BRCA gene

ohilly · April 2008

I just went thru a mastectomy in February (I have invasive intraductal, did not spread to the lymph nodes with a 1.1.cm tumor). I am currently going thru chemo, but just today found out that I have the BRCA 1 gene. I am so depressed that I have this gene: I listened to what my doctors said - which was that it does not affect my survivability as long as I go forward with my plan to have a prophylactic mastectomy as soon as my chemo is over - but I am just depressed anyway. I was just starting to have a more positive attitude and now I feel like for sure I am going to die. I also read on the internet that BRCA 1 carries a worse prognosis than BRCA 2, but then the doctor (head of a genetics program at a major teaching hospital in Chicago) told me this is not true and that my survival is the same as any other bc patient. Can anyone else tell me something positive about having the gene. I am really down. Ohilly

Cindy54 · April 2008

ohilly..I had two aunts with breast cancer as well as my Mom with ovarian. That means there was a pretty good chance I would end up with one of those and I did. I asked the doctor about gene testing. He said that all it does is confirm that you carry a gene in your body that could/maybe one day turn into cancer. It does not mean it IS cancer.I am still waiting on my insurance to approve testing for this. If they do I will be tested. If they don't approve it, I won't be. You are in the beginning stages of fighting your cancer. You have taken steps to deal with it. That does not mean it is a death sentence. My doctor said that even if I tested postive for one of the genes, it did not mean I had to take drastic action. They would monitor me for any changes, either breast changes or the Ca125 test for ovarian. If anything out of the ordinary showed up, then we would take action. It is NOT meant to be a death sentence. It is mainly a means to test for this because of family concerns. You are not going to die from having this. Yes, it is scary and serious. But DO NOT believe everything you read on the internet. Ask your doctor to be more specific.Ask some of the nurses. Maybe some of the ladies here can offer more.Just because you have this gene does not mean that you have to automatically remove your breast or have your ovaries removed. It is up to the individual.And their doctor. Please don't panic. Ask more questions of your doctor. Cindy

KathiM · April 2008

I have a girlfriend who is both BRCA1 and BRCA2 positive (tumor in one breast was positive for 1, tumor in other breast, 2). She is VERY much alive and kicking...and really enjoying life. She had lumpectomies, which I think is a bit risky, but who am I to judge?

You don't have a choice as to what your body is made up of, just the choice as to how to react to these things...you are reacting soooo strongly, and should be very proud of yourself!!!

Someone said to me the other day, during a chat about just this subject, "We inherit our eye/hair color, and many other things, how can this not come, too?"

I know it's hard....I am genetically predisposed for colon cancer....but be proud of yourself for the strength you are showing in the face of this beast!

Hugs, Kathi

seof · April 2008

I agree that having the gene is not necessarily a death sentence for you or your family members. It is just one more bit of information. Talk to your Doctors about it, look at reputable sites (ask nurses for some good ones, or try M.D. Anderson, or other well-known research facilities, or ACS). My Sister died of BC, did not have the either type of gene. I got BC, got tested, I am also negative. The info I got said being positive does not reduce chances of survival (based on known statistics), but if you and family members have the gene, it is among the factors that might increase the risk (like having a family member with BC,obesity, sun exposure, high-fat diet....) Had I been positive, I would have gotten my daughters tested, and would have suggested that my Mom and other sister get tested, but Dr. said since we were both neg, it is not likely that any other female relatives would be pos.

I think you should file the information away in the "good to know for future reference" file, and procede with your Doctor's recommendations with the assumption that you are going to live as well as you can for as long as you can, and move forward.

Take care of yourself. seof

cabbott · May 2008

seof said:
I agree that having the gene is not necessarily a death sentence for you or your family members. It is just one more bit of information. Talk to your Doctors about it, look at reputable sites (ask nurses for some good ones, or try M.D. Anderson, or other well-known research facilities, or ACS). My Sister died of BC, did not have the either type of gene. I got BC, got tested, I am also negative. The info I got said being positive does not reduce chances of survival (based on known statistics), but if you and family members have the gene, it is among the factors that might increase the risk (like having a family member with BC,obesity, sun exposure, high-fat diet....) Had I been positive, I would have gotten my daughters tested, and would have suggested that my Mom and other sister get tested, but Dr. said since we were both neg, it is not likely that any other female relatives would be pos.

I think you should file the information away in the "good to know for future reference" file, and procede with your Doctor's recommendations with the assumption that you are going to live as well as you can for as long as you can, and move forward.

Take care of yourself. seof

Never forget: knowledge is power. Knowledge about your particular cancer is power against cancer. If you know you are BRCA1, you can read up on recommendations that have shown to increase survival and reduce reoccurance in fellow survivors with the same kind of genetic makeup. Only about 10% of breast cancer survivors can do that. The rest of us (me included) don't know what resulted in us having cancer or what in particular we can do to change our prognosis. Cancer is always genetic. Some of it is caused by a gene doctors recognize like yours. Some is cause by an individual mistake. Many more may be caused by a gene combination that doctors don't recognize yet. And some are the result of other things that changed the genes for the worse. You know what you have. That is power.

mgm42 · May 2008

Sounds to me like you have received some wonderful advice and some great insights. I hope that everything the others have said has penetrated your fear and empowered you to deal with those test results and your upcoming decisions. Hugs, Marilynn

hward2007 · May 2008

I just finished my bilateral masctomy three weeks ago and im getting ready to start 4 rounds of Taxol. My mom had a lumpectomy eight years ago and we are both BRCA1 positive, from what I understand they will just keep a closer eye on me and my daughter who is 15mths will be tested when she is 18yrs old. It increase you risk of developing bc and overian cancer but it doesn't mean you will. And you already have bc so you have beating the gene. I agree with what everyone else says at least we know and can prevernt reoccurance.
Heather

BRCA gene

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