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BRCA1 Mutation BRCA1 Mutation

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Unread 09-15-2010, 06:48 PM
BRCA1 Mutation

Hi girls,
I am 1 week Post LAVH and BSO for testing BRCA1 positive. I am 51 years old and my Pathololgy did come back negative for cancer, thank God! I was interested in speaking with anyone out there that has had the Preventative Mastectomies. There is no history of breast cancer in my family, but my mother died of Ovarian Cancer when she was 38 yrs. old. I did not get tested sooner for one reason, I was afraid, as I am a Hospice RN and see the worst of the worst every day. Now, I only wish that I had been tested sooner. If you are at risk, get tested! the decision to have the Hysterectomy was easy in comparision to deciding on the Mastectomy.

Any input would be appreciated
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Unread 09-17-2010, 10:30 PM
Re: BRCA1 Mutation

Hi there, and

I am BRCA 1 postive and I have known for 8 years, 3 yrs. ago I had a LAVH/BSO as a prentive measure. When I talked to my oncologist, he said he would like for me to get a preventative mastectomy, but since I go in every 6 months for tests, he felt I would be OK not doing it because if I were too get breast cancer it would be found very early, if I ever get cancer off they go. The LAVH/BSO also reduced the risk of breast cancer.

Good luck on your recovery ... take it easy !!!

Unread 09-17-2010, 11:17 PM
Re: BRCA1 Mutation

Thanks Barri I learned my lesson on taking it easy yesterday, My husband took me to the store, after 10 minutes in the store, I hurt all over. Today, I feel like I did two days after surgery, with a pain to my left abdominal area with vaginal pressure! I guess it is true what they say, nurses make bad patients
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Unread 10-10-2010, 09:40 PM
Re: BRCA1 Mutation

Aloha e Barrie,

Wow, am I glad I read your post! I am the opposite treatment plan from you and maybe we can share!

I had preventive bilateral mastectomies in 1987 (I was 34) and this was WAY before anyone heard of doing this "radical" surgery! My oncological surgeon was a genius and I remain indebted to him every day of my life. I have NEVER, NEVER regretted my decision!!! I have a depressing and overwhelming family history (3 generations) of breast cancer and it's now in my generation (2/4 maternal cousins and 2/3 paternal cousins!!!).

Preventive hysterectomy/oopherectomy was not even a recoimmendation when I had my mastectomies! Now I've been evaluated as having 8/9 "high risk" factors for breast or breast related cancer. So...more body parts scheduled to be gone preventively in November.

Could we share stories? I'm really looking to learn about others who have had hyster. preventively.

With warm aloha,

Unread 11-12-2010, 01:09 PM
Re: BRCA1 Mutation

I'm BRCA 2. Had the TAH but opted to keep my breasts with every 6 months having either an MRI or mammo. My cousin who also has the gene (and 2 sisters who had breast cancer and the gene) opted to have her breasts removed. She had it done in New Orleans. The surgeon is phenomenol, as well as the facility. I would go there if I decided to do it..and insurance let me.
Unread 11-13-2010, 04:52 PM
Re: BRCA1 Mutation

I'm BRCA2 Positive. I had both preventive surgeries. Bilateral masectomies and LSC Hysterectomy. I don't regret it for a single second. My sister has stage 3 breast cancer and if she were giving the chance, she would have done the same thing I did. We had no family history until she got cancer and was tested for the gene. I'm a pre-vivor and enjoying every second of my life. I'm not going to sugar coat it, it was painful and I'm still having pain but in the end, so worth it. I had the expanders and now have the implants. Opted not to do the nipples or tatooting as I've had enough pain and really, who needs them!!! I never have to wear a bra again ever if I don't want to!! Everyone is different, some do it to feel whole again. I have a very loving husband who loves me no matter what. I actually think they look pretty darn good, even without the nipples. I no longer have the stress of worrying about the results of the MRI or Mammo. My sisters, stage 3, never even showed up on the Mammo. Hers was so aggressive and grew so fast, it was a "no brainer" on my part. My younger sister will be doing the same next year. No regrets for a single second!!! IF you could prevent something so horrible, why wouldn't you? Something to think about!!!
Unread 11-20-2010, 12:14 AM
Re: BRCA1 Mutation

I have just recently decided to do the preventative mastectomies. I am a Hospice RN and have seen the worst of breast cancer with my patients. I am in California and have <insurance company name removed per TOS> pays for this 100 %, I guess they figure it is less expensive than paying for cancer treatment . My first step is to see a Plastic Surgeon. Preventative surgery can be done with what is called a nipple sparing skin sparing technique and immediate implants. Do not get me wrong ladies, I am really frightened to do this!
Unread 01-10-2011, 11:00 AM
Re: BRCA1 Mutation

I was dx w/ BRCA1 TN breast cancer at age 28. I've had my mastectomy. It wasn't preventative, except for the cancer-free breast (right). I've also had an ooph & hyst (separate surgeries due to BAD luck) to prevent ovarian cancer. Anyway, I did nipple/skin sparing mastectomy with implant (expanders at the moment) reconstruction. The expanders still feel weird (almost a year after my surgery), but according to my plastic surgeon, that's 'normal'.

If you have excess width in your abdomen they can also give you a 'tummy-tuck' with your reconstruction (DIEP or TRAM). That way you don't have 'devices' instead of breasts. You will have your own tissue that will fluctuate with your weight changes. I highly recommend doing a search for Facing Our Risk of Cancer Empowered (FORCE) for more opinions, support (we're all some type of hereditary breast cancer people), and research.

Good luck & prayers!

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