Hysterectomy or Oophorectomy--Give me your thoughts

aimster1123

Hi there,

This is my 2nd time with BC.  First time was 4 years ago, and I had lumpectomy, chemo and radiation, followed by Tamoxifen.  I also had genetic testing done, and found out that I do NOT have the BRCA defects.  Given that, I had a only a 3% chance of recurrence, but I guess I got lucky.

This last dx was in early November, despite being on Tamoxifen. The tumor was in the same place as the first one, but it's not clear if it was a recurrence or a new primary, although both tumors were ER/PR+.  This time I've already had bilateral mastectomy and chemo, and am now receiving Lupron shots (to put me in menopause, since I'm only 42) so that I can take Arimidex. This is because the Tamoxifen proved to not work in my case, so my Dr. theorizes that I don't metabolize it correctly.  The hope is that Arimidex WILL work to keep me from having another recurrence. 

So, I'm planning to have my ovaries removed at the end of the summer, to make the menopause a permanent thing.  And the decision I'm trying to make before then is, should I have only the ovaries removed, or should I just go ahead and have a full hysterectomy while I'm at it?

My onc says I only need to have the ovaries removed as far as he is concerned.  I do have endometriosis (fairly widespread, though I suffer no symptoms other than infertility--both my kids are adopted) so I had thought that I might as well take out the uterus now, just so I won't have to do it later if/when the endo gets really bad.  But my surgeon for this says that by removing the ovaries the endometriosis will die anyway (once it's not fed by hormones any more) so that's not really a motivator anymore.  I still have the tendency to think, "While we're at it, let's just get rid of everything--it's never done me any good anyway!"  But I recognize that it's a greater risk to have a bigger surgery and I shouldn't just decide to do it without a good reason, probably.

So, I'd be curious if anybody here has any thoughts on this?  Would you take just the ovaries or do the full hysterectomy, and why?  Perhaps some of you have even had to make this same decision.  I would VERY much appreciate the feedback of anyone who responds, though--it will help me think through this and see it from different angles, I think.

Thanks in advance for your input!!!

Amy 

cd1234

Hi Amy,

I had an ooph and hyster.6 months ago when I was 39. I have no regrets. I really did not have any issues with my cervix or uterus, just some thickening of my uterus (probably from Tamox.) My obgyn suggested the complete hysterectomy because I had breast cancer, and just to be safe. I went back and forth with my decision, and then I decided that I did not really want to have another surgery in a few years if I had any more thickening, so I did it.

Take care,

slinky

I am going to have a total hysterectomy soon.  I am BRCA1+, had a BMX and I am on Tamoxifen and Lupron shots.  I figure if they are going to take my ovaries, they might as well take the rest.  I thank God that I already had the opportunity to have children, but if I didn't, I would probably think differently about the whole oomph/hysterectomy route.

epgnyc

Nine years ago I was getting a second opionion on surgery to remove an ovarian tumor which was questionable (my sister had previously had ovarian cancer).  Unbelievably, at the time of that exam they found a breast lump that hadn't been there 7 months prior during exam and mammogram and it turned out I had breast cancer.  My doctor at Memorial Sloan-Kettering in NYC recommended that I only have my ovaries removed rather than a total hysterctomy and his reasoning made sense to me and so I subsequently went with his recommendation and  had a bi-lateral oopherectomy and have been very happy with my decision.  The ovarian tumors turned out to be benign thank god.  I'm not sure how I would have decided however if I'd had other ovarian or endometial problems.  Good luck to you.

Anonymous

Amy,

Hi Amy,

I was dx breast cancer at age 49 in 2006. I had lump/radiation, and cant take tamox cuz I have liver dis. so I had my hyster/ooph in 2007--. Doc said to take everything out, as I wasn't "needing" any of it anymore, and I dont, not really. I miss my ovaries, but it was necessary. I didnt want my uterus because I had problems already, and my mom had uterine ca. To help you along with your decision, go to www.hystersisters.com and do some reading. I happy with my decision, and Im cancer free as of today. Best of luck to you..

annie06

Hi Amy! I feel like you wrote exactly what I have been experiencing! First dx 2006, IDC 1.7 cm, mastectomy, A/c dose dense, tamoxifen. Then prophy mast w/ bilat recon. Found small lump same area as initial dx. Brca neg....was supposedly high metabolized of tamoxifen....yet it failed me. I had one Lupron shot while waiting to get ooph scheduled. Ended up having robotic laproscopic supra cervical hyst with ooph. Turned out I also had endometriosis! So....now on Arimidex. Waiting for oncotype dx to come back. My recovery has been so easy. I am so thankful! Feel free to contact me with any questions!!! We are in this together! And I am 46. It's hard....but doing ok. Praying you are too!

Fearless_One

It never occured to me to get my ovaries removed but not my uterus.   Try to get robotic, it's very uneventful and has a quick recovery.

cp418

I was age 49 premenopause and 100% ER+, PR+ and still had some periods during chemo.  I briefly took Tamoxifen after chemo and rads completed but had issues and felt my periods were trying to turn on again.  I requested the ooph to avoid adding Lupron shots.  Easy robotic procedure and recovery.  I would certainly make the same decision for my strong hormone cancer. 

NanaA

I had  3 lumpectomies before clear margins and and then did chemo and rads due to HER2+.  I had problems with Femara and another AI so they tried tamoxifin.  After only a month I started spotting (after no period for 10 years)  I had an ultrasound and endometrial biopsy done.  I could just have done a D&c but I could not see any reason not to get rid of everything if I was going to have surgery.  I had a lapariscopic hysterectomy and ooph, was only in hospital overnight and off work less than 2 weeks. Only 3 tiny 1/2 inch incisions plus they removed cervix when taking everything out thru vagina. 6 weeks to heal totally there.  Now no possibility of ovarian, cervical or uterine cancer.  I would do it again in a instant.  I have a friend who just found out she has uterine cancer and for treatment she has to go to a hospital over and hour and a half away because a town as big a Champaign-Urbana does not treat uterine cancer here.  Does not sound like something I wanted to even take a risk on developing.  Best wishes with whatever decision you make.  Annette

nancyluvspink

Hi Amy - I have had breast cancer twice also.  I am 47 years old.  I went for the complete hysterectomy.  I figured that while they were in there they might as well take it all.  I have no regrets.  Good luck.  Love Nancy

aimster1123

Hi, all you lovely ladies,

Your input has been so helpful to me!  Thank you.  After an appointment with my oncologist the other day, I've decided to go ahead with the full hysterectomy.  Basically, after having breast cancer twice, I'm just too gun-shy to leave it in there.  If we're in there anyway, let's take it out!  Yes, I recognize it's a longer recovery and there are always risks involved, but I'm willing to live with those and I think I will feel better with it gone.

Thanks again, everybody!!

Amy 

slinky

I will be having a full hysterectomy, too.  I am at high risk and have already had a BMX.  I have undergone so many surgeries in my life, that I hope the hysterectomy will be the last! 

I am more hesitant about the hysterectomy than I was about the BMX.  I guess I really am not ready to go into instant menopause and all the SE's involved.  But, it is what needs to be done so I can get to see life as an old woman.  I hope to live long enough to see great grandchildren!

Twiceasnice

I am so glad I found this thread!  I was diagnosed with BC in 2009, IDC, stage III, ER + (100%), PR + (85%) and Her 2 +. I have been on Tamoxifen for about a year, and have been taking Zolodex injections (similar to Lupron) since about 2009.

I saw my obgyn last month b/c of very light, breakthrough bleeding. Because I'm on tamox, he did an ultrasound, then did a D & C and sampled the tissue and a piece of a fibroid that remains in my uterus.

I see him tomorrow to get the results, and discuss next steps. From our past conversations, I think he is leaning toward a hysterectomy--b/c I am on tamox and fibroids have a tendency to turn cancerous, more so than polyps.  What's odd is that my onc and I have never talked about removing the uterus or ovaries as part of treatment. So I feel like this is all out of the blue. 

I am 43, single and have never had kids, probably unlikely to start now. But I just don't know about having more body parts removed? Has anyone out there had anything similar to my situation but decided to keep their ovaries AND uterus? 

Thanks for whatever insights you can share.