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Oophorectomy vs. hysterectomy

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lawana901 View Drop Down
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    Posted: Apr 17 2012 at 9:36pm

BRCA 1+ and will need ovaries removed soon.  Wanted to know what others did regarding just having ovaries removed vs. hysterctomy.  Seen gyno oncologist today and he seemed to favor total hysterectomy.  Also, when did most people have theirs done.  I am doing neoadjuvant chemo now and would really like to have my ovaries removed when I have my bilateral mastectomy but my breast surgeon doesn't recommend it.  She suggested I do it with my exchange surgery.  It makes me nervous the longer they stay in there.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2012 at 9:38pm
I had only my ovaries out, but I did that because my 1st BC dx was ER+.  I did that 2 years or so after my 1st dx.   I wish I had gone ahead and had a full hysterectomy, my gyn even suggested it, and i thought why take something out if I didn't need to.. but I didn't change my mind in time to have her take everything... 
 
not sure that helps you..
 
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2012 at 9:49pm
I would have two separate surgeries. I know that there was a gal on this forum who had one surgery for bi-mast, complete hysterectomy and reconstruction ..she was under the knife for nine hours. I really don't know how she did it.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2012 at 12:37am
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2012 at 12:55am
BSO vs. total hysterectomy is a complicated and very difficult decision.  Different doctors provide different advice.  I ended up with an onc/gyn who very strongly recommended totaly hysterectomy, but my aunt, sister, and cousin's doctors only recommended ovaries and tubes removed and did not even mention removing the uterus.  I did a lot of my own research.  I agonized and went back and forth and back and forth and finally decided not to have my uterus removed.  Have you checked out facingourrisk.org?  It's a website dedicated to hereditary breast and ovarian cancer.  There is a really informative paper on the site explaining the different points of view and why some docs advocate removing the uterus and why some think it is unnecessary.  There are also many discussions on the discussion boards with women sharing their experiences and decision process on this difficult issue.  You'll learn a lot. 
 
Are you pre-menopause or post?  If you are pre-menopause, it would be a hard decision whether to do both surgeries together.  Women have different experiences with surgical menopause.  It wasn't too bad for me, but for some women it is tough.  But I can understand the desire to stop worrying about ovarian cancer.  My personal experience probably isn't much help to you.  I thought I was cancer free when I found out my BRCA status (a lump showed up on an MRI but my oncologist said it was just a lymph node).  I scheduled separate surgeries for BSO and BMX, four months apart, because my onc/gyn said it could be tough to deal with surgical menopause and breast removal simultaneously.  Three weeks after my BSO I felt the lump that was supposedly a lymph node, got scared, went to a different oncologist, and got my TNBC diagnosis.
 
I know this is so hard--all these decisions.  My heart goes out to you and my thoughts are with you.  This site and the facingourrisk site are great resources for information, sharing, and when you need some TLC.  Take care.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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ann u View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ann u Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2012 at 9:49am
I learned of my BRCA1+ status after I finished chemo -  my gyno/onco recommended ooph/hysterecctomy because he said the fallopian tubes run into the uterus, so with just an ooph, you are leaving a small section of fallopian tube in place.
 
As far as doing the surgery together, I don't think I would.  My BMX was a doosey - I would say it was my toughest surgery of the six that I have had - not very painful, just a lot to deal with with drains, etc.  Plus, it's hard to coordinate a breast surgeon and a plastic surgeon, let alone adding a gyno/onco to the loop.
 
My oophy/hyst was actually an "easy" surgery - I had the daVinci robotic surgery - I would highly recommend it.  I was in the hospital overnight.  As far as hot flashes, mine were worse with the chemo induced menopause, although 5 1/2 years later, I still have them - not as bad (or maybe I am just getting used to them as being part of my everyday life)
 
Ann
8/06: IDC 1cm, 0/9 lymph nodes, lumpectomy, Mammosite radiation, 4 x A/C
5/07: BRCA1+ (5382insC)
11/09: IDC 3mm, double mastectomy w/reconstruction

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Post Options Post Options   Thanks (0) Thanks(0)   Quote nmunoz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2012 at 12:07pm
I am also BRCA1+ but I still have not had my ooph yet (I'm 35 now so I will probably have it by the time I'm 40 and sooner rather than later). But, I went to see one of the most knowledgeable doctors in BRCA and ovarian cancer who works at MSKCC in NY and he told me that for purposes of the mutation the ooph would be enough. Doctor's don't like taking out more than needed it seems.

My local GYN oncologist who is also really good has told me the same thing but when I asked him about the hysterectomy he said he didnít think it was necessary but he would do it if it made me feel better. In my case I want to do it because my aunt who also had breast cancer in her thirties ended up dying over 20 years after her BC from endometrial cancer that was diagnosed at a late stage. Even though she was never tested we are pretty sure she had the mutation as my father (her brother) has it and although in my research I have not seen a lot of correlation between endometrial cancer and BRCA1 I donít want to take any chances. I guess this is one of those things were it is really up to you and what you can or canít live with. As Katdoll said it is a good idea to look in the FORCE website as they have plenty of info for BRCA mutation carriers.

Good luck!

Best,

Natalia.
Natalia, 38 years

Dx TNBC 10/22/08, BRCA1+

Double Mx 11/20/08 with Recon.

3/37 nodes

Rads 7 weeks done 8/09

ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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mindy555 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2012 at 2:41am
I agree.. it's SO worthwhile to check out the FORCE website.  I'm another BRCA1+ with the same sister & brother mutation as Kat & Steve.

It's a difficult, individual decision.  If you feel you have enough information to go with what feels right for you, then follow your good judgment.  If not, seek more expert oncology GYN opinions until you're satisfied.  

It was offered and I chose not to deal with the oophorectomy at time of bilateral mastectomy.  My gut said to wait.  I wanted options and more opinions.   I'm glad I did.  I'm now facing a total hysterectomy w/BSO.  However, I'm older, postmenopausal... again, a very individual choice.

Best Wishes!!
Mindy 

Edited by mindy555 - Apr 22 2012 at 3:20am
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Cbeta View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cbeta Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2012 at 7:10am
I am another BRACA1+ and have had BMX and profilactic oophorectomy 18 mo. ago at the same time. I am glad I did that because pathalogist  found very early stage in fimbria (end of fallopian tubes). no one test did show any sign of cancer, but surgery was confirming that.  
Diag IDC TNBC 9/2010 BRACA1+ 2,5 tumor LNneg 4AC 4T
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