BRCA1 + and Unable to decide

• By Lindaje
• Posted October 3, 2009 at 1:27 pm
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Yes, I also had that decision to make, although slightly different. I had already had breast cancer ( 17 yrs ago ) and had a right mastectomy. After testing positive for BRCA2, I had a total hysterectomy. That was an easy decision since my family was complete and I didn't want a future with OVCA. To have another mastectomy was a difficult decision. However after thninking about it long and hard, I opted for the second mastectomy. Had the second part of 3 part reconstruction surgery 2 weeks ago. At this point I just want it all to be over. I chose this in hoping that I won't have to face cancer and chemo in the future. And, Yes I do know that I am not 100% out of the woods for future cancer, but have cut the odds way down. Good luck and I hope this helps.

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• By Lindaje
• Posted October 3, 2009 at 1:29 pm
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One more thing....read the posts on the SEX topic. When you remove the ovaries the estrogen goes too.

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• By Plonanon
• Posted October 3, 2009 at 1:46 pm
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There is a web site, www.facingourrisk.org, for women with BRCA mutations. While I was considering being tested, I spent a lot of time there. It is a fantastic site, with enormous amounts of information and great women (and a few men). You will get a zillion answers if you post your query there, and it is worth following a lot of the threads that discuss various aspects of the problems faced by those who are BRCA+.

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• By jasco999
• Posted October 3, 2009 at 4:05 pm
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My wife of 32 years discovered she was BRCA1 positive and our genetic counselor advised a bilateral Salpingo-oophorectomy and consideration of bilateral mastectomy. We elected to do the bilateral Salpingo-oophorectomy with a supracervical hysterectomy. We had that surgery performed laparoscopically robotic assisted (DaVinci Robot) and upon the return of the pathology report microscopic cancer was discovered on the outside of all the organs (graded 3C) removed which caused us to have a full cancer surgery for optimal debulking and IP port placement. We decided to rely on quarterly breast monitoring that includes breast MRI, annual breast mammography and ultrasound, and quarterly breast exam by a breast surgeon, rather than remove her breasts at this time (perhaps to revisit this decision after she is 60-years old.)
She underwent 5 months of IP and IV chemotherapy with cisplatinum and Paclitaxel and she is now 11 months after chemo and her CA125 has declined from a high of 32 to 5.
The chemo was very manageable with the drugs that are available for anti nausea.

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• By gatornp
• Posted October 3, 2009 at 5:09 pm
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I too am BRCA1 positive but found out after I was diagnosed with stage 3C Ovarian Cancer June '08. I kinda suspected this when my older sister passed away after an 18month battle with ovca at age 41 but I was too busy with work and family issues and I figured screening ultrsounds and CA125 every 6 mos was good enough to catch anything early. To my surprise, my ovca was diagnosed just 6 weeks after I had a CT scan with NED after radiation treatment for Non-Hodgkins Lymphoma. I am now going through my 2nd round of chemo, doing well now but I really wished I had gone through a prophylactic hysterectomy/oophorectomy. I am having mammogram/ultrasounds alternating with MRIs to screen for breast ca and my Oncologist also put me on Arimidex for prevention. I am probably going to have the bilat mastectomy after my chemo is done next month and I get a little stronger. Please consider prophylactic surgery, chemo is not a great alternative. Good luck with whatever decision you make, it's not an easy one.

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• By lifeisgrand
• Posted October 3, 2009 at 5:35 pm
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It is interesting the strides they are making in ovarian cancer research because of the number of prophalactic oophorectomies being done. They are finding a 4 year window of opportunity when these tumors are very small until when they start growing. If you are past your child bearing age I would seriously be having the surgery. Better to be safe than sorry... this is a monster of a disease that you don't want to have to battle. Just read through some posts and you will get a taste of how difficult the struggle is. You really don't want to be in these shoes.

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• By PositiveJude
• Posted October 3, 2009 at 9:32 pm
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Thank you all for all your answers. I am still uncertain, but all the info helps.

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• By verlinda
• Posted October 4, 2009 at 9:06 am
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Positive Jude,

If you have the ovaries removed, your lifetime risk for breast cancer drops from 87% to 50%. Not great, but a whole lot better, if that helps in the decision. I've had ovca, but unlike most women, I've decided to keep my breasts as long as possible. Some women sail through double mastectomies. Others don't. Most doctors tend to downplay that side. My gyn/onc's wife had breast cancer, and he totally supported the extra vigilance route. (He would have supported the double mastectomy, too.)

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• By FavoriteAunt
• Posted October 4, 2009 at 9:28 am
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This is a very personal decision. If it were me, I'd have the oomphrectomy. I personally would not do the mastectomy as a precaution, but I would be extra vigilant with checkups. There are no guarantees for anything even it you did it, and my feeling is I'll deal with whatever comes up if and when it happens. Again, this is a very personal decision and I hope you find the right answers in your heart.

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• By 99to1
• Posted October 4, 2009 at 9:40 am
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There is a great doc on the PBS program POV "In the Family" that might help you with your decision. You can watch it for free online
http://video.pbs.org/video/1227242582/program/1154485580

It's a big decision. But with 2 kids, I'd go for safe over sorry. (but I already went through OC so it's easier for me to say)
The more informed you are the easier it will be...so keep asking.

You might also want to check out the HysterSisters website. I think they have a specific forum for BRCA diagnosis.

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