you about YOU? Not much.
If you want the test..... get the test. But don't make your mom get a test she doesn't want to get so that you can have results that aren't necessarily even going to impact your future health anyway.
ETA - I got your PM. I did understand that it's not that your mom is refusing to have the test... but she IS saying that both she and her Dr and her insurance are indicating that it's not really necessary, at her age, with her history for HER to have the test.
It would be simpler and more conclusive for YOU if YOU get the test. If you want to have an MRI instead of a mammogram then YOU pay for the BRCA test and then YOU will know whether or not YOU have the mutation on the BRCA gene. If your mom tests positive YOU still won't know if YOU have the gene mutation, because you only have a 50% chance of having the mutation if your mom tests positive.
I also want to reiterate that testing positive for the BRCA gene doesn't really tell you anything other than you have a higher chance than average of getting breast or ovarian cancer.... not that you WILL get cancer. So, what will you do with that information? If you are saying that you will get an MRI instead of a mammogram, then go have the test so you can have the MRI instead.
It really sounds like you want your mom to get the test so that you don't have to get the best but so that you can benefit from an MRI instead of a mammogram regardless of if YOU have the gene. Otherwise YOU would just go get the test, right?
My grandmother, my mother, my aunt on my mom's side, my sister. Heck of a lot of proof, eh? The thing is, my sister got tested for the BRACA gene and it came up negative.
So what I can do is be vigilant about self-exams, per doctors orders I get an MRI every other year and a regular mammogram the others, and then I hope.
The thing I've learned about getting diagnosed with the cancer gene is not about health insurance, but LIFE insurance. You can legally be denied any and all life insurance if it is known you carry the gene. So, if you are considering taking the test, please get your policy in order first.
Good luck with whatever you decide.
If I were you I would get the test. She's right in that insurance probably wouldn't cover it for her but I would imagine that you or one of your sisters would have a better chance of getting the test covered by insurance given your family history.
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If I were you I would get the test. She's right in that insurance probably wouldn't cover it for her but I would imagine that you or one of your sisters would have a better chance of getting the test covered by insurance given your family history.
I think you should get the test done yourself. If your mom tests positive, you have to get tested anyway. Since you seem to be the one who is most nervous - or at least most curious - about it, I think it makes sense for you to do the test. Once your results come in, the rest of your family can decide what they want to do. How expensive is the test? Can you afford it even if insurance doesn't cover it? I would have thought that, with the elevated risk/family history, you are more likely to be covered than someone with no known risk factors.
Also, 63 is not young, but it's not exceptionally old either. My mom is 63 and has a whole lot of years ahead of her. My kids and I are SO close to her that I would be devastated if she got sick today. I need her around for the next 20-30 years! So, if cancer was preventable/manageable, I'd definitely go for it at the "young" age of 63.
I just had this test last week, it is a $4000 test, my insurance covered most of it, and I have to pay $400. turns out I do not have the gene mutation. My mother and both my grandmothers died of ovarian cancer, which is why I had the test done. I'm glad I had it done tho. Apparently most insurances will cover it as long as your doctor authorizes the test in writing. Make sure you get that done, it would be an expensive mistake!
My mom had breast cancer, also. I asked my doctor, and she told me the exact same thing your mother's doctor told her. It's not really a genetic concern if the mother's breast cancer is post-menopausal.
I would ask your own doctor for advice.
I don't understand why your mom wouldn't want to be tested. She's already had cancer so not as if now she'll have to live with a fear she didn't have before if she has the gene. I'm sure my mom would happily do it for my sister and I... Why not know? This is life and death... If it's the cost, you and your sisters should split it. I was just talkign with friends about how we wish there were more diagnostic tests for cancer. None of us have a history of breast cancer anywhere but if we did, we'd be getting every test possible...
IF my insurance would cover the test I would get it. Even if I was not going to have a preventative mastectomy it would just be nice to know if I am at increased risk. But if you can't get it then I guess just be as vigilant as you would be if you did test positive.
But I find it strange your mothers doctor does not think she should get it, with her family history he should be insisting on it. I would wonder if he is the best doctor for her.
find out how much the test is and then you and your sisters can split the cost for your mom to have it done.
i agree that being able to have MRIs would be a great diagnostic tool to have. wish i could do it!
khairete
S.
Can your doctor order the test for you? I do not think it is your place nor YOUR doctor's to tell your mom to get tested.
I hope this tone does not sound mean. I am adopted and have never dealt with this (a doctoring wanting a relative to get a test instead of his patient). You are your doctor's patient. Your mother has a right to live without knowing or could convince her doctor to order the test. You may not know what your mom and HER doctor discuss. You only know what she tells you.
Edit: Jenny C. made a good point about Life Insurance.
I lost my Mom to breast cancer 4 years ago April. She was adopted and I have never had a relationship with my father, I know zero about my genetic/family medical history and I have decided NOT to be tested for the gene and here is why:
Yes, women with a family history of breast cancer are at a higher risk for diagnosis, BUT they only make up 20% of new patients, meaning that 80% of women who are diagnosed with breast cancer do NOT have a family history. Just because someone in your family has had breast cancer does not mean you too will have breast cancer.
If you test positive for the gene mutation that causes breast cancer it does not mean you will get breast cancer. Alternatively, testing negative does not mean you will not get breast cancer. All it means is that you are at a higher risk.......let me put it to you this way......does everyone who smokes ciggaretes get lung cancer? No. It just puts you at a higher risk.
What you need to figure out for yourself is what you are willing to do IF you test positive for the mutation, keeping in mind you might never actually get breast cancer? Are you willing to get radical treatment because of a possible what if/maybe diagnosis? If yes, why do it now? The treatment would be the same now (prediagnosis) vs. then (post diagnosis). If your answer is no, you would not go for radical treatment (mastectomy, hysterectomy, etc.) then why would you do the test? Do you want to sit around and wait to get a disease that might not ever happen?
My sister had breast cancer and my doc suggested she get tested for the gene. This would prevent me from being denied due to preexisting condition (though that is suposed to be going away with the new healthcare act). Her reponse was that since she had cancer, she has the gene. Very misinformed. Anyway, supposedly my mom's sister had cancer a long time ago (per my sister) so that makes it definite (per my sister). I do not plan to get tested. However, if every generation in my family had cancer, I would get tested so that I could take those extra steps to detect anything should it come up.
Take advantage and get the test. Either way, knowledge is power!
