Has anyone ever had genetic testing done?

[PanFan01]

Here is my situation. In 2002 at the age of 31 I was diagnosed with breast cancer and underwent a mastectomy to my right breast and had three months of chemotherapy. In 2005 I had a propholactic mastectomy done to my left breast. Even after all of that back in December I had learned that my breast cancer was back. Scans revealed a mass in my left lung, an enlarged lymphnode, cancer in the fluid surrounding my heart and cancer is various bones. Obviously this a very agressive cancer considering it came back even though I had no breast tissue and it came back on the other side of my body. I am still going through chemo right now.

I have only one sibling, a younger sister, and two young boys (ages 12 & 10). I have been told that the genetic testing would be good to do to see if and what type of cancer gene I carry. Knowing this info will be helpful to my boys and their future health. If I test positive for a breast cancer gene it means my sister has a 50% chance of carrying it meaning she will have an 80% chance of developing breast cancer before the age of 60.

I guess my question is for those of you who have had the testing and found out that you carried a cancer gene. Do you feel you become too over protective of your family and their health because you may have passed on this gene to them? Do you worry with every stuffy nose and cough that your kids come down with that it could be something worse? I guess I wonder about this because the second time I got sick with cancer my doctor just thought I had asthma. He treated me for asthma for eight months. After consulting a pulmonary specialist he found out that the constant wheezing was from the tumor in my lung, not asthma. I am going to have the testing done, I just hope it doesn't turn me into the biggest worry wart in the world.

Thanks for your thoughts in advance.

 

[Pea-n-Me]

I am sorry for all you're going through. I am a BC survivior, too. (We have a survivor's thread here if you're interested in coming by.)

I've had the testing done. The main purpose for testing in my case was that if I was found to be positive, I'd have my ovaries out since BRAC positive women have a higher risk of developing ovarian cancer as well as breast cancer. I had genetic counseling beforehand, and based on that alone, ie going back 3 generations of medical histories on both sides of my family, they suspected it would be negative, but to be sure, we went ahead, and it was. It doesn't mean I don't worry, though. The females in my family (especially first degree relatives) know they need to be proactive and I want my daughter to start her testing early. I have a good friend whose mother died of invasive BC and instead of testing (which has insurance connotations, etc), she has yearly MRIs instead. Just a thought for your family.

Obviously this a very agressive cancer considering it came back even though I had no breast tissue and it came back on the other side of my body.

The hard part about invasive breast cancer is that it does its damage before it's even found, ie traveling throughout the body via the lymph system and depositing some cells in places they don't belong. I was devastated when they explained to me that the type of surgery I chose wouldn't affect my long term survival, because my initial thought was to remove both breasts and call it a day. Heck, I had children to raise. But unfortunately, as you've found out, it's not that simple. I wish it was.

ETA I saw this when I was looking for something else. Maybe it'll be helpful. http://www.mgh.harvard.edu/about/pressrelease.aspx?id=1132

 

[snappy]

Here is the link to our breast cancer survivor thread. We have more than one than has done the testing.

http://www.disboards.com/showthread.php?p=36281336#post36281336

My sister is considering genetic testing since my mother and I are both survivors and she has already had multiple biopsies.

 

[cm8]

 

[quasar4legs]

No experience to share but just wanted to send my support.

Best wishes for the future, I shall send you a little pixie dust

 

[kdzgon]

I lost my sister to aggressive breast cancer a few years ago, and have a daughter that had cervical cancer, so testing would probably be a good idea. My sister refused to have the testing done so we never found out if she carried the gene. My other sister and I have discussed getting the testing, especially as our family has twelve daughters (and six sons), plus ten grandkids so far. Unfortunately, insurance being what it is nowadays I am reluctant to get the testing. Considering the additional fact that there is little in the way of specific preventative treatment, I am relatively comfortable with the decision - at least for now.

 

[cbg1027]

My mom has ovarian cancer. She had the genetic testing done on herself to see if she carries the BRAC gene. She does not, so my sister and I did not get tested.

Personally, I didn't see the point in doing it. When a immediate family member has cancer, you know you're at a higher risk for developing it yourself, whether or not anyone carries the BRAC gene. Why worry yourself or any others more by knowing it's 'extra prevalent' in your family?

Besides, you can't control the way your sister lives her life. Once your children are adults, you cannot supervise their lives every minute either. Knowing that you have cancer should be more than enough to convince them to minimize their own risks in every way they can.

Cancer is depressing enough. No need to add another possible thing to worry about.

Best of luck to you.

 

[Julie*]

My husband was tested for the BRCA gene and it was negative.

Basically he is one of 6 and 3 of his 4 sisters have had breast cancer, fallopian cancer, and ovarian cancer before the age of 50 in the past 4 years. His mother also has had breast cancer twice. All are survivors and are currently in remission.
One of the sisters chose to be tested (she was the first to find out she was + for BRCA1) and then 5 of the 6 siblings have now been tested- all are positive except my DH.
They chose testing just to have the information- it also helped the one sister had had early stage BC decide to have a double mastectomy and oopherectomy as preventative measures. Because she was +, her insurance did not balk at either procedure.

The sister who has stage IIIC ovarian cancer (remission right now) was told by her oncologist at Brigham and Women's that survivorship is higher for women who are positive for BRCA. They are more likely to get cancer but also more likely to survive it.

My husband chose to have the testing down for 2 reasons: he wanted to know for our children's sake and our family doctor told him if he were positive he would want to have certain screenings younger than the age of 50.

Best of luck to you in your decision and with your continued treatments.

 

[bushdianee]

I was diagnosed with ovarian cancer at the age of 21 almost 31 years ago. One of my sisters was diagnosed 4 years ago at the age of 43. We have 2 more sisters and 4 brothers. About 2 years ago a third sister's doctor wanted us to get genetic testing done. They were convinced that we would test + for BRAC but the 2 of us who had the ovarian cancer didn't so they didn't test the others. They said they are sure that there is a genetic link but it hasn't been found yet. The 3rd sister's doctor told her to finish her family soon as he wants to take her ovaries soon. She just had her baby 4 months ago and had her ultrasoound where some calicifation(sp?) showed that wasn't there a year ago so she is going to have surgery by the end of the year.

 

[kbheap]

My mother was recently diagnosed with breast cancer and she did test positive to the BRCA test as well as one of her sisters who had breast cancer 10 years ago. This week my sister and I chose to be tested as well and are pending our results. We are not looking forward to watching what our mother is about to go through and if we test positive, we are both opting for preventative double mastectomies with implants.

To answer your question though, my mother has not had an emotional breakdown yet about her cancer situation. However, when she got her positive test results back, she did have her breakdown about that. She is way more protective and worried about my sister and myself than her. There is nothing she can do at this point but fight her cancer. She does see a way for us to try to prevent it though and she never wants us to have to go through the treatments. So yes, she is way more protective of us. She has also been encouraging all of her other sisters and brothers to be tested as well. So far 2 others have already been tested and are pending results.

 

[HaleyB]

Please get tested and if you test positive please encourage anyone who might also carry the gene to be tested. Knowledge is power. Early detection makes a world of difference. And you will worry either way.