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-   -   Mastectomies after lumpectomy? (http://her2support.org/vbulletin/showthread.php?t=19703)

michele u 03-13-2005 09:39 PM

Has anyone had this experience? I had 2 lumpectomies when i was dx. My Dr. told me the stats were the same for stage 3 breast cancer whether we did mastectomy or lumpectomy. Now that i'm 18 months out, which i never dreamed would happen, i'm considering doing biltateral mastectomies. what is everone's opinion? The gals that had mastectomies at first did you do reconstruction right away, with expanders in? Our what did they do for you? A PET scan showed some activity in the right breast that was affected. They said don't worry about it because it showed up on the ct scan part not the pet scan part. But, i'm still worrying alittle what they were seeing in there.

al from canada 03-16-2005 09:28 AM

Do you have any mets?

AlaskaAngel 03-16-2005 12:14 PM

I had a left lumpectomy as a Stage 1. For whatever might be going through my head (even just hot air), basically I have no aversion to getting a bilateral mastectomy even though what I have looks fine. I actually don't like the idea of the breasts eventually being mostly just excess baggage.... not to mention a possible source of a repeat episode of this disease.


linda 03-16-2005 03:29 PM

sorry, I first responded to your other post and called you Marilyn!

Oh well, brain fog I guess.

I had two lumpdectomies four years ago and had implants just over a year ago. I'm from Canada and a woman i know though another site is getting the expanders after her mastectomy. If you're interested in her progress you can read about it at www.canadaba.ca under breast reconstruction. It's relatively a new site for reconstruction but we're starting to get a few women on board.

As I'm brand new to this site, I'm sure ther're other woman who can hopefully help you out.

I here trying to find up to date info on her2/neu as my tumour was 100% positive.

good luck hun

michele u 03-16-2005 05:39 PM

No , not that i know of as yet! Michele

michele u 03-16-2005 05:41 PM

Why did you need reconstruction after a lumpectomy? My breast after lumpectomy gave itself a instant reconstruction when i got some swelling/

al from canada 03-18-2005 03:39 PM

Hi Michele,
The reason I asked if you have mets is because generally, once there are mets, you are officially stage 4, and mastectomies are no longer considered as the cancer is now systemic. I do question why are you are considering a prophylactic bilateral mastectomy. Have you tested positive for the BRCA1 or BRCA2 genes? If you haven't, my reservation would be the activation of HER2 from the surgical trauma of the mastectomies. There seems to be a fair amount of evidence that HER2 can be activated in this way and result in cancer spread. I know some on the board would disagree with me but.....
Good luck in your decision.

michele u 03-19-2005 10:38 PM

Al, I never thought about that! I guess i'm just getting scared because my Herceptin was finished a couple of weeks ago. It's the letting go thing i guess which is hard. I would rather keep them but i don't want to look back and wish i did. It's a hard decision.

al from canada 03-20-2005 02:08 PM

Hi Michele,
Why don't you request herceptin "off-label" for another year. There are suppliments that down-grade HER2, specifically oleic acid (from olive and flax oils) which I would be taking. It's a tough decision but I would consider researching if there is any evidence that would support having a prophylactic bilateral mastectomy as a anti-cancer in any cases like yours. We know that there was no clinical benefit to having a mastectomy in the first place soooo, why have things changed?
Life after breast cancer is something we really don't deal with on this Board, but I know there are books out there on the subject.
Good Luck,

michele u 03-21-2005 06:20 PM

Thanks for your advice. Your right about now, why is it different. I think it's just the worry about not doing anything. I do take a flax seed oil that has omega,2,6,and 9:(which is oleic acid). I want to try to get into the vaccine trial. I think i should be concentrating on that. I don't know why now that i'm worrying about mast.

al from canada 03-21-2005 07:52 PM

I agree with you 100%. Move forward and concentrate on getting into the vaccine trial or something like it. It is very hard to stay focused in times of stress but radical doesn't always mean better. I think that Joe posted a link a while back which indicated about a dozen vaccine trials in the US.
Take care and stay strong!!

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