ovary removal/suppression-please help
Comments
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I met with my med. onc. today for my check up between Herceptin treatments and we talked about going on Tamoxifen when my radiation ends. I brought up supressing my ovaries (or removing them altogether). He seemed on the fence on this. He said he just returned from the ASCO conference and the jury was still out on this???? I told him even though I am 39 (just turned June 5th)and pre-menopausal I would like to consider this. I have one child and at this point in the game do not plan on having any more. I had always thought this was they way to go since I am ER /PR +. He still seemed on the fence about it...I was wondering if you girls had any thoughts on this subject? If I need to push for this I will.
Thanks for your help.
MB
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Hi Mb,
I am 44, was 41 at diagnosis almost 3 years ago. My bc was IDC and highly er.pr+. My oncologist had me on Armidex and Zoladex injections (ovary suppression injection) for 1 1/2 years. At his recommendation I finally had those little "estrogen demons" removed a month ago and no longer have to take the Zoladex injections.
The first gynecologist I went to was "very old school" and knew nothing about estrogen postive bc and admitted to my oncologist that he was intimidated by my knowledge on the subject.LOL. He was totally not in agreement with removing them, he had the bed side manner of a toad!
The 2nd gynecologist I went to in February this year, was my age and totally supported having them removed and I had the surgery in May.
I also have a bc survivor friend who just had her ovaries removed this spring, she is 40. Her mom passed away from ovarian cancer at 38, however, my girlfriend was tested for the BRCA gene and did not have it but still went ahead and had her ovaries removed. She said the peace of mind was worth doing it....
All the best in whatever you decide to do.
Michele
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Hi MB,
Well my tale is different. I was 46 with my first dx and went on tamoxifen as my "hormonal/systemic" therapy. I was ER/PR +. The tamoxifen did not work and I had a recurrence of BC 18 months later. So you can see from my perspective my ovaries were not my friends! While tamoxifen does work for most people it is not infallible as my case attests. Given my age and the outcome I would like.....long, happy life.....I had my ovaries removed. I chose this option to insure this time my estrogen maker was really "taken care of". I was concerned shots and "chemopause" would not be enough insurance for me.
I have to say that the SEs of having them removed have been almost non existent.....I had been afraid of a sudden and miserable menopause.
I feel like this was a great decision for me and also helps insure no ovarian cancer in the future....one less thing to worry about.
Each person needs to make their own choice. I can tell you I have no regrets.
Valerie
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Hi! I also have been contemplating this. My mom has ovarian cancer and to me, at 47, i am done with having children. It seems like an easy solution, yet the doctors take a wait and see attitude. I am getting information about a trial, which I whole-heartedly believein helping out others. I am scared to death of menopause and having sever symptoms! That worries me more than having my mastectomy! I am so amazed-here we find out we have breast cancer and each stepseems to hold so manypersonal decisions. I'mnot sure Im in any condition to make them!
D
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MB
Hello,
Just wanted to let you know i'm 34 and was dx at 33 w' bc. I had a bilateral mast. in March and have chosen the removal of the ovaries. My onc. had suggested it and tamox for 5 years, and or chemo?
The removal seemed easier to me, so I will have it done this coming Mon.
I went to see the ob/gyn today who is doing the surgery and her only question was why not a full hyster.?
I was like what? She said well you are on tamox and it can cause uterine cancer. So now i'm confused?
She was a survivor herself of 14 yrs. and had a recurrance 8 yrs. ago. Not sure whats right for you but for me the removal of ovaries was my choice. Goodluck with everything!
Suebee -
Thanks ladies...I think I may press to have the ovaries removed. I like the idea of not having to worry about another cancer spot and being rid of them completely. I hope my med. onc. will go for this.
How was this type of surgery? Time in hospital? Recovery time?
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Just a quick note:
Estrogen doesn't only affect breasts, breast cancer, and the other reproductive equipment.
There are other potential side effects to other body systems associated with not having estrogen. Like heart trouble, like osteoporosis, like brain and cognitive difficulties.
Be sure you consider those side effects for the rest of your life as well.
I'm not saying oopherectomy isn't the best option for many of us with breast cancer - it is.
It's just complicated.
Sue
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I am currently in chemopause and taking tamoxifen. My onc suggested having my ovaries removed so that I could go on an aromtose inhibitor which is more effective. However, my gyn fought me on this. He said his oath says 'do no harm' so why would he take out a perfectly good set of ovaries with a risk of complications. (I have to be on blood thinners for procedure) I brought him literature to back up my plan but it was a conversation with the onc that finally changed his mind.
When it came down to what to remove, my question was 'which procedure had the least risk. He said that removing my uterus and ovaries through the vagina. So that is the plan. July 23 is the date. I will spend 4-5 days in hosp and 6-7 weeks off work.
I should mention that my female gp was against this as well. She was worried about the sudden onset of menopause and its effects. I assured her that I was already feeling the effects with the tamoxifen and given my high chance of recurrance, I was willing to LIVE with that. -
Hi MBpetit,
If you have a oopheroctomy, ovaries only, it is outpatient and done laproscopically. I had no discomfort or issue at all. Of course I had my done when I had my bi lat so between the 2 surgeries the ooph was nothing! The major issue can be abdominal discomfort from the "gas" they put in to do the procedure.
As I mentioned I had no major SE from the immediate menopause. I do think how you handle menopause is somewhat genetic and my Mom had a really smooth menopause. I have an occasional "warm up" but no severe hot flashes to speak of. I did not have any on tamox either. I will go on AIs once my chemo is finished.
Good luck.
Valerie
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My oopherectomy was day surgery, in my case I should have been kept overnight due to the pain. I had to end up going back to hospital an hour after getting home and have a morphine injection. The gas that they pump up your stomach with was the culprit!
I am now almost a month out of my surgery and dont regret having them removed. My cancer was highly estrogen positive and I am on Armidex.
Michele
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I had just turned 49 premenopause when diagnosed and was also strong receptor positive. The chemo put me in chemo pause and my onc wanted to start me out on Lupron shots and Tamox for 1-2 years. He was against the oopherectomy as he felt I was so close to menopause already. However, I didn't care for the side effects I read on Lupron and Tamox. I figure the surgery was easier to move on to AI then waiting 1-2 years. I asked to have hormone levels drawn and he said they were already low.
I pursued the ooperectomy with the support of my breast surgeon (female) and very supportive of the ooph. How often do you read here of someone having later complications and then their onc says 'oh now is the time for an ooph'? So I made the decision myself and feel it was the right one for me.
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I had them out also. I had not tested positive for the genes. But I figured there would be some genetic mutation we'd learn of in the future that I might have. (Btw, doctors discount this.) I didn't want to wake up one day with ovarian cancer that I could have prevented and I didn't feel confident in the screening--transvaginal ultrasounds plus CA 125 twice yearly. (Doctors agree with this.)
There may be new better screening for ovarian cancer on the horizon btw.
What I didn't know is there is prep the night before as though one was having a colonoscopy. What was told to me for laparoscopic day surgery is that you feel discomfort week one and by the end of week two, you cannot remember you had anything done at all. That was true for me. Do not think you are going to work the next day or that you will be full speed the next day.
I had never had abdominal surgery before so I didn't realize getting up would be difficult for a few days. I did this about 6 1/2 yrs after my b.c. and was by then in my 50s.
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Well, I think estrogen is vastly overatted. Just think, if we were in India, or Africa, we would be pregnant or nursing most of the time. With just a period or two between these events. Now I am not advocating 13 children, but obviously the plans for our bodies was one heck of a lot less estrogen then we get today, with birth control. Nature knows best.
I wish to heck my two were gone. We have 4 times the risk of Ovarian Cancer, once we have had BC, and I would just love to be able to say the little suckers were gone. But my insurance says "no".
Oh, many of our gals with sudden menopause have found great relief in Effexor. It is an anti-depressant, but by accident, they found out it helps a whole lot with hot flashes, why the docs don't know this, is a mystery to me.
So if you can get this done, do it.
Hugs, Shirlann
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I am 47 and chemo last winter threw me into menopause, now I'm just on Tamoxifen. I haven't discussed taking the little darlings out with my onc but I may down the road, our primary concern right now since I am stage IV is maintaining stability although NED would be nice.....
The CT scans I've had looking for mets revealed an 8 cm uterine fibroid, I'm hoping if they ever decide we need to do anything about it I can convince them to just go in, take it all out and be done with worrying about it. -
I was 46 at dx, premen. and highly er+ Onc gave me the choice between oopherectomy or Lupron. Decided for time being I would go with Lupron. At first it was to see how I respond. Now its about control. I can decide when I want to have procedure and work it into my plans rather than the other way around. Also on Femara and Zometa. My doc has some concerns about Effexor--some people are reporting bad nightmares with it--its recent so theres not much info about that SE yet. Decided to skip it since I don't sleep well already.
Elaine
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Hi MB,
I am on Lupron injections now and taking Femara. I just turned 46 and I am nowhere near meno.
My gyn felt that this was a more gradual way of getting used to menopause for me. By being on the Lupron I gradually reached the post-meno level. Now when I do get my ovaries out, which I plan on doing in the fall, it won't be such a sudden shock to my system.
I am not having any side effects from the Femara so I like being on it.
Hugs,
g
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Hi ladies, just weighing in my two cents here...
I have had my second recurrence of bc again, highly estrogen positive. I am 52 and not in menopause yet. Chemopause is perhaps it, but they told me the blood tests are unreliable.
My onc suggested lupron, but I have taken it for fertility txts and omg, it made me nuts. Want nothing to do with it ever again. I also do not want to feel like a ticking time bomb.
I am opting for oopherectomy and full hysterectomy. These can both be done at the same time laparoscopically, gals. Two days in hospital, two week recovery, prob. up to speed by 2nd week.
Onc is on board with decision, I've had enough already!!! Does anyone know if one goes onto arimidex first after finishing chemo and mastect. before surgery or do they go ahead with ooph/hysterectomy first? I have a foob to finish up here as well.
Good luck to everyone in the decision process, for me (no genetics) but having been thru this twice, that was enough for me. Out they go!
I am not afraid of heart issues, bone issues, cognitive issues, as much as estrogen at this point. If we went thru menopause naturally, all those issues come up anyway,as part of getting on.
love to all of you making these tough choices
annie
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Hi, I am 47, had lumpectomy and radiation therapy. I had the oncogene testing that helped make my decision regarding further treatment. I scored a 15 which is the higher end of the low range, beginning of intermediate range. I was offered chemically induced menopause with Lupron injections which I have elected to do. So far no side effects. This will allow me to be on Arimidex instead of Tamoxifen which carries a lower risk of blood clots, but may cause bone and joint aches and pains. It seems that there are many variables in making these decisions ie, stage,grade, oncogene score, age of pt, etc. It is good however to be given choices in treatment strategies and be able to participate in treatment decisions.
Missy
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It is a personal decision. Until results are back on the SOFT trials, there is no clear-cut answer about what hormonal therapy is best for pre-menopaual women.
I am ER/PR+ >90% and an Intermediate Metabolizer of Tamoxifen, meaning I only have half the capacity to metabolize it. Since I can't get full benefit from Tamox. ,my primary oncologist (in Tulsa) and I were discussing doing an ooph and moving on to an AI (he won't do AI + OS).
Seemed like the plan.
THEN, we consulted with my "other" oncologist at Mass General/Harvard, who is very involved in research, ASCO, etc... she talked us out of doing the ooph OR ovarian surppression.
Basically, it is a balance between risk and rewards. As a 40 yr old with stage 2a cancer, she doesn't believe the benefit I might see by eliminating more estrogen is counterbalanced by the risk to my bones, heart, cognitive function and quality of life. If my recurrance risk was higher, she might have a different opinion.
Like your doctor, she believes the jury is out on this issue. She also said it was a hot topic at ASCO. May be one of those areas in which less treatment actually has more long-term benefits than "aggressive" treatment.
Still, it is tough for me to accept. I was mentally prepared for the ooph.
Stephanie
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Hi to Missy:
I scored on the higher side of the low range also, making a recurrence possible. I am getting the first lupron shot today (still don't like this, but I have a 20% possibility of those ovaries starting up again!) Since they are the culprits with the excess estrogen causing the bc, we have to quiet them down.
It is a very personal decision, they do know of the issues such as heart, cognitive, bone stuff possibilies with ooph, but say not as great a risk of that as returning cancer. Since I am now in chempause, will be getting the ooph. They all agree smart thing to do, since my onc goes to the cancer board at Sloane Kettering, he is really up on all this. Having heart, cognitive, bone issues is not a definite and would happen with natural menopause (or not) anyway. They tell me It is a possible risk factor, not a side effect. So I am going ahead, as I am 52 and have had this twice. I had a lumpectomy, rads, 5 years of tamoxifen and one year off tamoxifen, again had this, so the hell with it. I am going to be proactive here. My husband's bs partners' wife had bc 15 years ago, A/C chemo and lumpectomy and rads, now has it spread thru out her entire body and organs, I am wanting to be safe, here.
Missy, I am delighted to hear you have had no side effects with lupron, I am hoping for that too!
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Hi Missy, seems we have similar conditions, I just responded to another post of yours. I am turning 47 next month, lumpectomy, radiation, lupron, tamoxifen. Also had the oncogene test with a score of 19. Went through a struggle in deciding about treatment, went to 2 oncologists who had completely different recommendations on treatment. Went to another 2 who agreed with one another and that is how i decided on treatment. I have been on lupron and tamoxifin for 6 months. Now need to determine whether I am truly in menopause and whether I should switch to an aromatase inhibitor which it sounds like you did. I am having my hormone levels checked. If I am truly in menopause the dr said it is up to me if i want to switch. The medical community seems to be clear on Tamoxifen for pre-menopausal, AI for post-menopausal and not sure if you start pre and become post...studies are going on now...what were you told?
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Hi Anniebelle and Meg, I responded to Meg on another forum. My hormone levels are checked monthly so the doc could tell I was definitely in menopause. They use the same tests (FSH, LH, estradiol levels) that would be checked in women going through "normal menopause". I also had a baseline bone density score before starting Arimidex, and will have one yearly to monitor for osteopenia, osteoporosis. I do take Vitamin D 2000 IU daily since I live in the Northeast, am fair skinned, and avoid the sun. As I said on the other forum the oncologist said if I started on Tamoxifen she would have kept me on for 2 years before switching to Arimidex. I can ask her if there is any research to support this when I see her at my next appointment (mid Sept).
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Hi Megxyz and Missy,
My intial dx was metastatic bc, I am triple positive. Because I was high hormone positive my first line treatment is AIs and Lupron. I was not in menpause yet (was 46 at dx, now 48) so dr put me on monthly dose of Lupron to induce menpause by shutting down ovaries and also put me on Femara since I am now in "menoapuse". He said it is hard to tell if/when I go thru menopause naturally since the system will not have a chance to go thru it as long as I am on the Lupron. Blood test while on Lupron won't tell you anything regarding natural menopause since the Lupron is shutting down ovaries and estorgen levels will be low. Other than menopause symtoms you should be ok by way of side effects. Everyone reacts and tolerates the drugs so differently.
Good luck to you both
Elaine
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From the research I've gathered, they don't like to remove a woman's ovaries until her mid 40's. By this age; our bodies are supposedly producing less estrogen naturally. It's a known fact estrogen plays a big role in keeping our body and mind functioning properly.
Estrogen it's a double edge sword......
I was dx at 43. I'm now 45. I had a lumpectomy, the tumor was ER/PR + , had 4 rounds of chemo (A/C) and 33.5 radiation treatments. I took Tamoxifen from June to Oct. when I had my ovaries removed. It was an extremely difficult decision to make. It was done laproscopic and I took a week off from work to rest. I was better in 2 days, by the 3rd day I was able to get around really well. Since b/c runs in my family I felt I HAD to do as much as possible to prevent any re-occurance. I'm on Aromasin; and it's disablingly torture for me. I'm considering opting out at this point. I have an appt. with my Onc. 8/29 to discuss this matter. Another b/c survivor sister is using DIM. http://www.activamune.com/?gclid=COeCkvijkpUCFQ60HgodLiJ4fg I'm considering giving it a shot as well.
Best of luck in your decision.
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Hi, I was 39 when diagnosed and asked about doing an ooph but my doctor didn't want to. I had Zoladex injections for two years when I seriously suffered with hot flashes and aches in my feet - menopausal symptoms. I am so pleased that I didn't do the ooph as my quality of life was just so much worse than it is now I've finished the injections. I don't have too many problems with just the tamoxifen. Hope this helps with your decision.
Hugs
Mags
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Hi all:
Well, first lupron inj. so far, so good, do notice some achey stuff in feet and legs first few days, but it tends to wear off with the day. I am interested in some women taking Vit. D for this and will investigate it with my onc. when I see him on 9/3, I think it's a follow up to being arimidex as I am "in menopause" (52) and just had lupron.
No hot flashes, just some subtle warmings which I already had with chemo pause anyway.
Doesn't seem like such a big deal after all. I want to be safe!! Anybody done the ooph and what was your recovery time for the laparoscopic one if you had it?
Be well everybody!
xoxo
annie
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KC1 - I have a question for you - you seem two years out ahead of me, although we're the same age now. I'm having a lumpectomy on Wednesday. The oncologist I spoke with said I'm a candidate for Tamoxifen - the biopsy indicated the tumor was highly er/pr receptive. He also mentioned ovarian suppression - "shutting down" my ovaries for two years. What motivated you to go ahead and get your ovaries out? Tamoxifen issues? It doesn't sound like you're having much fun with A/I treatments... sorry to hear about that. I just finished agonizing over a surgery choice (hopefully, it will be the right one for now), and I am aware that I'm going to be up against a whole other series of decisions once the pathology is back regarding systemic treatment. Who knew I should have taken some time to study oncology for the last couple of years?
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Just adding my two cents since I am now deciding this. My sister was 38 when dx and I was 49 at dx. She had a mastectomy and chemo, I had a bilateral and DD chemo. She has had problems with cervical dysplasia the last several years and I convinced her to have her ovaries removed and a hysterectomy. She is still having problems and will be seeing a gynecologic oncologist later this week. I had the genetic testing done and am positive for BRCA2. Because my risk of having ovarian cancer is 40% higher, I am having my ovaries removed early next year. My gyn., who by the way, called me yesterday, a Sunday!, did tell me that he didn't think I needed a hysterectomy unless I was having problems, which I'm not. Since I'm on aromosin anyway, I don't think that I would experience terrible side effects from having my ovaries removed. Since I had a tram flap he will check to make sure that I will have no problems with removal since he does his laproscopically. Here's an added bonus - I also have to have a bunion removed so I will be able to have both procedures done at the same time so I don't have to take quite so much time off of work.
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I just had my second Zoladex shot yesterday and am on tamoxifen. I was dx at 46 and in chemopause. I'm very confused - and my oncologist is not much help - about the pros/cons of ovary removal which would have me be treated as 'post-menopausal' versus still being treated as pre-menopausal. Also it sounds like some of you are on AIs with the Zoladex/Lupron ovary suppression - that is, being treated as post-menopause because of the chemical suppression.
I think the bottom line I am trying to figure out is: is it "better" to be post-menopausal than pre- in terms of likelihood of recurrence? If so, seems like a no-brainer that I should opt for the oopherectomy since my oncologist will otherwise treat me as pre-. She told me the only way anyone is considered definitely post-menopausal is 1) over 60, 2) no period for 1 year, or 3) ovaries removed. And, with chemo or chemical ovary suppression, the "no period for 1 year" doesn't count. She even said that on tamoxifen alone (after 2-3 yrs of Zoladex) having no periods won't count since it can suppress ovaries also.
Maybe I am looking for too much certainty in this - as someone said, being pre-menopausal at dx complicates things. I just want to give myself the absolute best chance of survival while trying not to harm the rest of my body more than necessary.
This thread is wonderful - I'm glad I found it TODAY!
-Leila
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I'm also struggling with this decision. My onc hasn't been very helpful. Studies have been completed regarding HT on post-menopausal women and have shown that AI's are more effective than Tamox. There is a study in progress that is trying to determine is tamox alone or ovary suppression and AI is better for pre-menopausal women but the results won't be known any time soon. Being pre-menopausal really does complicate things.
I have several concerns about tamox.
1. What if Tamox doesn't work? Is there a test we can do to make sure that the Tamox will bind with cancer and prevent growth? Onc's response - There is a test but we don't order it. Tamox doesn't work for everyone but it's very rare.
2. Should I be tested for BRCA2 to see if I'm predisposed to ovarian or uterine cancer? Onc's response - we don't usually do this test unless there is a family history.
3. Would it be better to have ovaries removed and do AI versus tamox alone? Onc's response - We would never suggest that you have your ovaries removed - there are just too many serious side effect (bone loss, trauma of bringing on menopause too early).
She suggested I consider joining the study of HT on pre-menopausal women (suppression/AI or tamox). Otherwise, they want me to start tamox when I'm done with rads. I'm just not comfortable with either option at this point. I'd like better information before making the decision but I guess this is just a gray area.
Am I asking the wrong questions? Should I insist on having further testing before I start tamox? I'd really appreciate input from women who have struggled with this decision. How did you decide?
Thanks - Rose
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