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Topic: Ovary Removal

Forum: Positive Genetic Test Results —

BRCA 1 & 2, ATM, CDH1, CHEK2, MRE11A, NBN, p53, PALB2, PTEN, RAD50, RECQL, and RINT1 genes

Posted on: Feb 25, 2012 11:43PM

sonyarose wrote:

Hi there,

I'd appreciate anyone's thoughts...

It's 5 mos since my bilateral mastectomy surgery, and I'm faced with another important decision -- Do I have the ovaries removed only, or have a total hysterectomy...Remove the uterus, too? I've taken Lupron shots to reduce the size of my uterine fibroids. And I hear once you have the ovaries taken out, the fibroids get even smaller. Also, I'm on Femara, instead of Tamoxifen. I'm told by my doctors that it does not increase my chance of uterine cancer.

My doctors say that the ovaries definitely need to come out, as I face a 50% risk of ovarian cancer currently; but they are leaving -- taking out the uterus up to me. It does not appear to be an urgency. What do you think? If you are BRCA positive like me, then what did you do, or plan on doing? When you have the BRCA gene, are you at risk of uterine cancer, too? I'm hearing a lot of mix responses... I'm just confused as what to do.

Thanks so much for your time!

Have a good day,

Sonya Rose Atkinson Dx 1/24/2011, ILC, 2cm, Stage IIA, Grade 3, 1/19 nodes, mets, ER+/PR+, HER2-
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Feb 26, 2012 06:05AM Leah_S wrote:

Sonya, as far as I know the BRCA gene does not increase your chance of getting uterine cancer.

I'm not BRCA+ but I have a family hx of both bc and ovarian ca so my tx recommendations are the same as those of someone who is BRCA+. My onc recommended an ooph but said there was no reason to do a hysterectomy. Your uterus supports other pelvic structures so there can be all kinds of SEs if it's removed. If it's necessary that's one thing but if it's not, why not leave it in?

Fibroids are almost always estrogen-fed so removing your ovaries should cause them to shrink. I had fibroids but they disappeared after I went  through menopause.

Best of luck with your decision.


Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Feb 26, 2012 06:22AM hrf wrote:

I just had the ovaries and tubes removed. Kept the uterus.

BRCA2+ first dx in Oct. 2004 2nd dx Feb. 2009 a new primary
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Feb 26, 2012 08:32AM Miller1353 wrote:

I had a hysterectomy. My oncologist said that I did have an elevated risk of uterine cancer. I had a history of abnormal cervical cells, too, so I had them remove it all. I had it done laproscopically with no complications. I was back at work within two weeks.  To me, it made sense. Best wishes with your decision.

Dx 10/23/2009, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR+, HER2-
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Feb 26, 2012 08:54AM Aussie-Sharon wrote:

Hi I am still recovering from a Hysterectomy...I have a strong family history of Breast Cancer (me included) and ovarian, gene test was inconclusive...had almost 10 years to decide...was just going to have my ovaries and tubes out but after several opinions and seeing the menopause clinic for after BC I have had a LVTH...laproscopic vaginally assisted total hysterectomy...Ovaries, tubes, uterus and cervix...so far so good and I am planning on returning to work tomorrow - flexi hours I hope - office work as NO lifting, bending, squatting, housework, washing...did I say NO housework :)

All the best with your decision the main thing is you are happy and it's the right decision for you:)

Dx 7/4/2002, IDC, 1cm, Stage IIA, Grade 3, 1/11 nodes, ER-/PR-, HER2+
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Feb 27, 2012 05:30AM Karmil710 wrote:

I'm BRCA2(+) and had an Ooph/salp in Nov. 

I just finished T/C X4 and I'm waiting for my visit with my MO to discuss hormonal treatment (eg: Tamox or AI, etc)  

I was under the impression that  I would be doing 5 yrs of Tamox after tx. I was OK w/that, I liked the bone-strengthening aspect of Tamox.   I also liked the fact that  Tamox has been around for a long time, and studies have proven it both safe and effective.  At the end of my last chemo session, my MO casually mentioned that since I'm now post-menopausal, she'd like to use an aromatase inhibitor, instead of Tamoxifen, since Tamoxifen can cause uterine CA. 

I was reading all the SEs  that AIs can bring with them and was very distressed about the osteoporosis. 

I was thinking of having a hysterectomy in the near future to minimize the uterine CA risk from Tamoxifen.   

Does anyone have any advice on this subject? 

BMX 10/18/2011 BRCA2(+) Ooph/Salp 11/30/2011 T/C X4- last one on 2/6. TE Exchange 3/26/2012 Dx 10/6/2011, IDC, 4cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Feb 27, 2012 11:39AM Time4life wrote:


I am BRCA positive/ Triple Neg. No known family history of BC, but my Grandmother had ovarian cancer.

I just had my tubes and ovaries out Feb 9th. It was in and out DCS, 3 little punctures and quick recovery!  I had asked about the uterus as well. I am 44yrs. Chemo-induced menopause. The Gyne Surgeon said that to leave the uterus will not change any risk of uterine cancer. To take it out would actually increase physical complications, create internal scar tissue and require lengthly recovery.  Cervical cancer is caused by an STD, so if prior PAPS are good, then that risk does not change either. So I left it.

Seemed reasonable, and now am glad I went for the smaller less invasive surgery.

Good luck with your decision.

Losing is not an option. Dx 7/2010, IDC, 3cm, Grade 3, 5/9 nodes, ER-/PR-, HER2- Surgery 9/20/2010 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 11/9/2010 Adriamycin (doxorubicin), Taxol (paclitaxel) Radiation Therapy 3/14/2011 Breast, Lymph nodes Surgery 2/8/2012 Prophylactic ovary removal Surgery 4/29/2012 Mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Radiation Therapy 1/5/2014 Chemotherapy 1/5/2014 Carboplatin (Paraplatin)
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Feb 27, 2012 10:00PM Karmil710 wrote:

Thanks for sharing your story, Ladybug. I hope you are doing well after your recent ooph/salp.  My surgery & recovery  were fairly easy too, but the hot-flashes afterwards were/are brutal!

Just curious, are you doing hormonal therapy?  Which kind?


BMX 10/18/2011 BRCA2(+) Ooph/Salp 11/30/2011 T/C X4- last one on 2/6. TE Exchange 3/26/2012 Dx 10/6/2011, IDC, 4cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 4, 2012 11:50AM Ginger48 wrote:

I had BMX on 6/22/11 and ovaries and tubes removed on 12/7/11. The surgery was very easy. Laparoscopic with three small incisions. Pretty quick recovery and not having terrible hot flashes just occasional ones.

I started taking Femara (generic) a little over two months ago and now I am getting joint, muscle and bone pain and not sleeping well. I had a bone density test done as a baseline so we can keep an eye on that.

BRCA2+ Knowledge is power! lumpectomy 4/12/11, NSBMX 6/22/11, exchange to implants 10/27/11, ooph 12/7/11 Dx 4/5/2011, IDC, <1cm, Stage IA, 0/1 nodes, ER+/PR+, HER2-
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Mar 14, 2012 06:43AM learnin wrote:

I think the uterus is optional. But all of the Fallopian tubes need to go. Apologies if you knew that already.

First dx 2005 Stage IIIC then; BRCA2; 2011 mets liver & bone Dx 11/24/2011, IDC, Stage IV, ER+/PR+, HER2-
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May 3, 2012 04:10AM disneyphile wrote:

Considering this too, but really want to keep the uterus for reasons listed above and also for orgasm reasons...(am I allowed to say that?)

My grandmother did die from uterine cancer at age 70, but I've been told its not related to my mom's ovarian/breast cancer and brca1.

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May 3, 2012 11:51AM sonyarose wrote:

Thanks for commenting. I really appreciate it. How is everyone feeling? It's a tough stage to get through for sure. Sometimes, I feel like I've aged 10 years overnight.

I met with a Genetic Counselor who advised me to first recover from my next upcoming surgery (Breast Reconstruction, phase 2). Further, she said to get through the worst of chemically-induced menopause from the Lupron shots (I've already had 4 & my doctors are insisting on at least 2 more, 'cause the fibroids shrink a lot faster)... Then, move slowly into surgery later this year to remove ovaries & tubes. My Genetic Counselor didn't think removing the uterus was necessary. My grandmother had cancer in the uterus, too, but it may have stemmed from the ovaries though; she had breast cancer as well... I'm just on eggshells. I hear though that you can still get ovarian cancer even with your ovaries, tubes, uterus, etc. removed. It's hard to wrap your mind around that... I recently created an artpiece for Lilly Oncology On Canvas to escape from all of this, well, for the moment.

Good luck to all of you strong ladies:) Thanks once again.

Sonya Rose Atkinson Dx 1/24/2011, ILC, 2cm, Stage IIA, Grade 3, 1/19 nodes, mets, ER+/PR+, HER2-
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May 29, 2012 04:54AM starzhere wrote:

I just want to let anyone who doesn't know that even with your ovaries removed you can still develop Primary Peritoneal cancer.  I had BC 23 years, ago and had extensive surgery for PPC IIIC almost two years ago.  Please continue to watch for and take seriously any signs of OC, even if you have your ovaries removed.  Watch for bloating, a sense of feeling heavy,  feeling full after eating less than usual and gastro intestinal symptoms - changes in bowel movements.  I found out I am BRCA 2+.  If you have a gene mutation you are at a higher risk for PPC.


Dx 10/31/1989, IDC, 1cm, Stage I, Grade 3, 0/12 nodes, ER-/PR-
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May 29, 2012 05:45AM Bambaloos wrote:

I had a radical Hysterectomy - ovaries, uterus - the whole nine yards.  My surgery was done by the Da Vinci robot - I have 3 small scars and had no complications after.  I had the radical because I did not want the risk of cervical cancer, it was one less thing for me to worry about.  It was a very personal decision, but I have no regrets. 

Mandy Dx 1/15/2010, IDC, 5cm, Stage IIIA, Grade 2, 6/28 nodes, mets, ER+/PR+, HER2-
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May 30, 2012 02:02AM LNBCA wrote:

Starzhere- were you diagnosed with stage 3 ppc even after surveillance? How are you doing now? PPC really scares me.

My mom's diagnoses': BRCA1+ Dx 12/20/2006, IDC, 1cm, Stage I, Grade 3, ER-/PR-, HER2- Dx 3/27/2012, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Oct 13, 2012 04:36AM lawana_m wrote:

Had my ovaries and tubes removed last week. Having a really hard time. I obviously was really addicted to hormones and kind of a fan of my ovaries. I cry at the drop of a hat, sad about not even having the possibility of having more kids, and then theirs the HOT FLASHES! Has anyone found Effexor to be helpful?

Dx 1/27/2012, IDC, 2cm, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 1/31/2012 Lymph node removal: Left, Sentinel Chemotherapy 2/1/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 6/15/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/2/2012 Reconstruction (left); Reconstruction (right)
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Oct 13, 2012 06:12AM Blessings2011 wrote:

I really feel for younger women who are thrown into surgical menopause! I remember all the side effects that would have driven me bonkers had I not been expecting them!

At least when I started perimenopause (in some women, a ten-year process Surprised) I was older (46) and had many friends going through exactly the same thing.

The following year, I had a laparascopically-assisted vaginal hysterectomy (LAVH) due to huuuuge fibroids and excruciating pain. They said I could keep my ovaries, but my answer was that if I had them removed, that would just be one less cancer I might get.

Ironically, I had been dx'd at the age of 24 with cervical cancer in situ, which was removed with a D&C.

At the age of 60, I was dx'd with BC, and had a BMX. 

(I never had the BRCA test, but Mom had BC, too.)

I sure don't regret any of the choices I've made.

Dx 9/15/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/4/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/21/2012 Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/4/2012 Arimidex (anastrozole) Hormonal Therapy 10/21/2013 Femara (letrozole)
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Nov 27, 2012 12:41AM Tpettis wrote:

I'm looking at the same option as well. Except I'm 31 with no kids my Doc said if there is no family history of ovarian before the age of 35 to leave them in and have kids ASAP then full hysterectomy since I have already had two cervical cancer scares and that runs in the family as well :-(

BRACA1 Dx 11/5/2012, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR-, HER2- Chemotherapy 12/17/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Dec 31, 2012 08:10AM sweetbean wrote:

You know, I just had a second opinion at Dana Farber - I was just reclassified as BRCA 2+ - and they told me that there is a clinical trial going on in Israel about just removing the fallopian tubes, because that is where ovarian cancer usually starts.  So you can remove a big part of the danger without the surgical menopause.  I'm going to try to hang onto my ovaries for a bit longer and would love to know if anyone has heard of this trial or is in it.

Dx 11/18/2010, ILC, 5cm, Stage IIIA, Grade 2, 2/15 nodes, ER+/PR+, HER2+ (FISH)
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Dec 31, 2012 08:35AM Zeeba wrote:

I'm 44, BRCA2+ and I had my ovaries and tubes removed last week. I still have a little swelling, and have had some pretty mild hot flashes, but all in all it really wasn't too bad.  I did hear about the tubes only procedure, but it sounds like there isn't enough research yet...it does sound promising, though. It was a very tough decision, but so far, I'm still ok w/ my choice....Hoping the menopausal symptons continue to be mild.

BRCA2+ Surgery 12/20/2012 Prophylactic ovary removal Surgery 12/10/2013 Lymph node removal: Left Surgery 4/29/2014 Prophylactic mastectomy: Left, Right Surgery 8/26/2014 Reconstruction (left); Reconstruction (right)
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Dec 31, 2012 11:38AM meglove wrote:

I am 41 (42 in two weeks). I had total hys on Dec 3rd 2012. I was not sure if I should keep ovaries before the surgery but I am 95% ER + so no ovaries supposed to be better for me? I have to have the uterus taken because huuge fabroids too. I do not have too much bad feelings so far, just hoping my other organs stay where they are from now on for another 20 years :).

Invasive mucinous + DCIS 3*2.8*2.5cm gr 2, dx 08/07/10 (38 ys), BMX 10/18/10, 0/1, ER+/Pr+, HER2+ DD AC 4 Tx first on Dec 9th then DD Taxol 4 Tx finished on 03/17/11. Herceptin finished in 02/12. Tamoxifen started on 04/15/11. Total hys 12/03/12.
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Jan 4, 2013 12:01AM QuinnCat wrote:

I am brca2+, menopausal, and had a salpingo-oophorectomy on 8/30/12.  This was 3 weeks after chemotherapy, and about 2 weeks after starting Exemestane (generic Aromasin).  My ooph surgeon is also an oncologist.  I asked her about removing the uterus and she said "no."  I didn't pursue much further as others had warned me of the uterus providing some structural support, so I was happy to hear "no."

Fast forward to November and I'm having various problems with the drug Exemestane.  My MO suggests Tamoxifen and I quickly nix that based on the risk of uterine cancer and her immediate reply was "Why didn't you have your uterus taken out?"   Excusing the fact that she could have advised me of this before my ooph surgery and really, is this something I, as a patient would just ask for, she does bring up a good reason for removing the uterus.

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