Genetic counselor weighs in...........

Hissy_Fitz

I met with perky Lisa, one of the genetic counselors at my Gyn/Oncologist's group, this AM. She ran down all the FAQs of BRCA testing. In a nutshell:

OVCA is not a common cancer, so if you have it, you should consider genetic testing if there is ANY type of female cancer in your family's medical history. If you have a family history of OVCA or BC, even a third degree instance (great aunt, for example, or first cousin), you should definitely think about genetic testing, and most insurance carriers will, in that instance, pay for it. Medicare will pay 100% if you have OVCA and a single case of ovarian or breast cancer before the age of 50 in your family, and you don't have to document it, either. It's an honor system. (I had a great aunt who had both breasts removed back in the 1940's or 50's. She is long dead (not from BC, however) and there is no way to check, but I think she was under 50 at diagnosis. My insurance company is paying 100% for the test, based on this information.)

If you are positive, they recommend an MRI of your breasts every six months. That's if you don't elect to have them removed. BRCA positive women have an 87% chance of contracting breast cancer. Usually, the BC presents first (before OVCA), in which case they recommend a total hysterectomy for women who do not want to have children. In my case - OVCA confirmed - they would not discourage me from having a preventative double mastectomy, and I definitely would. The genetic counselor said she has seen every reaction in the book, from "No way are they taking off my boobs," to "How soon can we schedule the surgery?" She does not hard-sell any particular route, but she will tell you that she had a BC patient recently (BRCA positive) whose daughter (in her 30's) was tested and found to be positive, as well. She elected to have her breasts removed, even after a "clean" diagnostic mammogram. There was a tiny, malignant tumor in one of her breasts.

Also, if you are positive, you need to educate your family members (males, too) and if you provide your genetic test info, they can have a single strand (much less expensive) test done to determine their status. BRCA gene mutation is related to male BC and prostate cancer.

My results will be back in one-two weeks. There is also something called "Lynch Syndrome" - a link between colon cancer and OVCA. A history of polyps on your colonoscopy alerts them to this and they do further genetic testing if you have had 20 or more polyps over your lifetime. I am close, if not already up to 20, and I have only had about 4 colonoscopies. She is sending for the reports to check that out. Oh, joy....more blood work.

minky1225

Thank you for the info...
This was very informative. I am highly concerned for my sister and myself due to the fact that Mom is only 57 with OVCA. She is not sure if anyone else in the family has had breast or ovarian cancer. I only know that Grandma does not. I guess I should bite the bullet and get checked...ARGHHH

msfanciful

minky1225 said:

Thank you for the info...
This was very informative. I am highly concerned for my sister and myself due to the fact that Mom is only 57 with OVCA. She is not sure if anyone else in the family has had breast or ovarian cancer. I only know that Grandma does not. I guess I should bite the bullet and get checked...ARGHHH

Yes,
When I saw the doctor
Yes,

When I saw the doctor Tuesday, they explained to me also the meaning of positive and negative readings of the BRCA testings.

My results were negative for the BRCA 1 & 2 screening, and even though negative is supposed to be a good thing...I don't know quite what to make of that since I still have ovca. But my understanding is that to be positive means one would have a harder time controlling ovca.

Time will tell, time will tell.

Hissy_Fitz

msfanciful said:

Yes,
When I saw the doctor
Yes,

When I saw the doctor Tuesday, they explained to me also the meaning of positive and negative readings of the BRCA testings.

My results were negative for the BRCA 1 & 2 screening, and even though negative is supposed to be a good thing...I don't know quite what to make of that since I still have ovca. But my understanding is that to be positive means one would have a harder time controlling ovca.

Time will tell, time will tell.

Actually....
Studies indicate that BRCA positive ladies have a better shot at long-term remission and better survival rates. I guess that's the booby prize for passing a mutant gene to your progeny.

The bad news is, you have a huge risk of developing Breast Cancer if you test positive because the un-mutated (normal) gene actually helps protect you from BC.

PS....lest you think I have super powers or something, I'm reading from a cheat sheet the genetics counselor gave me - otherwise known as "Hereditary Breast and Ovarian Cancer Syndrome".

Carlene

jamilou

Hissy_Fitz said:

Actually....
Studies indicate that BRCA positive ladies have a better shot at long-term remission and better survival rates. I guess that's the booby prize for passing a mutant gene to your progeny.

The bad news is, you have a huge risk of developing Breast Cancer if you test positive because the un-mutated (normal) gene actually helps protect you from BC.

PS....lest you think I have super powers or something, I'm reading from a cheat sheet the genetics counselor gave me - otherwise known as "Hereditary Breast and Ovarian Cancer Syndrome".

Carlene

Testing and Prophylactic Mastectomy
Carlene
I know how you are feeling right now. One year ago I was in your shoes making the decision to have a complete mastectomy and reconstuction. It is not an easy decision but after 9 years of being cancer free I didn't want to chance waiting to see when bc would strike. If you need more info you can email me and I can give you the name of a group that has a discussion board for women who are brca positive. If you are going to have the surgery or not they can answer a lot of your questions. They have a message board for those that are just monitoring and those that are having the surgeries. Good luck and prayers to you.
Jami

LPack

counselor
My sister and I went to a genetic counselor also as we are both BRAC 2 positive and both counselors did not suggest a double mastectomy. They actually told us since we both had a total hysterectomy our chance of having breast cancer even with mutation is about the same as those without the mutation.

Again, so many different opinions. My daughter lives in Columbus and went to a different genetic counselor (she is also positive) and they did not encourage a mastectomy at this time (she is 34) but did encourage a total hysterectomy as soon as she is 35.

My mother had breast cancer at age 60 (not uncommon) but had a hysterectomy at 30 so no way of knowing if gene was from her (died at age 62 from metastasis to bone). Red light for me was getting OVAC at a younger age like Hissy has said. My insurance paid 100% and now the rest of my relatives can have the site analysis done for much less and so far those that have - the insurance has paid for all of it!

I am just so thankful that my family can find out much sooner than I did and have the options to do preventive surgeries or whatever.

Libby