Advice for breast reconstruction BRCA2 positive

For those with a High Risk of Breast Cancer -BRCA1 and BRCA2 Genes, Family History, LCIS
suzanneM
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Re: How was your surgery and recovery?

Postby suzanneM » Wed Oct 31, 2018 10:02 am

Hi Mel,

I see your post was from May, so I was wondering how you went with the mastectomy surgery & how your recovery has been?

I have been diagnosed with breast cancer on the one side but I'm considering prophylactic surgery on the other breast, so a bilateral mastectomy (I'm 48 years old). I recently had the gene testing done too, but it'll be a 2 month wait for those results. With your surgery, did you have to have the expanders first? If so, have you changed over to the implants yet? I would really like immediate reconstruction but I know it's not always an option..

I'd love to hear from you.

Thanks!

Suzanne :)

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Re: Advice for breast reconstruction BRCA2 positive

Postby Nicochick » Thu May 17, 2018 12:38 am

Hi Mel,
I had a preventative double as well. The mastectomy is worse pain wise compared to the swap to implants. Expansion process feels like a whole lot of pressure but if you take a panadol before this should help. Recovery wise, I was in hospital for about a week both surgeries. You will have drains to make sure there isn’t a build up of fluid. I was off work for about a month with the mastectomy and back to work after a fortnight after my swap over surgery from expanders to implants.
Good luck with it all x remember everything improves with time and take each day as it comes
26 y o BRCA1 mutation, bilateral prophylactic mastectomy, expanders and silicon implants.

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Janette
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Re: Advice for breast reconstruction BRCA2 positive

Postby Janette » Tue May 15, 2018 5:25 pm

Hi Mel,
I have bilateral implants. My plastic surgeon tol me he has patients who have had the same implants for 20 years and while there is a risk of lymphoma it is rare.

Do discuss all the options with your surgeon including all the pros and cons.

I'm sorry you're faced with this, but knowledge is power. :hugs:
Janette

Dx LCIS Dec 1997, Dx IDC, DCIS, bilateral LCIS Oct 2005 er+pr+her2-
Bilateral Mastectomies, expanders and silicone implants

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jezza
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Re: Advice for breast reconstruction BRCA2 positive

Postby jezza » Mon May 14, 2018 5:56 pm

Hi Mel

I had a mastectomy because of breast cancer with immediate tissue expander. Six months later I had a prophylactic mastectomy on the other breast with expander put in. I was pretty small too, so opted to go larger. Gotta be some plusses in all this! This was 22years ago and amazingly I still have my original implants and have had no problems (saline). So many stories and different outcome. Good luck with your research. xx

Jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: Advice for breast reconstruction BRCA2 positive

Postby StephO » Mon May 14, 2018 1:27 pm

Hi Mel

I’m 30, found out early March I had breast cancer. I’m a BRCA1 gene carrier and found out I had that gene 3 years ago after my Mum had breast cancer.

I have undergone a double mastectomy with immediate tissue expanders. I also had my nipples removed and will be reconstructing them.
The worst part was trying to get comfortable and the drai tubes are very annoying, plus a had a couple of complications. However, after those, I recovered well. I am almost 5 weeks post surgery and hopefully returning to work tonight.
Aesthetically, I am happy with the outcome so far, even though I prefer my old breasts. The only issue I have is the stretch marks around my breasts but I’m hoping they improve with each expansion.

Sorry to hear of you and your Mum being gene carriers xx
Steph

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Re: Advice for breast reconstruction BRCA2 positive

Postby ruth1 » Sun May 13, 2018 7:55 pm

Hi Mel, sorry to hear you have to make such a bug decision at such a young age but you are right as prevention is the thing to go for. If you are thinking of implants please talk to your surgeon about the risks of Anaplastic Large Cell lymphoma which is a cancer caused by the inflammatory process initiated by textured implants being used a lot these days. Many surgeons are saying is very rare but it is increasing. If you can talk about getting a Diep reconstruction but you do need body fat for that. I had a bilat mastectomy 5 years ago with immediate implants and exchanged for textured after problems with capsular contracture now I have to go back to smooth because I am showing signs of the inflammatory reaction that could lead to ALCL. I don't have enough fat for any other recon so I'm stuck with implants. Having said this - there are women with implants who have no issue at all but they do have to be replaced every 10 years anyway. With recovery - its very individual - after mastectomy with implants I took a month to get back on my feet.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

Mel-J
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Advice for breast reconstruction BRCA2 positive

Postby Mel-J » Sun May 13, 2018 7:39 pm

Hi,

I am 29 years old and have just recently found out I have a mutation in my BRCA2 gene.

My mum was diagnosed at the age of 42 with breast cancer and had a mastectomy. In September 2017, after an ultrasound discovered a lump in each of my breasts, I had a core biopsy on both which came back as fibroadenomas (one complex, the other simple). I then spoke to my mum who agreed to have a genetic test and she came back with a mutation of the BRCA2 gene, and subsequently I also found out I had the same mutation.

I have had two children and am very content with having no more. I have an appointment this week with my breast surgeon to discuss my options, but I am very certain on having a double mastectomy with reconstruction.

I was wondering if anyone had experience with an immediate reconstruction or expanders and what your experience was like, including recovery time. I am petite and due to breast feeding my children, am close to being flat chested :)

Thanks in advance for any help. I want to take the preventative route so I can live a long and healthy life for my beautiful kids.

Thanks, Mel


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