BRCA 2 Positive and Nervous

BRCA2Positive

BRCA 2 Positive and Nervous

BRCA2Positive

My goodness - I have read many sites but have not found many answers to those who tested positive and if they continued to have preventive measures taken such as and ooph or further mascetomies. I have had a left mastec with a crater being left instead of a neat scar because of infection plus my lymnphedema is still bad after 1 year leaving it difficult to use my left arm!

Family history of BC - grandmother died at 41 and mom at 27.

Sounds like I should go for ooph and right mastec - what a decision - need more info please. Hot flashes are awful but dealing with them - if remove ovaries will it just get worse?

Any advice or help would be appreciated. Keep the laughter going!

Hugs & prayers to all,

Moyra

Youwearpink

Hello,

I was in your boat 5 1/2 years ago. I felt helpless.  I am not only BRCA 2 positive, but Brca 1 as well.  Yup, both!  I was diagnosed at age 26 right after I had my second daughter (ten days later). I was very scared. At that point I already had a right mastectomy with tram flap reconstruc. I followed up with an ooph/hyterec a year and a half later.  I am in the process of planning a prophylatic mastec on the left this summer.  I am def. alot less scared now than I was 5 years ago. It does get better with time.  I saw a few doctors about when I should have these procedure. My gyn/onc was persistent about having my ovaries out. My regular onc. told me I had time and do it when I am ready.  She wanted to make sure I was mentally ready.  I can assure you, the fear will fade.  The hot flashed DO get better. They have not fully gone away  Yes, they suck!!!!  I f you have anymore questions, dont hesitate to ask. You can PM me too.

Best wishes and stay cool?  ie hot flashes, lol 

angelaw

Hi: I am BRCAII.  I had dbl mast last July, reconstruction in November and ooph last month.  I figure I am buying my lower risk factor with surgery and am grateful I had the chance to do so.  Heck, a 2-5% risk instead of a 87% risk is worth a few stitches ( I am 54 so the risk was for the next 26 years). I am now working on lowering my heart risk with lifestyle changes.  I have no regrets and feel like I saved my life.  Good luck and as is said so often: each person has to make their own decision based upon their own life and belief system.

Mohrhauser

I am also BRCA2 posotive.I did have a prophylactic masec. and  DIEP which failed and ended up having implants. it was a long journy but i think is well worth it.

smithlme

There's a web site called FORCE  - Facing Our Risk of Cancer Empowered at http://www.facingourrisk.org/ 

Linda

lilith

Hello Moyra.

I am also BRCA2 positive.... and as we speak, I am in the hospital, recovering from the bilat preventive mastectomy. I had a right side mastectomy done last year in July, and I had planned reconstruction with implants. Both for prophilactic and aestetic reasons (better symmetry) I have decided to have the right side taken out and matching implants. I haven't seen the results yet, but from what my doc says and what I feel under the bandages, I am v.v. happy.

I will probably do the ovariectomy in the fall/winter. The doctor says that it isn't pressing, but as at 44 I hold no hope for more babies, I might as well get rid of all risks. I want to have a full and happy life from now on.

bisous3

I am also BRCA 2+ and had a preventative mastectomy and recon - the Alloderm One Step- which was nipple and skin sparing with immediate implant placement ( no expanders) . It was a do-able surgery and not a difficult recovery at all- I am a dance teacher and was teaching class two weeks after surgery. My breasts actually look better than before surgery and I can sleep at night not constantly freaked out that I am going to end up with breast cancer....now if I could only wrap my head around that oophorectomy......

Anonymous

bisous--I have the opposite situation--had the complete hysterectomy (everything removed--not by choice however; ruptured ovarian cysts), but can't seem to think about bilateral mastectomies.  (I am high risk from LCIS and family history, but don't know BRCA status, haven't been tested).

Anne 

smithlme

I've had BC twice and decided to have genetic testing. Since I found out I am BRCA 2+ I am having a full hysterectomy on June 27. I can't keep living in fear that Cancer will take my life...

Linda

annh69

My sister was diagnosed with stage 3 ovarian cancer beginning of last year.  She, I'm happy to say, is in full remission.  All of my siblings got tested.  She came back positive for brca 1 & 2.  I came back brca 2 positive.  I am a 38 year old woman & I'm currently taking tamoxifen.  I'm scared to death of the surgeries.  I know they are only breasts but I have 38 C's & I like them.  All the pictures I've seen of reconstruction have literally scared me to death.  I haven't had children & have always wanted them.  I truly don't know what to do.  The tamoxifen makes me feel so tired.  I feel I can't think straight and I'm forgetful and yes I have had the hot flashes.  I'm the one that's normally cold in 90 degree weather.  I just don't know what to do.  I also take Parlodel for a Pitutary tumor.  As you can probably imagine my hormones are all over the place.  Any words of wisdom would be greatly appreciated.  Thanks & good luck to all!

atg

How did your surgery and recovery go from the surgery?  How are you doing without your hormones?

tweekerbeeker

I am brca2+ and have had both surgeries. I hope that you ladies have a CGC that you have consulted with, and not just onc. or surgical specialists. If you have a teaching hospital near you, they should have specialists whio can direct you through this maze.

Please try www.facingourrisk.org , a special site for those with hereditary cancer. There is a special forum for young women, and a section on your options etc. It has been a lifesaver for me. Please join me there.

lifegoeson

I just got tested for BRCA1 and BRCA2.  I have a very strong family history and I'm also of Ashkenazi Jewish background, which apparently raises the risk of carrying the gene mutation by a lot.  I'm now waiting for the test results. 

I had bilateral mastectomy in March, with reconstruction.

If my BRCA test comes back positive, I will have my ovaries and fallopian tubes out preventively.  I don't think I would have had the BRCA testing done if I would not have acted on the results.  

Daudine

I have no cancer, never did but I chose to have an ovariectomy and a prophylactic bilateral mastectomy last year at 37. I am BRCA1 positive and lost my mother and 2 aunts to BC.

I don't regret having the surgeries. ..it was tough and lots of complications but I am able to say that I have done everything possible to lower my risks.

I think the sooner the better, less time you live with hormones better your chances are. But menopause is hard and it is harder when provoqued like in my case and yours.

 I wish you good luck

Claudine