Brca Gene and reconstruction info please.

Etnies15

Hello everyone.

In 2012 my 50 year old Mother died of breast cancer after a horrendous 8 month fight. I was 23 at the time and she was 6th female member of my family to have had or died of cancer. I knew that I would have to visit my GP and go down the road of gene testing but I decided at that time that 23 was too young to seriously consider chopping bits off my body and that I would wait until I was 30. I turned 29 this year and have an appointment tomorrow with my GP to discuss my options and put myself forward for the testing. I have googled some information on what to expect throughout the stages and if my results are worst case scenario, what I could be facing. Unfortunately I find that it's all a bit clinical and too far removed for reality for me. All these procedures I read about still haven't given me a clear understanding of everything I may need to consider. What I would like, if possible, is for women who have had actual experience in the Brca gene testing, elective surgery, and reconstruction to share with me their real life experiences, however painful they may be. Thank you all in advance.

A very worried nearly 30 year old xxxxxx

farmerlucy

FWIW my DILs gma and mom had the brca1 mutation. DIL tested about five years ago. No mutation. End of the line for that bugger. Thankfully, too, since they have three little girls. I hope you get the same result Etnies.

LisaAlissa

Hi Etnies15,

I've been through genetic counselling and testing, but (at least so far) don't need surgery, etc.

I strongly suggest you see a genetic counselor both before and after testing. Exploring your family's medical history will help the counselor sort out which genetic tests are appropriate, as well as help you with interpreting the not-always-clear results. As well as deciding what to do with the results.

You'll find a lot of support here, but you may also want to check out the website for Facing Our Risk of Cancer, Empowered ("FORCE").

www.facingourrisk.com

which has some local groups, but also a very helpful website/forum.

HTH,

LisaAlissa

Lula73

so I didn't test positive for BRCA however I had radiation therapy when I was 13 for a different cancer that put me in high risk category for breast cancer down the road (80% risk for bc). Inquired years ago to try and get prophylactic MX to head this off at the pass. Back then it just wasn't done and I was turned down. In the meantime many advancements have been made in the reconstruction world. Then in January this year the diagnosis of bc in right breast was made, bilateral skin and nipple sparing MX was my choice with immediate natural tissue reconstruction (called DIEP flap). If I could've done it sooner I would have as I wouldn't have to do any other treatment protocols like I do now. I'm happy with my reconstruction results-they look just like before surgery for the most part. They move with me just like my natural breasts did. Buying bras is not a problem. The next thing was to decide on having ovaries removed due to the genetic test results. Moving forward with that in a couple weeks. And if I'd had the option of MX before diagnosis I wouldn't have to have my uterus removed too due to the tamoxifen therapy.

So I guess bottom line in my opinion is a prophylactic MX with reconstruction is a better option than waiting for the diagnosis to have the MX as the diagnosis comes comes with so much more than the surgery. Hope this helps! Feel free to pm me with questions.

Emily2008

I'm BRCA 2 positive, which I found out after my first breast cancer diagnosis. I elected to have a prophylactic mastectomy on the other, non-cancerous side. I also had a total hysterectomy and oophorectomy as recommended to prevent ovarian cancer. As it turns out, I had a recurrence of the cancer on the same side as the original, despite the mastectomy, chemo, and 6.5 years of hormone therapy. So far, no evidence of cancer in the "good" breast which I had prophylactically removed. The cancer breast has a TRAM flap reconstruction, while the good breast has an implant. I had the recons done at different times because I didn't know about my BRCA status at the time of my first diagnosis and surgery. Had I known, I would have done both with implants, most likely.

I would strongly advise you to see a genetic counselor pre and post gene testing to get a clear understanding of your personal risk factors. I went to a major cancer teaching and research hospital in my area for the counseling, and was very glad to have things so clearly explained to me. I'm also in a FORCE support group locally. Most of the women in the group haven't had cancer but have found out they are BRCA positive for one of the mutations. They're in a variety of places, with some already deciding on surgical options, some opting for surveillance right now, some freezing their eggs so they can have their ovaries removed, etc.

Feel free to ask me other questions I haven't addressed here. Good luck!

Silverpullet

I had genetic testing done last year after prompting from my family. I had a previous doctor draw blood years ago (almost 10 years)and said I didn't have the gene and last year found out that was a lie. (That doctor that lied ( an OBGYN no longer practices). I saw an oncplogist to get the testing done last year ( I have 8 members of my mothers family that have or had cancer). I tested positive for BRCA2 mutation. Oncologist urged me to have a total hysterectomy ( I am 44 now) and a double mastectomy. Said it should reduce my chances of cancer by about 90%. I had all the elective surgery done last October with nipple sparing procedure and breast expanders put in for reconstruction. 2 weeks later, the biopsy results detected ductal carcinoma in Situ in my right nipple area so went back in for nipple removals. Put my reconstruction behind by about 4 weeks as I had to have the expanders unfilled to heal. I finally had completed reconstruction February 6th with silicone implants. If I would not have done the testing I would be telling a different story today