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All TopicsForum: BRCA1 or BRCA2 Positive → Topic: Side Effects from Oophorectomy After Menopause

Topic: Side Effects from Oophorectomy After Menopause

Forum: BRCA1 or BRCA2 Positive — Connect with others who have either a BRAC1 or BRAC2 breast cancer gene abnormality

Posted on: Jan 10, 2011 03:19PM, edited Jan 10, 2011 03:23PM by chinadollmom

chinadollmom wrote:

I'm researching getting an oophorectomy, since it was recommended by both my radiologist and gynecological oncologist.

I'm leaning toward it, because ovarian cancer scares me even more than BC. But some of the side effects I've read about are scary. I'm hoping that being peri/post-menopausal and on tamoxifen, that the side effects won't be much worse that what I'm already experiencing. (I'm 50. I thought I was post-menopausal, but my onc found enough estrogen in my bloodstream that he has put me on tamoxifen for 2 years. He plans to switch me to arimidex after that.)

Has anyone else had an oophorectomy after menopause, or near my age? If so, I would love to hear your experiences.

One other question: The gyn onc thought I should also consider having a hysterectomy while I'm getting the oophorectomy. I'm leaning against that -- I don't see that I'm at a much greater risk of getting uterine cancer, which fairly easily detected anyway. Any thoughts on that?

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Jan 10, 2011 03:35PM Latte wrote:

hi chinadollmom, are you brca positive? i'm not aware of ooph being recommended except in these cases. if they just want to shut down your ovaries, they can do it medically.

i don't have anything to offer about post-meno SEs - i am premeno and am having an ooph next month (I am BRCA1+). about the hysterectomy, my onc recommended leaving it (as long as all presurgery tests and US show that it looks OK). the chance of uterine cancer is slightly raised because of tamoxifen, but my onc didn't think it was significant enough to warrant removing my uterus, and also there are other problems (structural...) that can occur if you remove it. hope this helps.

30 Dec 2012: It's back! Stage IV, bone mets to spine, hip, femur, rads, Zometa, Letrozole. May 2013: further spread to ribs, skull, iliac, plus suspicious spots in lung and liver. Clinical trial with taxol and carbo plus velaparib/placebo.

Dx 5/3/2010, IDC, 2cm, Stage IIIc, 1/2 nodes, ER+/PR+, HER2-Dx 12/30/2012, IDC, Stage IV, mets, ER+/PR-, HER2-Chemotherapy 06/04/2010 Adriamycin, Cytoxan, TaxolSurgery 10/28/2010 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Radiation Therapy 12/12/2010 ExternalSurgery 03/16/2011 Prophylactic Ovary Removal (Both)Hormonal Therapy 03/18/2011 TamoxifenRadiation Therapy 03/03/2013 ExternalHormonal Therapy 03/11/2013 FemaraChemotherapy 05/14/2013 carboplatin, Taxol
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Jan 10, 2011 03:48PM, edited Jan 10, 2011 03:50PM by chinadollmom

I have a BRCA1 variance of uncertain significance. And I have almost no female relatives for reference. But my gyn onc says bilateral, trip neg BC before 50 is a big red flag for genetic involvement. So if the SEs are not too awful, I'm leaning toward being on the conservative side....

Thanks for the info on the hysterectomy -- it definitely helps.

dx: 4/09, Bilateral IDC, 3cm and <2cm, Stage IIa, Grade 3, 0/9 nodes, ER+ and Triple Neg.

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Jan 10, 2011 03:56PM lago wrote:

chinadollmom I tested negative for BRCA but if I did I would be doing the same as you and ripping my ovaries out. I'm 49. Sorry don't know anything about the SE but I know my SE from chemopause hasn't been too bad. I get some night flashes but they are not that bad. Only once was I dripping wet. I was peri-menopausal when I started. I would think being peri-menopausal would help but everyone is different.

What does your onc say?

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010

Dx 7/13/2010, IDC, 5cm, Stage IIb, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Jan 10, 2011 04:05PM, edited Jan 10, 2011 04:08PM by chinadollmom

Iago, my onc is the one doc I haven't discussed this with yet. (I have an appointment coming up.) But my gut feeling is that even if he says no, my radiologist and my gyn onc (who used to be the head of the genetics dept. where I got my testing done) say yes, so I would go with the majority unless I think the SEs will be a huge issue.

Although I have considered going to the local Mayo Clinic for another opinion.

dx: 4/09, Bilateral IDC, 3cm and <2cm, Stage IIa, Grade 3, 0/9 nodes, ER+ and Triple Neg.

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Jan 10, 2011 04:12PM lago wrote:

BTW how are you both ER+ and Triple negative?

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010

Dx 7/13/2010, IDC, 5cm, Stage IIb, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Jan 10, 2011 04:16PM, edited Jan 10, 2011 04:18PM by chinadollmom

I had bilateral BC -- one tumor on each side at the same time. The gyn onc also says he would have recommended a double masectomy. But at the time, I wasn't aware of the potential genetic involvement, and had lumpectomies.

dx: 4/09, Bilateral IDC, 3cm and <2cm, Stage IIa, Grade 3, 0/9 nodes, ER+ and Triple Neg.

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Jan 10, 2011 04:18PM bdavis wrote:

I say at this point have them taken out. I am 48 next week, starting chemo next week and will start tamoxofen in the summer.  I have already dicussed my ovaries with my gyn and said I'd like to easy into menapause with chemo and tamoxofen and then next year, just before 49 perhas go forward with the ovaries... and it will be a sure thing if my genetic testing is positive. I had a score of 19 on the ca-125 test (20 being positive) and my ultrasound was good... but I also had a ER/PR+ of 98% so getting rid of my estrogen is a goal... just don't want to shock my body, so I am delaying.

Betsy... 1.9cm tumor, micromet in SN, ER/PR+ 98% .. Had my BMX and Reconstruction in NOLA

Dx 11/12/2010, IDC, 1cm, Stage IIa, Grade 2, 1/2 nodes, ER+/PR+, HER2-
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Jan 10, 2011 04:41PM Leah_S wrote:

chinadollmom, I recently had an ooph but not hyst. I'm post-meno with a strong family history of bc & ovarian ca even though I'm BRCA-. The onc still considered me at a very high risk for ovarian ca, as did the gyn and the gyn-onc. From the time I went on Femara in June I'd had some heavy-duty hot flashes which began to taper off and eventually stopped after about 3 months. Then I had the ooph in Nov and after that I had 3 (yes I counted) mild hot flashes within a day or so of the surgery and then nothing.

None of my docs recommended a hyst. The onc said I was not at a higher risk for uterine ca and said there was no reason to remove a healthy organ.The uterus helps to hold other pelvic organs in place and a lot of women have incontinence problems following a hyst. I'll tell you the truth, after 6 kids there's quite a bit of weakness in that area already so I saw no reason to add to it.

Best of luck with your decision.

Leah

Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Jan 10, 2011 06:56PM toomuch wrote:

Chinadollmom - I'm 48 was in chemopause when I decided to have my oophorectomy. I did not have even one hot flash but I am having some migrating joint pain which I think is from lack of estrogen. It's not debilitating, if it's really bothering me I take Advil and it goes away.

My radiation oncologist and surgeon both supported my decision. My oncologist didn't think that it was necessary. He said he was trying to save organs. I tested BRCA neg but with a strong FH of cancer. I went ahead with the surgery anyway. Good luck making your decision.

"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before"

Dx 7/13/2010, ILC, <1cm, Stage IIa, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Jan 10, 2011 07:07PM cd1234 wrote:

Hi Chinadollmom,

I am not BRAC positive and I am only 39, but I had an ooph / hyster on October 1st, and I feel pretty good. I do not sleep as well as I did before the ooph, but other than that no problems. I had to have my ovaries out because I developed a disease as a result of Tamoxifen. My ob/gyn suggested the full hysterectomy because I had some uterine thickening and other strange things in my uterus. I am happy with my decision. 

Dx 1/15/2009, ILC, 1cm, Stage IIa, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Jan 10, 2011 07:11PM faithfulheart wrote:

Hi Chinadollmom,

I am 42 and I had an  ooph in June. I was  98% er pos BRCA neg, but both my onc,  and bs highly

recomended it. No regrets at all,  Just glad to have less estrogen to feed any beasty cells that might be left.  My cancer was agressive so we really went at it with full force.

BTW,  no hot flashes at all!  I do get kinda of weepy,  but really,  that seems pretty normal after this last year.

Good luck in your choice, do what you feel in your heart, thats what I did!

Faithfulheart

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Jan 11, 2011 05:08AM aussieched wrote:

Hi Chinadollmum

I was diagnosed with IDC left breast March 07 at the age of 52.  I first had a lumpectomy, second surgery was axillary clearance with a total of 30 nodes taken out.  The sentinal node was positive so my medical team suggested that an oophorectomy would be a good option for me instead of chemo, so that was my 3rd surgery, all within 3 weeks, so I was totally over it all after I had the ooophorectomy.  I was 80% ER+ and 80% PR positive, but had not started menopause.

Obviously after the oophorectomy I went into total menopause overnight, and it was a pretty hard time. For the first few weeks my body went into total withdrawal, and I experienced the shakes pretty bad, however night time was the worst. I experienced hot sweats 24 hours per day, and even though I am 3.5 years down the track now, the hot flushes still persist all the time, however I must say they are not near as bad as they were during the first 12 months after surgery.  I still have a fan at my desk at work (and also in my bedroom for night) and I do use it a lot when I have the hot sweats, which I have even during the winter time.  I also find it much harder to sleep at night.  Most nights I would not get any more than about 4 hours of sleep, and the hot sweats probably don't help there either.

I am currently still on an AI, Femara, so it may also be responsible for the ongoing hot sweats also.  My hair has thinned dramatically, and commenced to fall out within about 2 weeks of the oophorectomy, however again, I believe Femara may also have to take some responsibility for this. Even though it has not been easy, I would do it all again, if I knew it was going to help from having a recurrence.  From the threads here, it would appear that a lot of ladies are having the chemical shutdown of the ovaries with injections, instead of the surgery, however I decided on the surgery as I would have been fairly close to menopause anyway.  Yes, and as faithfulheart noted above, I also do get very weepy, it doesn't take much to get me going.

Good luck with your decision.

ched

Dx 5/11/2007, IDC, 2cm, Stage IIa, Grade 1, 1/30 nodes, ER+/PR+, HER2-Surgery 05/30/2007 Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Prophylactic Ovary Removal (Both)
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Jan 11, 2011 10:52AM Annabella58 wrote:

Hi, I was 51 had had bc two times in the same breast, and no one ever even suggested that I take the little cancer bombs out to me.  I researched it and asked about it myself.  Once I brought it up, everyone thought it a very good idea, so I went ahead with it.

I had a "supra cervical" laparascopic hyst/ooph.  this is where they leave the plug of the cervix in, which supports the super structure of the vaginal wall, thus you do not get the incontinence, prolapse, etc.  It's been fine.

I had a few "warm ups" (I was nowhere near menopause either, and had had 6 months of lupron shots, heavily er+) but nothing like the horror tales you hear of.  I feel fine.  I do have some dryness issues, have been using "very private" which works well.  I got a few UTIs, got cranberry extract pills which have been wonderful too.

PM me if I can help you further on this.  It was a very easy surgery, no regrets, whatsoever. 

good luck!

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Jan 11, 2011 10:54AM Annabella58 wrote:

ched, my hair has thinned, that is the one highly annoying bit of this.  What, if anything did you do for this?  How do you cope with it?

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Jan 11, 2011 01:24PM chinadollmom wrote:

Thanks, everyone, for your replies.

I'd like to hear if there's anything you can do about the thinning hair -- I finally have "good" hair with body after the chemo, and now I hear I may lose some of it!

dx: 4/09, Bilateral IDC, 3cm and <2cm, Stage IIa, Grade 3, 0/9 nodes, ER+ and Triple Neg.

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Jan 11, 2011 04:39PM don23 wrote:

chinadollmom-I was on tamoxifen before my ooph/hysterectomy and that is when my hair started thinning out. It wasn't too bad though. I used to have a good head of hair. I think as we age it starts thinning out anyway. I had my ooph/hyster about eight months ago and the only side effect I have from that is dryness and some joint pain. I started Arimidex shortly after that so I don't know what to blame my side effects on. They are definitely manageable though.

Dx 4/10/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jan 12, 2011 02:41AM aussieched wrote:

Hi Anniealso, I have not done anything about my hair. I have gone very grey since diagnosis, however I have been advised not to get it coloured, as it may speed up the hair loss.  I had it cut last week, and the hairdresser said it is very very thin now, and I can see very bare patches when I comb it, and standing in the sun, highlights the old skull through it.  It has been falling out for over 3 years now, so when I get to the five years of Femara, I would expect there won't be much of it left.  I have the feeling that my onc may be going to suggest that I continue longer than the 5 years, because I am high risk, however that will depend on whether my bones are still holding up.  Every time I have a bone density, it is dropping quite a bit, and that would be from the oophorectomy and Femara combined.

ched.

Dx 5/11/2007, IDC, 2cm, Stage IIa, Grade 1, 1/30 nodes, ER+/PR+, HER2-Surgery 05/30/2007 Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Prophylactic Ovary Removal (Both)
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Jan 12, 2011 03:27PM, edited Jan 12, 2011 03:29PM by faithfulheart

don23,

I am on tamoxifen , started it after the ooph. The joint pain you talked about, can I ask

where do you get it. I have had trouble, at first after ooph, I had a lot everywhere, now mainly on right side

upper side leg. It concerns me a bit,  my onc was not real concerned about it, he said bone met

pain gets worse and worse. The pain I have seems to go up and down. I 'm just not ready to get a bone scan. not mentally there yet.

I however, don't want to be in denial either. I guess my hope is that it is the lack of est. from

the ooph, and the tamox. I am sorry to ramble and make this about me!!!  I would love any feed back on this!!!

thanks sisters, btw I color the crap out of my hair, I did not now about the hair loss. yikes!!!

faithfulheart

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Jan 12, 2011 05:50PM don23 wrote:

faithfulheart - you asked about my joint pain. The pain I have seems to be in my wrists and my hip area or upper side of my leg like you.  I lay on my side when I sleep and the pain wakes me up so I have to move to the other side. Then that pain wakes me up again. I seem to have keep moving from side to side to relieve the pain. Once I move off that side the pain goes away. Not sure what that is all about. The pain in my wrists sometimes wakes me up as well. I really don't get a good night sleep anymore. I also have soreness when I get up from sitting too long. That too goes away once I'm up and moving. I'm not sure if these causes are from the ooph/hyster or the Arimidex. I have an appt. with my onco. in February and that is on my list of questions. I did have a DEXA scan before I started Arimidex and that was normal. I sure hope it's not bone mets Frown
Dx 4/10/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Mar 30, 2012 08:55PM GirlPowerDebbie wrote:

Glad I found this thread.

I am 54, diagnosed June 2011, just finished radiation after lumpectomy, chemo.  My oldest sister was BC diagnosed at 35 (she is 67 now).  Her middle daughter, BRCA1+, died from BC at age 38.  Her oldest daughter just diagnosed with stage 3 ovarian cancer.  I was placed on Arimidex upon completion of radiation.  I am BRCA1- for the family mutation.  I was post-menopausal when I was diagnosed.  Prior to finding out my BRCA status we discussed prophylactic BMX & ooph, but when we found out I was negative we took that off the table.  Now that Traci has been diagnosed with OC I feel like a ticking time bomb and I see no reason not to have the ooph. 

Several of you are almost in the same situation and I am hearing no regrets from any of you.  Can't hurt, might help.

Thanks for your personal stories, they helped me.

Debbie

Dx 6/10/2011, IDC, 2cm, Stage II, Grade 3, 0/2 nodes, ER-/PR+, HER2-
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Apr 10, 2012 09:59AM, edited Apr 10, 2012 10:00AM by isee

Hi everyone,

I'm BRCA2 positive ....as is one other of my 4 siblings....2 are fine as they tested negative. Both myself and my sister who is BRCA2+ have had breast cancer. My sister is a 20 year survivor...she had it at 37 and is now 57. I was diagnosed just over a year ago...finished radiation last June. I was very lucky and didn't have to have any chemo. I turned down Tamoxifen as it really didn't make a huge difference for me apparently. I had Invasive Tubular Carcinoma...a rare type with a very good prognosis. Due to the BRCA2 status, I am scheduled to have tubes and ovaries out...as well as a hysterectomy on May 11th. I am in Canada and am being followed up every 6 months...alternating MRI / mammograms. Just had my appointment last week and am now waiting for an appointment for an ultrasound...just to make sure it is not on the other side. I'm not really expecting any big side effects of this surgery as I am 8 years post meno at 53 years old. I wanted to ask ....I had an exhertion headpain on the left side for around 4 years...this horrible headpain went away about the same time my radiation finished...anyone have anything like that?

What doesn't kill you makes you stronger! Invasive Tubular Carcinoma - BRCA2+

Dx 2/9/2011, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-