Brca2 positive

I tested Brca2+ prior to the surgery, and this was the reason why I chose bilateral mastectomy. The doctors did not push for it (I consulted in 3 places) but supported my choice.

I'm also BRCA2 positive and just found out 4 weeks ago. I don't know why, with your family cancer history, they didn't do a BRCA test right away. You certainly seem to fit the criteria. I pushed for my BRCA test but I assume they would have suggested it anyway. My father had prostate cancer, his sister had breast cancer, and his father had pancreatic cancer.

Maybe they knew they needed to get the tumors out and get you on chemo ASAP and prophylactic surgeries could wait, just a guess.

I was scheduled for a lumpectomy but had to change to uni-mastectomy after finding a second tumor a few days later. Found out the night before my unilateral mastectomy that I was BRCA2 positive. It was too late to change from uni to bilateral mastectomy and keep the surgery date, I could've pushed my surgery date out but my doc was going on vacation the day after my surgery so I chose to get the unilateral so I could get the tumor out ASAP before it spread if it hadn't already and then get a second mastectomy prophylactically later. I knew I was getting a reconstruction later anyway.

I'm also getting my ovaries and fallopian tubes removed. Trying to decide if I should also get my uterus (hysterectomy) removed since the gyn onco surgeon said there wasn't any proof that BRCA2 increases uterine cancer, just ovarian cancer. She suggested hysterectomy along with ovaries and tubes just because, why not since she would already be doing surgery but I know the recovery is longer with the hysterectomy. So can't decide. Need to research more as it was a bit confusing.

But now my oncotype DX test came back high-40, so all my surgeries have to wait for chemo.

In a way, I am glad that I only got the unilateral because I am healing faster and will be ready for chemo sooner which I think is probably the most important thing (but scares me more than surgery). The mastectomy on the other side and the ovary/fallopian tube removal are all prophylactic so I guess it's ok they are being done after chemo. Also its giving me time to say goodby to my existing boob, weird I know, but I found out I had breast cancer and less than three weeks later had my unilateral mastectomy so I wasn't ready for a bilateral mastectomy and it sure has been nice to have one side that doesn't hurt for sleeping. I'm not saying it was right for them to wait so long to do your BRCA test but maybe it helped you get chemo sooner, idk.

I'm getting a prophylactic salpingo-oophorectomy due to BRCA2+ after I finish my chemo (starting next week for 3 months). I'm 51 but still pre-menopausal. The surgeon also wants me to get a hysterectomy but I see no evidence I should get my uterus removed too. My doc said no hormone replacement due to BRCA2 and ER+ cancer. My biggest worries are the same as yours. Did your doctor say you should get hysterectomy too? I don't know since I haven't been on Tamoxifen yet nor menopause, but I would think having ovaries removed would be a little bit similar to Tamoxifen since they both lower estrogen. Hope someone chimes in who has had an oophorectomy.

I has a non cancerous mass that turned into a papilloma very quickly and grew. Them I had a lumpectomy. It was suggested to have the test and I am Brca 2 positive. I now have a mass on the other breast that after 6 months will be Sono. I feel the same... Why after.. Cosideting this mutation can't suppress tumors I wish I would have known. I now struggle with what to do.. It seems a ovarian removal is a must. I am 50. Both mom and grand mom had breast cancer...with a hose of other maternal women in my famil

I am now 50. I have a high concentration of breast cancer (mom, grand mom), pancreati(paternal grandmom) and ovarian cancer mom side cousin and a host of maternal relatives... I do not have cancer. I had a lumpectomy in June and tested Brca 2 positive last month. The removed tumor started as a mass then a tumor grew pretty quickly in 6 mths.. I have another developing that's being monitored. I am now in the decision process to have everything removed or continue monitoring for threats. I could really use some feedback.

Thank you for the link

Hello coby59, and Welcome to the bco community

I have a similar history, which is listed in my profile.

In my BRCA2 journey, I've had 4 professionals give me advice. My primary GYN and my Breast Surgeon were both strongly in the "You have BRCA2 mutation; just take everything out" camp. My Genetic Counselor and my Gynecological Oncologist were more scientific: "BRCA2 is NOT associated with increased risk of uterine cancer. You do not need a hysterectomy. Don't have unnecessary surgery." When I told the Gynecological Oncologist about the advice of my primary GYN and BS, he said, "Well, it's summer and as much as I'd love a new car with a convertible roof, I'm not going to make you pay for it. You don't need a hysterectomy."

Of all of those professionals, the Gynecological Oncologist would know the most about the risks of Gynecological cancers. I followed his advice and just had my ovaries and Fallopian tubes removed. He reminded me that uterine cancer's warning signs include vaginal bleeding, which is easy enough to detect. Screening for cervical cancer includes your regular Pap smears.

My advice to you is to have just your ovaries and Fallopian tubes removed to reduce your risk of ovarian cancer. This is called a BSO = Bilateral Salpingo-Oophorectomy. Removing just ovaries and Fallopian tubes is a much easier surgery on your body, and can be done laparoscopically. You do not need to have your uterus or cervix removed. There is no medical justification to "just take it all out," which is what many people may try to push on you. Laparoscopic surgery is very easy. You can have same day surgery. Be sure to have a Gynecological Oncologist perform this part of the surgery. They are trained in removing the ovaries and Fallopian tubes, and flushing the peritoneal cavity to catch any stray cells, which is all part of the prevention.

On to your breasts: BRCA2 women have a 60 to 87% risk of breast cancer. A bilateral mastectomy to reduce your risk of breast cancer down about 4%, which is even lower than the 12% for the general population all women. Since my mother had two cancers already (DCIS at age 62 and ILC stage IIIA(+?) at age 79),  I considered my personal risk for breast cancer was very high. Did I want to have high screening and possible preventative medication, and hope for the best? Did I want to have surgery now before a cancer diagnosis? I decided to have preventative surgery. Be sure to have a Breast Surgeon perform this part of the surgery.

Yes, the prophylactic mastectomy will be heavy surgery. You will get through it. You can choose whether or not to have reconstruction, either now, later, or never. If you want reconstruction, be sure to have a Plastic Surgeon perform this part of the surgery.

I had my mastectomy with tissue expanders on 11/11/15, and my exchange to implants on 1/18/16. It was major surgery, but I'm doing great now. I have peace of mind. I also had my BSO at the same time, that is, all three parts were done as one surgery. The surgical coordinators for the three surgeons (Gynecological Oncologist, Breast Surgeon, and Plastic Surgeon) worked together to schedule this. All three doctors are part of the same hospital system in my area.

My questions for you: do you have just a general surgeon, or have you consulted a Breast Specialist and a Gynecological Oncology specialist? Why is your surgery scheduled so far in the future?

All my best wishes for you. Please ask any questions. I've done a lot of research on this.

Mominator

Hello RAS0817, and Welcome to the bco community.

Good for you, getting all your surgeries done at the same time. That is what I did, and it worked out well for me.

I don't know anyone over in Pennsylvania. Your Breast Surgeon, Dr. Sataloff, probably is your best resource, having worked together with many plastic surgeons on previous mastectomies and reconstructions. Dr. Sataloff may pref some PSs over others.

Best wishes on your surgery and recovery.

Mominator

I wish I had some good advice. My kids are 13 and 11 and I don't have a clue how I am going to tell them. Can't even imagine. I'm still in denial about the 50/50 chance my kids have it. The stress of waiting for the test was so awful, can't imagine when it's waiting for the results for your child. Sometimes I just want to secretly test my kids so I can get it over with. Sorry, I am no help at all--just doom and gloom. Let me know how it goes. We have a Starting chemo in September support group under chemo that has lots of good info, if you are interested. There's probably one for October too. Nobody in my group is BRCA positive though

Eemax, your story is similar to mine. I was 42 when they found suspicious calcifications in my mammogram that turned out to be stage 1 breast cancer. My mom died of a rare lung cancer at 49 and I had a third cousin who had breast cancer at 35. Unfortunately, I was unaware that she was brca2 until it was too late so I was never tested until after my BMX. After the shock of having the mutation, I felt like i had the power of knowledge on my hands and had a full hysterectomy (cervix, ovaries, uterus, tubes) and thankfully, no sign of cancer! My gyn/oncologist was very aggressive and did exactly what I asked although there is no correlation with cervix and uterine cancer with brca2. I just didn't want to worry about it since I was done with having kids. I had already had a BMX as soon as I found out I had breast cancer. My breast surgeon said I was a great candidate for a lumpectomy since my cancer was so small but I pushed for the BMX. Thank god I did. They found dcis in both breasts that was never detected in my mammogram. Since then, I have met with dermatologists,a pancreatic specialist and genetic counselors to review my risk for other cancers and the proper screening I need being BRCA2. I totally agree with you are that you are the greatest advocate for you health!

Hi Capecodgirl!

I'm also BRCA 2 positive and was tested in 2010. This was after my cousin got stage 3 ovarian cancer. Her late mother and my late mother both died of breast cancer many years. I did get the BSO in 2010 at age 47. I was still pre-menopausal and had completed my family. I had a quick recovery and no second thoughts about this at all - my cousin's experience really scared me.

My MD urged me to get get a PMX, but I declined, and have been pretty vigilant about mammograms and MRIs.

I hate the MRIs, but I don't dwell on breast cancer. I've been comfortable with this until now. I just got dx with DCIS and am thinking about a BMX. My husband is really worried that I will predecease him and very much wants me to to do this.

What I do know is that every decision path is deeply individual and that we look at options through the lens of our family experience.

How are you doing with your decisions?

Capecodgirl, I had stage 1 breast cancer at age 42 after my routine mammogram and found out I was brca2 a few months later. My second cousin had stage 3 bc at 38 and thankfully is a 7 year survivor. Breast cancer or ovarian cancer does not run in my family but other cancers do like lung and esophagus cancer. I had a double mastectomy immediately after finding the 6mm tumor. This is before my results came back. My young age and the fact that I have three young kids made that decision. Three months later, I had a full hysterectomy. My gynecological oncologist scared me with the fact that there is no exact medical screening for ovarian cancer and that my chances were so high, especially because I am a breast cancer survivor. She even warned me that they could find an occult cancer in my fallopian tubes (which ovarian cancer usually starts) and that brca2 patients need a special biopsy performed during the operation to find cancer cells. Yes, she terrified me. I elected to have everything taken out (cervix, uterus etc.) because my other cousin had uterine cancer and I did not know if that runs in my family too. My surgery was a success and no cancer was found! The recovery was longer then just getting my ovaries out but after 6 months, I feel close to normal. I do not regret my decision. It gave me peace and control that I did not have when I was diagnosed with bc. If I would have known I was brca2 positive years ago, I would have had everything done to avoid the bc diagnosis. My mom died of lung cancer at a young age and cancer has always lurked in the back of my head. The power of knowledge of your risk is on your side. If you do decide to have the surgery, it is doable and your body will find its new normal. Please PM me if you have any questions or need advice.

Hi Barbara. I'm glad to hear you went through with the surgery. It is a hard decision but a wise one. Hopefully, it will just be a bump in the road in this journey of life. Take care!

Star2017- I was offered the prophylactic mastectomy or every 6 months screening (alternating MRI and diagnostic mammogram). Doctors told me if I get a recurrence they would be able to treat it again. I chose the screening. I did not have chemo though, so don’t know how that would influence my decision.

I do worry about a recurrence - don’t we all. I also wonder if the chances of recurrence or potentially a new primary are greater for us because of the Brca2. I hope I made the right choice

Good luck with making your decision.