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Old 03-13-2005, 09:39 PM   #1
michele u
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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.
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Old 03-16-2005, 09:28 AM   #2
al from canada
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Michele,
Do you have any mets?
Al
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Old 03-16-2005, 12:14 PM   #3
AlaskaAngel
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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.

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Old 03-16-2005, 03:29 PM   #4
linda
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Michele,
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
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Old 03-16-2005, 05:39 PM   #5
michele u
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Al,
No , not that i know of as yet! Michele
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Old 03-16-2005, 05:41 PM   #6
michele u
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Linda,
Why did you need reconstruction after a lumpectomy? My breast after lumpectomy gave itself a instant reconstruction when i got some swelling/
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Old 03-18-2005, 03:39 PM   #7
al from canada
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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.
Al
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Old 03-19-2005, 10:38 PM   #8
michele u
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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.
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Old 03-20-2005, 02:08 PM   #9
al from canada
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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,
Al
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Old 03-21-2005, 06:20 PM   #10
michele u
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Al,
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.
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Old 03-21-2005, 07:52 PM   #11
al from canada
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Michele,
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!!
Al
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