Ooph or not?

mary625

You can see from my stats below that I am Stage IIIC with a highly ER/PR positive tumor.  My second chemo put me into menopause in October 2011.  I'm on Femara.  I never had a hot flash (not saying this to brag) before or after starting Femara.  I saw a week or so ago that there was a study relating good outcomes on AI's to those who were experiencing hot flashes, so I am concerned.  My Onc has said several times that I don't need an ooph.  I finally got in to see a new (and better) GYN who said she doesn't know how much it would benefit me but she is willing to do it.  My Internist is also saying no--that the risks of the surgery outweigh the possible benefits.  (As an aside, I really wonder why I am being pressed so hard to have recon and undergo all of that anesthesia for no medical, only cosmetic benefit, but for possible medical benefit, it's too risky?)  I don't know what to do with all of this conflicting advice.  I was hoping to hear from post-menopausal women who made the decision either way and what their reasons were.  Thanks. 

Lily55

I was refused ooph, told that most of oestrogen produced post menopause is is conversion from androgens or fat and not from ovaries, not sure this helps you!

TectonicShift

I think I'm about the same as you in every way in terms of diagnosis and prognosis, and my onc said I should have ooph and hyst. Honestly I want the hyst. because I have numerous cysts and polyps that should be monitored and I cannot IMAGINE ever enduring a speculum again. Apart from the estrogen and BC mets, I don't want to have to worry about any more female cancers.

Edited to add: My first onc put me on Lupron shots every three months to shut down ovaries. He said I can do Lupron or I can do ooph. My second onc (I've temporarily relocated to another part of the country) says I should have hysterectomy and ooph. Also he said I should have other breast removed. Lots of oncs and surgeons are against removing "healthy" breasts but my new onc thinks it should come off. I did have IDC, LCIS, and DCIS in the diseased breast. LCIS is a marker for more cancer including in the opposite breast. My new onc is VERY aggressive and proactive in treatment. He has me on additional treatments to keep me healthy. I am very grateful.

karen1956

Mary.....my onc recommended that I have an ooph as part of my original Tx protocol....for me, one less thing to worry about.....I had bilat, then chemo, rads started on AI's following a shot of Lupron and then 6 or so weeks post rads, had the ooph.  My periods stopped after my first chemo...I was peri-menopause prior to Dx, but it was still rough being sent into instant menopause....its now 6 1/2 years and I know that I made the right decision....my onc said since there is no association between breast cancer and uteran cancer, no reason to take everything out...and since I was not having other female problems, I was happy to just do the ooph laproscopically (originally my gyn..who btw I fired 10 days before my surgery...was going to do a TAH.....)

faithfulheart

I had an ooph... And have no regrets!! My onc. he is of the team that believes it just makes since!!

Take the main source that can feed those cells and let the AI do the rest!! I was very highly pos. for Est.

I also think I would have worried about ovarian. Cancer too!! I tend to worry!! I will say it has not been easy, I was 41 and having very regular periods and bam!! One day post menopause!!! It's been an adjustment to say the least!! One day at a time... I take a small dose of Effexor to help with mood swings and hot flashes, it's still hard.... I hope it will help my survival!!!!

Do what is best for you it is a big change if your young!!! I also have young kids and I just want to do all I can to keep the beast away!!

Good luck!!!

Hugs to all

Steph

lovujja

Hi,

I am in the same boat too. I was diagnosed BC with lots of LN +ve in 2011. Did Bil-mastectomy, chemo and radiation. Now one year in Tamoxifen, don't have horrible side effects but worried about overian and uterine cancer as well as survival of the life. My period stoped after 3rd chemo and haven't return since. Having two little kids make you to do anything to live to see them grow. Any suggestion will be wonderful.

mary625

Thanks everyone for the responses.  I was 49 at diagnosis, so I think the onc's feeling is that I was close enough to menopause.  However, from what little research I've done (will do more), the ovaries never really shut down but just decrease their production...in natural menopause.  I don't know about chemopause.  I think that those for whom the oncs have recommended the ooph are younger than I am.  I'm probably sitting right on the fence or on the line between the yes and no recommendation. 

I would say keep searching for another GYN if you feel this surgery is right for you.  I believed the first GYN (who I decided to "fire" for letting this situation develop on her watch) and the ONC that I wasn't a candidate, but new GYN says absolutely you can do this AND insurance will definitely pay.  And I'm not BRCA positive.

hopefour

If I am understanding you correctly you are going ahead with the Ooph!!?? I wanted an Ooph as soon as I heard I was 95% ER+ Pr+....but was peri-menopause and told no for the same reasons you were. I than developed blood clots in my legs do to Chemo...had to have my veins stripped in my legs due to all the clots ( have always had leg vein issues). After the clots my MO said I had to have a Ooph go on a Als...what I wanted all along! I have no regrets and feel I have been the most aggressive I can in this BC fight!

DCMom

I wasn't quite menopausal, but was perimenopausal when I had my oophrectomy.  There seemed to be a lot of differences of opinion from one doctor to the next, but after a cyst showed up on one and I had to keep coming back for evaluations I brought it up with my gynecologist.  In comparison to the oncologists they were all about getting them out ("you don't need them anymore").  The biggest frustration I had was that in this time of digital information I couldn't get an answer about the statistics of with vs without ovaries.  Mine are gone now and of course there are those moments I second guess and wonder if it was overkill, however I am absolutely confident that I never wanted to wonder "what if" IF I ever had a reoccurence.  I haven't noticed much of a difference between before and after since I was already on Tamoxifen which kept me in a perimenopausal state.

Finally if Tamoxifen and Arimidex are both to block hormones I just don't understand why we would want to keep our hormone producing center   

new2bc

Hi ladies,

I saw my ob/gyn last week and there is a possibilty that I may need to remove my uterus and ovaries. I was supposed to take Tamoxifen last month but I delayed it to see my ob/gyn. When I saw my oncologist the last time, I remember him saying that even if I take my ovaries out, I still can take Tamoxifen instead of AI, but the chances of it helping me as far as reoccurrence may be a little less than AI. But Tamoxifen is better for my  body than AI.  Is this true? I am scared of having ovarian cancer or cancer of the uterus b/c of Tamoxifen and taking the ovaries and the uterus puts my mind at ease since I am ER+, PR+, HER-. I am 51 years old and still premenopausal. Has anyone here stayed on Tamoxifen even after the ovaries were out? I had double mastectomy last January and radiation afterwards. Do you think taking the ovaries out is a good decision? I had a polyp in my uterus and my ob/gyn said that he has to take the polyp out before I start Tamoxifen. Then I started to think why not take all of them out? What do you think?

mary625

I'm getting one step closer to getting the ooph. I'm scheduled for November 19, but I have to get approval from my primary care doctor tomorrow. I doubt that I have anything in my health that would prohibit the surgery, but he has been against it as unnecessary from the start so I don't know what's going to happen. I wanted to bump this up and ask if there are more thoughts about whether to have an ooph at this point. I am two years post diagnosis, strongly ER+/PR+, 2nd chemo stopped my periods, never had a hot flash so that has been the only sign of menopause.

SpecialK

mary - I am not stage III, but did have a total abdominal hyst/ooph nine years prior to BC diagnosis. I don't regret it as I had an undiagnosed 3cm pre-malignant mass in the right ovary that was a post-op pathology surprise. I posted this to advise that you have a baseline DEXA scan if you have not already done so - you need to know what your bone density status is prior to the ooph since removal of your ovaries can accelerate bone loss, as do aromatase inhibitors. I would also advise carefully monitoring your cholesterol, mine was in the 150's prior to the ooph, jumped to 260 afterward - elevated cholesterol is also a potential side effect of ooph. Good luck!

TectonicShift

Mary Ellen,

Dicke told me I should do a full hysterectomy. He told me to have the prophylactic mastectomy too.

mary625

Tectonic--yes Dicke said yes to the ooph. I just hope I can get past my primary care tomorrow who has to authorize it. I can't get anyone to discuss hysterectomy. I've already had the prophylactic mastectomy.

wintersocks

Hi all, I had my ooph Thurs just gone so I am 4 days post op (ouch!). i am strongly er: 8/8. I was advised by the onc that removal would make no difference to my risk of recurrance as mostly (post men) oestrogen is secreted from other areas.

However, I did have a large ovarian cyst (been told endometriona) that has now gone, and I am pleased about that. Was told by one gynae it is harmless and will self resolve, another says ~we always get these out' - what to believe??

Interestingly, my left ovary had twisted on the tube and died anyway. When I questioned the doctor about this he told me that ovaries post-men often die and usually it is the left. I googled this and indeed it appears to be so!

So all on all i had one removed plus tubes too. But I also needed other stuff done so for me it was a good decision to get them out.

mary625

Wintersocks--how are you feeling? Wondering what your recovery is like.

Well, I saw my primary care today and got the medical authorization. But, I had some slight problems on the EKG...some extra heartbeats called PVCs. I had these before my chemoport procedure, and they delayed the whole thing, leaving me there half sedated and half not, while they brought down cardiology. That was at a different hospital, but I don't want a repeat of it. I was not nervous, but now I am. Once I get done with the surgery, he wants me to go on a holter monitor testing. Oh, joy, more medical problems.

So when his nurse came in to give the EKG, she said to me "why are you having your ovaries out...so you can get outta cooking Thanksgiving dinner?" I just stared at her and very sternly said, "no, so I won't get cancer again." Oh the idiots we have to deal with. This of course prompted an outburst of "oh, my mother in law has ovarian cancer and my niece had breast cancer at age 31." Then "why didn't the doctor make you some boobs like he made for my niece?"

wintersocks

Mary625,

What an idiotic thing to say, I am so sick of docs/nurses thinking they can say what they like. I have whole bag of things I could pull out....that has been said to me..

Thank-you my post op is going ok. I am a little sore, but mainly hurts if I sneeze. I have a few strange things going on in my nether regions (feels like stitches??) but I know I have had a Transobturator Tape Procedure too and a right ureterolysis too (not sure what that is - will Google) and a posterior repair. So slightly more then an oophrectomy.

It does not feel to be a major op as such. I have 3 plasters on my abdo, one at belly button and one low down centre and one slightly above to the left. I think this is the laporascopy incisions. I do not have the write up from the docs yet, just the discharge note.

I have been told that I must not lift for 6 weeks.....

I feel pleased I have had the ooph, one less thing to worry about. I am post men highly er + 8/8 and on Femara. Having said that one doc 'tut tutted' when he heard I was having it done.

I am sorry to hear of your additional health problems, it's such a bore to have other stuff besides bc going on isn't it?

mary625

Yes, it is very depressing to think of other health problems. Probably though these PVCs are harmless from what I'm told. I just don't want them to cause my procedure to be delayed as they did with my port procedure. I got an email from my doctor tonight wondering why I was upset when I left. I told him about what the nurse had said to me. He is a caring doctor...just not surrounded by the best staff. Sigh.

peacestrength

I go for my oophorectomy consult next Friday. 

I'll be asking about hysterectomy vs. oophorectomy.  

What is the rationale of doing a hysterectomy instead of an ooph?  Aren't the ovaries the main hormone producers?  I understand that the adrenals produce small amounts too.  I asked why women who are postmenopausal still get hormone positive bc, the answer was:  the ovaries never completely shutdown even after menopause.  Interesting.

Wintersocks - I hope you are recovering well.

Mary - please let us know how you are.

mary625

I am doing fine...just waiting. Gee, you brought up an important point...if the ovaries shut down at menopause, then how do women get hormone positive cancer after menopause? Never thought of that. Well, now that I've decided to do it, everybody including the onc who told me several times it was not necessary seem to be all fat and happy about it. It's set up for one week from today. Please cross fingers that I'm not going to have problems with the PVCs which are harmless extra heartbeats. I was having them yesterday in my pre-op, and if that happens before the surgery, they may delay to call in cardiology. That happened with my port procedure. Of course, this is more elective than the port and in another hospital.

Regarding the uterus, it was explained to me that the medical industry has ignored the similar effects that Femara and AI's can have on the uterus similar to Tamoxifen. I know there's some risk there, but for now, I'm going to leave mine in. I decided the risk was minimal and I am willing to accept it. So I say, with a maternal grandmother who died at 42 from uterine cancer (at least we believe that, but it could have been cervical). I would have to do a lot more petitioning to get a hysterectomy.

You know, I'd never heard about the adrenals until last night a very smart friend asked why am I not having those out as well. However, the side effects are probably pretty bad.