Bi-lateral prof mast?

I am in the same situation as you, 38 years old, no cancer but BRCA-1 positive. My mother died from a second breast cancer at 64, first one at 51. My aunt died at 42 of breast cancer another one at 38 from lung cancer, an uncle at 51 from colon cancer.

I had my ovaries removed last March and I had bilateral mastectomy with reconctruction last May though I have no cancer. My chances were too high (90% breast cancer and 65% ovarian cancer). I don't regret anything though it was a hard road to take.

Daudine -

 I was wondering which model you used to determine the risks. I have used the Gail, expanded Gail and others and have come up with a range of 28% on the NCI one to greater than 85% for the detailed one for breast cancer. Neither one takes into account the apocrine metaplasia which is apparently pre-cancer based on the latest research. Also, my doctor is concerned about my ovaries due to enlargement, cysts etc. Any advice?

Also, Vickie - 

have you done these risk assessments? I was thinking about the same thing. I have had several biopsies, just finished a lumpectomy which is apparently not what they call it when it turns out benign but still has taken a big chunk out including under the nipple so I'm already what I jokingly call "mangled" (what can you do but joke??) and I have two more on the other side which are growing and haven't been evaluated. When do you stop chopping and just take the damn things away? And I continue to have changes that seem to be leaning towards developing cancer and too much density to make any determinations with tests. Please let me know anything that you find out which may be helpful to me and I'll do the same for you.

Debbi, www.breastreconstruction.org has a page with questions to ask your PS. I don't know if you have checked out that site. It has a wealth of information on breast reconstruction.

Sheila

Taralee:

I had recon on a rads and lumpectomy boob and it worked out fine!!! I did have complications, but they were able to fix them.  My best advice is to shop PSs reccomended by your breast surgeon, who are experienced in rads boobs recon.

If you need to PM, I can give you my details, if it will help you.

Good luck!  Yes, it can most certainly be done (it is not an easy road tho).  Just be stubborn

Tabby, I feel exactly the same way.  In fact, I am having my oopharectomy/hysterectomy this wednesday, and I will be following up with a prophy sometime this year.  I too dont' want to wait til cancer finds me.  And I was in a gown, wating for my MRI this year when I said "enough! nothing is worth this constant fear!"  I almost feel it's worse that the initial diagnosis.  To live in fear, not what I want.

Yes, you can save your skin, possibly the nipple as well.  I too hope someone comes on to weight in on this choice.

Best of luck to you also,,, you are NOT selfish my dear, you are prudent and sensible and pro active.

xox

Tabby,

 I found out in Nov. 08 that I had LCIS. I know I couldn't deal with the stress of tests and meds. and going to the Dr. every 6 months.So I had a bil mast. with implants not expanders on 1/9/09.

 It's now been 8 weeks and I feel great. I had skin sparring not nipple sparring. My BS said that since LCIS is in the lobs. and that goes to the ducts and the last place is the nipples. Why take a chance that you might get something later on in the nipples. My PS said same thing and if there's not a good blood supply they die. No thanks I'll have the PS add some later.

I was so stressed out about this whole thing and now I have such peace of mind. I sleep at night which I wasn't doing before the surgery. I started to work again after 6 weeks.

I had really no pain. Just tightness and soreness. but no pain. What a surprise. The worst part was the drains and I had 4. I had a little pain from where the drains came out of the skin.

I wish you all the best and if you need to talk please send me a private message

Take care

Ann

Hello All,

     I had my Bi-Lat on 2/24 and to be honest, it wasn't as bad as I had thought it would be, Yes I am sore and yes I feel pressure but, it is so doable.  Went to see the PS on 3/5 and got all 3 of my drains out plus he did my first fill of 50 cc each, wasn't expecting any  of that especially so soon therefore I hadn't taken a tylenol let alone a pain pill and I didn't find it a horrible thing to endure matter of fact it was over before I knew it. I asked about doing reconstruction while doing Rads and his answer was as long as they weren't radiating the breast he could continue with my fills which I mam being told they will radiate the clavicle area only for precautionary purposes, so I guess all is well or as well as can be, also I didnt have to have both breast taken but, chose to as not to have to relive this possibly in 2-5 years as I have seen happen to others I know.  Hope each and everyone is well and If there are any other questions I can ask my doctors let me know cause I go see my BS Monday and will gladly ask any you might have as luckily she is also my friend.

Chat at You nall soon and Thanks for all your encouraging words You Gals are the Greatest,

Deb 

Hi ladies,

I had a R skin sparing mast on 12/17 and decided to have a prop L after chemo for the same reason as most of you on here, scared of waiting for the other shoe to drop. I have made plans with my BS to do it next month because my last chemo is 3/24 and she said she could do it after 3 weeks post chemo. I have an appt with a PS next week, what I want to do is a skin sparing with immd implants, large B currently a lopsided DD with pros on R. When I had my original mast back in Dec I was under the impression that skin sparing was a good idea for better cosmetic results when it comes time for recon, I recently read that it is useless if it is not immd, has anyone else had delayed reconstruction after a skin sparing with implants instead of expanders and how were the results. Good luck to all those fighting for the right for an prop mast, my understanding is that when it comes to ins they have to go with the patients choose once you have a dx of BC, I have Atnea and that is what was explained to me by the education nurse at the time of my initial diagnosis.

Kyra and Tara - I suggest that you start a new thread under Breast Reconstruction called "Rads and Reconstruction" or something like that. I did not have rads, so I can't help you. But my PS did tell me (when I asked about a friend that wanted to see her), that there are a lot of options for reconstruction post rads. I just don't know what they are. Best wishes.

Vickie - Here's hoping the year and a half go by and you get back to the states and can do what you feel is the right thing for you. I am sorry you have to wait. Hopefully your aunt's genetic testing comes back soon. Take care. - Jean

I agree with Laura. Of course you can have reconstruction on previously radiated area !!! Some PS will try with an expander, like Laura says, I have just completed rads with implants (Had one step alloderm). IF the rads cause the implant to fail, I will have DIEP (tummy fat, no muscle) or GAP (butt fat, no muscle. See the Center for Restorative Breast Surgery for before and after pics.

Spring.