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bilateral mastectomy

jsco
Posts: 16
Joined: Aug 2002

I was diagnosed july 2002 with a .7 cm tumor, node neg Her/2 -, est/prog +. I had a lumpectomy. the rec from 3 well respected NY docs has been radiation and tamaxofin. I can't stop thinking about getting a bilateral mastectomy. I know its not the norm but I want to do it. I'm afraid of going back into surgery and all that I'll go through. I'd love to hear from anyone who has taken thi path Thanks

24242
Posts: 1417
Joined: Mar 2001

I have to say I understand the way you are thinking totally. I was 36 at time of diagnosis and had a almost 3cm tumor that grew in a week in lymphnodes. I had a lump that went diagnosed as fibrous cyst with no diagnostic testing because of my age and I was tired not ill at the time first lump found. So... I wanted them both off that was it. I felt one at a time wasn't fast enough and thought if I had one at a time I wouldn't go back to have second one done. My mother was a nurse and told me to think of this body of mine. If I had a bilateral I would be putting my body under huge stress and trauma, when it wasn't necessary to do so. My surgeon stated that bilateral was very hard on body that we should deal with the cancer side first and then after all the treatments done then would do the second one if I still felt it was necessary. I waited out the treatments and found I was still getting lumps that the surgeon was now talking like I should leave after cyst #4 I had mastectomy on the other. I never put myself through reconstruction since surgery has also come with side affects with me. I am ok with all that I have and know where I want to be. I think I have done the right thing and had I had both done I would have died due to a raging staff infection that I had. Had I had both done at that time I would likely have died because the infection would of gone directly to heart. I think I did the right thing by giving my body the best chance of recovery that I could minimizing other risks. We all have to do what each of us can be comfortable with. I now know there are other things we should think about.
Be good to yourself,
Tara24242

gayleyr
Posts: 52
Joined: May 2001

I had a bilateral mastectomy with only minor problems. I would recommend it to anyone who has (1) a large tumor (mine was 6x8 cm) and (2) a history of fibrocystic breasts that make mammograms of little use as diagnostic tools. With your tumor so small I agree with your physician's approach with one exception -- why not chemotherapy too?

jsco
Posts: 16
Joined: Aug 2002

thanks for responding. I have consulted with 3 top NY medical oncologist who all rec Radiation and tamoxifan. For my situation they say the benifits of chemotherapy(over tamoxifan) are so small (1%) that it dosn't warrent doing it > In tumors under 1cm it is usually not rec unless there are other unfavorable features. Believe me I had the same question about chemo. I'd love to hear from you again Thanks.

shirlann
Posts: 235
Joined: Oct 2001

Hi, dear, just so you are perfectly clear on the fact that mastectomy is NOT a guarantee of no more cancer. You can have a recurrence in the chest wall, the scar, etc. Dr. Susan Love, in her Breast BOok prefers a lumpectomy (if this is possible) so in case of a recurrence, you have tissue to work with. Now having said that, I sure understand gals with breast full of tiny tumors or micalcifications or lots of lumps getting sick and tired of being scared to death with every mammo. I agree this is a good solution for them. But just so you aware of all the facts. Get Dr. Love's book before you decide. Hugs, Shirlann

jsco
Posts: 16
Joined: Aug 2002

Thanks for your reply. I am fully aware thats mastectomy is not a guarentee against breast cancer. I was afraid that with a mast. and an implant i would be taking a chance in terms of not being able to detect a possible reoccurence. However after asking every doctor this I was told that the small breast tissue that can be left in you is on top of the implant and can be felt and monitored> I'v even talked with my radiologist about getting sonograms. Masectomy does lower your chances of a reoccurance. What i'm strugging with is the difference in reoccurance rates worth the procedure. I went last week to the radiation oncologist. She told me because of the way my rib cage is shapped i'd have a lot 3mm exposuer to my lung. While she said this is not such a big deal It scared the heck out of me. If you have more thoughts i'd love to hear them Thanks

comom
Posts: 46
Joined: Dec 2001

I was diagnosed with DCIS and LCIS in my right breast. after three surgeries, trying to get clean margins, I decided to have a double mastectomy. I flat out did not want to EVER deal with this again. The doc's gave me a 50-70% chance of re-occurance b/c of the LCIS (which can mirror to opposite breast) and because I was so young (37). I have no regrets and more peace of mind. I now have two beautiful silicone breasts that look just fine.
This is a very personal decision. Follow your heart and do what is best for you! No doc is going to try to talk you out of a double if that is what you really want and need to feel safe.
Good luck!
email me if you have any questions
Trina

lillyb
Posts: 8
Joined: Sep 2002

Who were your new york doctors? I am trying to make a decision between lumpectomy and mastectomy. I saw two doctors, one recommended mastectomy and the other told me I had options, but did not express and opinion. You had doctors that expressed opinions. Were they breast surgeons or oncologists?
Lillyb

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