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brca-1 gene mutation brca-1 gene mutation

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Unread 11-16-2005, 02:19 PM
brca-1 gene mutation

I posted a while back about finding out I was positive for the brca-1 gene mutation for breast & ovarian cancer. I had bi-lateral mastectomy with free tram-flap reconstruction on Sept 7. I will be having my hysterectomy/oopherectomy on Dec 9. All & all things went well with the breast surgery. It was harder than I expected. I have had the most problems with my arms after they removed some lymph nodes on each side. My arms got hypersensitive from armpits to elbows. They are not painful now but I still have numbness & just generally feels weird under there. No one told me my arms would be so affected! Nothing else really hurt just took lots out of me to get my stamina back has been a challenge.

I hope the hysterectomy will be easier! They are doing abdominal since there is a funny looking area of my scar from the tram flap procedure that needs to be fixed up some.

They did find lots of atypical cells in both breasts so I feel I had this done just in the nick of time. I hope they don't find anything when they do the hysterectomy.

Anyone else have propylactic surgery for the breast cancer gene?
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Unread 11-16-2005, 03:06 PM
brca-1 gene mutation

Hi donkeylover

I just wanted to say hi!

and you are certainly a very brave and proactive woman to be going through all of this.

I didn't find the hyst to be too bad...but I don't have the breast surgery to compare it to. I was very sore afterwards, but it was tolerable. Check out the post-op section for other women's experiences.

I know one woman personally who has been through something similar (double mastectomy, then a hysterectomy), she is doing very well, happy and healthy and is now a motivational speaker.

Here is her website:

take care and all the best!
Unread 11-16-2005, 06:43 PM
brca-1 gene mutation

Thanks Shegeek, I will certainly read more post-op stories before my surgery day.
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Unread 11-16-2005, 06:58 PM
brca-1 gene mutation

s donkeylover

My sister had a prohylactic hyst in January this year because of my ovarian ca dx. In March, she found herself facing a reoccurence of breast ca after 6 years. She had a double mastectomy and the new diep flap reconstruction.

The breast surgery was much, much harder on her. The hyst was a "breeze" she said compared to the reconstruction. She had a full vertical incision with the hyst.

Hope this helps....good luck with your hyst. Post when you're up to it and let us know how it went.

Unread 11-16-2005, 07:43 PM
brca-1 gene mutation

I'm waiting on pins and needles to see if I'm BRCA positive. Had testing almost 6 weeks's supposed to take 6 weeks for results. I have no idea what I'll do if I'm positive. The prophalactic mastectomy looks more dauntiing than I realized. Guess I'll cross that bridge when/if I get to it.

Hope your hysterectomy recovery is better. I was prepared for the whole 4 to 6 weeks off work thing, but was back part time by 2 1/2 weeks...of course, I was trying to get stuff done before the onslaught of chemo and keep my mind off cancer.

I had an epidural and virtually no pain, even when they took it out. I hope your surgery goes as smoothly as mine.
Unread 11-16-2005, 07:59 PM
brca-1 gene mutation

Basketnut, I just found out today I had a SIEA flap instead of tram is a website I found that explains it

Twoforone, I think it is much better to get the surgery than have to worry about getting cancer. I never thought I would be positive because I am already older than everyone else in my family that got breast cancer. When I was positive, I didn't want to wait too long for the surgery. You have already been through so much, I doubt you will want to have to worry about breast cancer too. I always think it is better to be proactive than wait for something bad to happen. Prophylactic surgery can't possibly be as bad as surgery to remove cancer!
Unread 11-17-2005, 12:57 AM
brca-1 gene mutation

Originally Posted by donkeylover
Prophylactic surgery can't possibly be as bad as surgery to remove cancer!
That all depends... prophylactic double mastectomy is a pretty tough surgery for some women (your mileage may vary ). I had surgery last year (lumpectomy) to remove very early breast cancer, and it was a (relative) piece of cake. Point being... it is often possible to detect breast cancer very early, and if it's found early, it is very survivable.

In my experience, the hyst wasn't too difficult, but living with the symptoms of surgical menopause can be. However, this was just published recently:

Post-oophorectomy HRT feasible for BRCA mutation carriers
Source: Journal of Clinical Oncology 2005; 23: 7804-10

Does postsurgical HRT influence the breast cancer risk protection conferred by bilateral oophorectomy in BRCA carriers?

BRCA carriers who undergo bilateral oophorectomy to reduce their risk of breast cancer should be reassured that taking HRT does not negate its protective effects, say researchers.......

You need to sign up with to read the whole abstract, but it is free to sign up.

Good luck with your upcoming surgery!
Unread 11-17-2005, 08:08 AM
brca-1 gene mutation

Thanks for the info Surferbabe, I signed up but couldn't find the article.

I guess breast cancer scares depends on the type of breast cancer they find or if you have the gene mutation. In my family's case they had the most aggressive kind of cancer. My sister found a tiny lump, had it out 3 weeks later & it had already doubled in size. She underwent 6 months of chemo plus radiation then constant worry it would return at some point which it did...6 yrs later. That is when she got the bi-lateral mastectomy & also got gene tested to help me & our other sister. We do not know if our mother had ovarian cancer or was 37 yrs ago when she died. The decision of whether or not to get the prophylactic surgery is very personal but they have done the most studies on these genes & cancer & the statistics are so overwhelming that you will get it if you don't do the surgery.
Unread 11-17-2005, 08:17 AM
brca-1 gene mutation

Wow, so glad to find someone else here with the same scenario. I just had a tah and they found cancer in my appendix. Given my family's history, they are doing the brca 1&2 test on me. If I come back positive, the oncologist also recommended a preventative double mastectomy. I, like you, found the odds to be staggering. I read a study where 150 women who tested pos. for the brca1 test had preventative mastectomies and only 2 (less than 2%) got breast cancer (those two still have their ovaries also). Out of 368 women who had tested positive and didn't have the preventative surgery, 49% got breast cancer.

I have been trying to find pics online of women after surgery. I want to know if I'll like the results, even though vanity is hardly a factor here since I am young and have 2 small kids. But my current breasts sag and I'm not happy with them at all. Wondering if I'd lower my risks and also have nice looking breasts too, or if there are some huge scars afterwards even for the preventative mastectomies with implants.

Good luck to you. I'm in TX also.
Unread 11-17-2005, 08:39 AM
brca-1 gene mutation

Starlight7, here is the website for the surgeon that did my sister's reconstruction. <Oops! Link removed per guidelines about physician's information--please share this through our PM system>. She had a mastectomy a year before the reconstruction. I could also email you my own pictures taken 3 weeks post op if you would like. My sister didn't have as much stomach fat to work with as I did <grin> & I turned out larger than I was before the surgery. I think all & all Dr <Oops! Please do not refer to specific doctor's on the public boards.> did a fanstic job on my sister & she had no complications. She had the mastectomy scars & former lumpectomy scar to deal with so she has more scars than I do but he managed to get very symetrical matched breasts formed. I had Dr <oops!> at MD Anderson & he is very very good also. I developed a fluid filled spot on my right breast & it looks sort of sunk in where that was. It has only been 10 weeks so it could get better, takes a long time to settle into the final they tell me. I am thrilled with the tummy tuck bonus! Never have had a flat stomach till now. I will have nipple reconstruction sometime next year after my breasts have finished "settling". I wasn't saggy before but I never going to sag now! The problem with implants is they may have to be replaced in the future where the Siea flap, diep flap etc are forever. Depends on if you are a candidate or not if they can do that type surgery. Having small children is definitely a factor...there is a longer recovery period iwth this than with just have to decide what is best for you.

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