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Bi-Lateral Mastectomy???

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Marly View Drop Down
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    Posted: Aug 21 2008 at 4:18am
Hi all,
 
I'm just wondering how many of you ladies have had or plan to have mastectomy -- bi-lateral or just the affected breast?  I am considering doing that when I finish my neo-adjuvant treatments, sometime in early November I think.
 
Thanks!
Marly
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Post Options Post Options   Thanks (0) Thanks(0)   Quote QH RDR Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 4:26am
Hey Marly, I had a skin-sparing mastectomy in the affected (right) breast on 7/21/08.  And (post infection and all) I would do it again.  And next year when I am done with chemo and they are replacing the tissue expander with a permanent implant, I am having the left one whacked off (my plastic surgeon literally shudders when I use that term!) just to give me some additional insurance.  I am 52 years old, I don't need them anymore.  I have not yet had genetic testing, but I want to do everything possible to beat this crap!
Sandy
Dx 6/30/08, IDC, node positive, skin-sparing mastectomy 7/21/08, A/C (4 cycles) started 8/29/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marly Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 4:29am
Sandy, thanks for your response.  I am 50 (will be 51 in November) and feel the same way, I don't need these things!  I don't even want reconstruction just to spare myself any additional time in the hospital or worry about something festering under them.  My husband is behind me whatever I want to do.  I also want to ask about genetic testing, just in case.
 
Thanks again!
Marly
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 4:31am
Dear Marly,
 
I wanted to have bilateral done at the time of my initial left mastectomy since I had had thirty years of severe pain in both breasts from the "harmless fibrocystic breast disease"....my surgeon would not do it and a second surgeon said it was not necessary....and yet I am still getting the other one removed since it has the same fibrocystic breast disease that was hiding a breast cancer on the other side.
 
Oh, I do know "they do not grow back". Two surgeons have told me that - of course we (women) did not realize that.
 
I am whacking the other little traitor off too.
 
Best wishes,
 
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marly Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 4:37am
Connie,
 
Thanks, my surgeon told me a lumpectomy would suffice, but I believe she would go along with my wishes.  Any little peace of mind is worth grabbing on to with this disease.  I want to "get them both out of the way" at once and as soon as possible!  Would doing that also eliminate the need for radiation at the end of chemo?
 
Best to you!
Marly
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Post Options Post Options   Thanks (0) Thanks(0)   Quote QH RDR Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 4:42am
Marly, according to my oncologist I do not need radiation because I had a mastectomy, even though I was node positive (2 out of 5).  So I would assume you wouldn't need radiation, but you must check with your oncologist to be sure.  Everyone's situation is different........
Dx 6/30/08, IDC, node positive, skin-sparing mastectomy 7/21/08, A/C (4 cycles) started 8/29/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marly Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 4:53am
I also have at least one node positive deep to my subpectoral muscle, (which I hate the thought that it's escaped a node . . . )  I will check with her on radiation when it's time to make that decision.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 5:07am
Marly,
 
It is entirely your decision as you know I'm sure.  Just give it as much thought and research as you can stand before you make your final decision whatever it may be for peace of mind.
 
I sort of shudder when I read the posts from some who say "I don't need these things" since I am older and that concerns me.  I am older too, that thought was part of my consideration but my main decison for a bilateral was made from having this twice, daughter being diagnosed one month ahead of me the second time and heavy family history.  My surgeon thought lumpectomy would be fine and fought me a bit but gave me the surgery.  Then I tested positive for a mutation, brca 1.
 
So even though I most likely did the right thing for my health I still am having a hard time with the physical side and I was not a breasty woman or into showing anything off but honestly I did not realize how much this has hurt and angered me not to mention my broken heart over my daughter having to go thru the same thing at 39.  She did have reconstruction, I did not.  Even though I am older the adjustment has been very difficult and I hate it and hate it that the disease forced me into this.  It is really conplex to me.
 
Just be sure!
 
Good luck,


Edited by trip2 - Aug 21 2008 at 5:16am
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marly Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 5:26am
Pam, thanks so much for your advice.  I know it's something I have to give a lot of thought to, and I don't want to make a hasty decision or trivialize "getting rid of these things".  I guess I'm so focussed now on being as thorough as possible about getting rid of the cancer that I may be overlooking the long-term physical and emotional effects of mastectomy.  I need to also find out about the BRCA status which would affect my decision.
 
Marly
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 5:41am
Marly, yes read the BRCA information and consider getting tested.
 
Http://www.facingourrisk.org is an excellent place to begin if you haven't already been to their website.
 
This is 'one' of the unfair but sometimes very necessary decisions we women have to make at a very emotional time and somehow I hope this all gets sorted out thru science and research so that women don't have to make alot of the decisions that we do while we are in shock over being diagnosed and what to do to heal ourselves. 
A clear time in our lives for such drastic matters would be so much better but that isnt' always the ways it works right now, unfortunately.
 
I should probably also point out that even though I'm having an emotional battle over my bilat alot of women are content with their decision.
 


Edited by trip2 - Aug 21 2008 at 5:43am
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marly Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 5:50am
Thanks, Pam!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 7:15am
Dear QH RDR
 
Read the meta analysis of radiation after mastectomy.....they found an increased survival of between 5 to 6% in women who had mastectomy and positive nodes.
 
I fought for radiation and ultimately had it done....mine was left-sided - I know all the potential risks but in a qualified institution - there should be no problem.
 
I welcome possible heart disease in twenty years ! I had 3 nodes positive and our center had a radiation for over 4 nodes.
 
The radiation was just another measure of insurance...I cut the breast off, poisoned any other rogue cancer cells with the chemo - and burned the others strong enough to survive the first two.
 
Just my humble opinion.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marly Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 7:57am

Thank you - I will certainly take your experience into consideration!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote KCinFL Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2008 at 2:34pm
Hi Marly, my sister Linda is going to have the bi-lateral matectomy done.  Her decision comes from our strong family history of breast cancer.  We've got a cousin, an aunt and a mother who all had breast cancer.  She is 44 and will have the reconstruction as well.  It is a very tough and personal choice though.  
Inherited BRCA1 mutation 5385INSC from my mom. Sister Linda dx with TNBC 5/23/08. Mom is a 22 year breast cancer survivor.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marly Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 2008 at 3:05am
Hi Sister,
Thanks for the post,  I can certainly understand why Linda would go through the mastectomies in her case.  My maternal grandmother had uterine cancer, my aunt passed away last year from uterine cancer and another aunt was diagnosed with breast cancer a few months ago.  My mom and sister (thank God) have not had any cancers.  I hope all goes well for your sister and your family.
Marly
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sharon in Mich Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 2008 at 7:16am
Dear Marly--I agree with Pam about giving lots of thought to the decision, and you will have lots of time to do this as they drip that nasty, but life-saving chemo into you. I decided to do a bilateral mastectomy with no reconstruction about half way through my chemo for many of the reasons that have you leaning toward it. All my docs supported that decision. I won't say I have no regrets, but i would do it again. One plus to the bilateral is that they don''t take the lymphs out of the unaffected side, as they would have to do if it recurred in the other breast. There is a world of difference in the way my lymph free and lymphed arms feel.

On the radiation question, back in the day when I was being treated (3yrs ago). the docs were quite firm about having it once any lymph involvement was known. I had 28 rounds after the surgery. Their point, which convinced me, was that tn is a trick, tricky disease, and they really wanted to do everything possible to knock it dead the first time around.

Good luck with your chemo. I wish you a complete clinical repsonse.

A funny/weird thing to add. I have been accompanying a friend to her colon cancer chemo over the past few weeks. That's brought back to me a bit of the panic of it all, but also an appreciation of the quality of care and the caringness of the chemo nurses. They are wonderful people.

Sharon
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marly Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 2008 at 7:51am
Dear Sharon,
 
Thank you so much for your response.  I will give it a lot of thought, as you said, I'd like to do everything possible to defeat this nasty disease.  If that means also having radiation, so be it.  Good to know they don't remove the nodes in the unaffected breast.  I have a subpectoral node which is cancerous, but won't know how many until after surgery.
 
I, also, am impressed with the quality of care (people) treating me at Mass. General Hospital.  My life is in their hands.
 
All the best,
Marly
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