Bilateral Oophorectomy to halt cancer growth?

Mamalala333

I have not posted often, but I find myself in quite a predicament. I was diagnosed with stage 4 cancer in March and quickly started A/C chemo. My cancer is highly estrogen positive, just slightly progesterone positive. After 3 rounds of chemo, I got another CT scan and my oncologist informed me that the chemo hadn't been shrinking my cancer. Infact, the tumors have been growing! Especially those in my lungs. I have a 4cm breast tumor with one affected lymph node (that they know of), some mets to my shoulder bones and multiple small tumors in my lungs.

My oncologist suggested abandoning chemo and hitting me from the hormone side instead. I am only 37 and far from menopause, so he suggested getting my ovaries removed and then treating me with the (more effective?) prescriptions for menopausal women.

I was totally on board, but then started researching some of the side effects of bilateral Oophorectomy and got scared. Heart disease being the main worry.

Anyone have experience with this? I haven't really had time to ask for a second opinion.

Thanks!

Laura

Heidihill

I'm sorry you're having to deal with this at your age. My options were different from yours as I was already about to hit menopause upon diagnosis and went into chemopause. It is possible for you to suppress your ovaries temporarily, which would still allow you to take antiestrogen drugs...and give you time to think about an oophorectomy. Someone will surely come along with more experience on this than me. In the meantime here is a link with some additional information.

http://www.breastcancer.org/treatment/hormonal/ova...

Longtermsurvivor

Hi Mamalala,

I thought of having my ovaries surgically removed when I was diagnosed with advanced ER+ breast cancer at age 35 - still premenopausal.

At that time aromatase inhibitors and Faslodex weren't around, so surgery would have been just to reduce circulating estrogen, not to make those other drugs doable.

I never did decide to do it. Later when I had surgery for possible ovarian cancer (a different long story), I actually decided to keep a scrap of other ovary and wait for natural menopause.

But, by then the advanced breast cancer had become ER-, so losing all my hormones didn't seem like a survival advantage.

Mamalala, one of my many rules of thumb for deciding on treatment options is, "even if there are long-term effects from this treatment, am I willing to risk them given that without the treatment I might not live that long?"

If uncontrolled, rapidly progressing breast cancer is likely to kill you sooner, then maybe those long-term effects aren't so important. And feeling better right now is more important.

If I were in your shoes, I'd ask about chemical ovarian suppression by Lupron and use of aromatase inhibitors now, Faslodex later.

If the chemical menopause isn't too bad, maybe you'll want to have your ovaries surgically removed later.

It's a lot to think about and I hope others respond!

sending warm, healing regards, Stephanie now age 60

Becs511

I had a bilateral ooph last June, a month after my 34th birthday. I'm single and was unsure about wanting kids in the first place, so it was a pretty easy choice for me.

It was done laproscopicly and did not require any nights in the hospital. In and out. The recovery was also very quick. I was very sore the next day, but was out and about 2 days afterwards.

So far the only SEs I've had are the standard menopausal ones, hot flashes and night sweats. I have absolutely no regrets about doing it! Plus I never have to worry about the timing of periods while on vacations

pajim

Mamalala, if your cancer is ER+, then what you're experiencing (with the chemo) is very normal. Your cancer grows by feeding off estrogen. So to keep it from growing you need to block the estrogen in your body. I agree with your MD on this. It's been shown that hormonal treatment does a lot more for ER+ women than chemotherapy.

Having your ovaries out is one way to block the estrogen. However you can instead "ablate" your ovaries with a shot -- Lupron or Zoladex. They do the same thing. You don't have to have an operation. The thing about the shots is that if you truly don't want to shut down your ovaries anymore it is reversible. (The operation is easy though).

The side-effects? Vary from woman to woman. You will become menopausal in a hurry. That means hot flashes, vaginal dryness, dry skin, problems with the bones, etc. All the same things your Mom has. How much and how hard depends totally on the person (and luck of the draw). Heart disease is more of a worry on A/C than it is from menopause.

I'm sorry to welcome you to this club. You really should go for a second opinion to an NCI Cancer Center out west. The Hutch if you can get there.

Goodie16

I'm scheduled for my ooph on June15th. I've been doing Lupron injections since January. In March my onc decided my levels weren't dropping quickly enough for him and anticipated I'd be on Lupron longer than he would like, so he recommended the ooph. I've continued with Lupron injections until my surgery. Once I have my surgery, I'll start on an AI.

Have you tried tamoxifen at all yet? It's typically given to premenopausal women until they reach menopause (either surgically, chemically, or naturally) and then they are switched to an AI. I had trouble tolerating the SEs of tamoxifen, but many women do fine on it.

Your doctor might be suggesting an ooph instead of Lupron/Zoladex injections due to your young age. I'm 52 and my onc agreed to Lupron because he didn't think I was far out from natural menopause. He said he doesn't like his patients on Lupron long term because of SEs from it.

Best of luck to you as you navigate your course of treatment.

JFL

I had mine out at 38, when I was diagnosed with mets. I was pregnant at the time with my first baby and had them removed during C-Section. It was an easy decision since I was fortunate to have the one baby on the way. However, if I had yet to have kids, it would have been a harder decision. Also, my mets werereally aggressive, developed quickly and had filled my liver and bones. I wanted my levels to drop quickly from the elevated levels of hormones I had during pregnancy. If you are still unsure, ask about and consider Lupron or Zoladex to shut down your ovaries and allow you to try the postmenopausal treatments. Since those are not permanent, it is something to consider. Also, my doctor put me on two hormone therapies at the same time to aggressively block estrogen via different methods - Aromasin and Faslodex. Good luck sorting out all your options.

zarovka

Laura - can you post your diagnosis and treatment in your profile. You also have to make it public. Two steps.

It's hard to comment without that information.

That said, I am supressing my ovaries with lupron and I take letrozol. My estrogen levels are non-detectable and the tumors are receeding. It seems to me you don't have to remove your ovaries to supress estrogen. You can. But you do have a choice.

Hormonal therapies are effective and often the first line treatment. I'm even a bit surprised you got chemo first. This is why I am curious to see your diagnosis. In any case, hormonal supression is a good treatment option whether you supress the ovaries or take them out. You may do very well.

>Z<

indenial

I am 33 and having both ovaries out next week. Although I am not "done" having children, I always knew this was a possibility since my early-stage diagnosis, so I've had 3 years to come to terms with it (and will happily adopt someday if I live long enough to!) In your case it seems a lot to process so suddenly, so an ovarian suppression shot would allow you to start on AIs and you can always have an oophorectomy later, when you're ready. According to my onc, since I'm highly ER+, we need to permanently shut down the ovaries. It will never be OK for me to have circulating estrogen (unless someone develops a cure for cancer!) so I didn't see the point in doing shots, I'm healthy enough to tolerate surgery now and this feels like a good time. Plus I already failed tamoxifen. Heart disease is a concern, as is bone loss, but cancer is more likely to kill me first. Those are the things that factored into my decision but I know it's a hard choice and really sucks that you have to make it.

Anonymous

I had mine out a little over 3 years ago, and I have not regretted it. I was able to then go straight to an AI. Lupron can suppress, but as my MO said, the only way to be 100% sure that the ovaries aren't producing anything is to have them out.

ShetlandPony

Welcome, Mamalala. I think you will find lots of information and support here.

Ovarian suppression/ooph plus an aromatase inhibitor is considered more aggressive treatment, but ovarian suppression/ooph plus tamoxifen might be an option if the side effects are too hard with the aromatase inhibitor. With high ER+ stage iv at this age, I would try option one first. Ask about taking letrozole and adding Ibrance at some point. Another combination is aromasin plus afinitor, but I think those side effects are typically harder.

You really need some good discussion with some expert oncologists who can individualize this for you. I agree with pajim that your second opinion should be at an NCI (National Cancer Institute) cancer center. See below for the one in your state. Also, there are several NCI comprehensive cancer centers in the Pacific Region.

Knight Cancer Institute
Oregon Health and Science University
Portland, Oregon

You might ask about a PET-CT scan to get a more accurate look at what is going on.

Hormonal therapy can be very effective, but if the doctors say a fast-working chemo is needed, ask about chemo sensitivity testing.

Thinking along the same lines as longtermsurvivor above, cancer treatment always involves weighing risks vs. benefits. Heart disease is scary to think about, but it will not necessarily happen, and you need to do something about the cancer asap, right? Ask the doctor if you personally have a greater risk from cancer or from heart disease at this point.

phrogger78

I am 37, was diagnosed stage 4 from the start, ER/PR + her2 - and my first line of treatment is Ibrance/letrozole and an oophorectomy. I wanted to get my ovaries out ASAP as my cancer is highly hormone receptive. I know there are risks such as increased chances of heart disease, but honestly, if the cancer grows, my heart won't matter anyway. I had the surgery 2 months ago and I feel good. I have some aches and pains associated with menopause, but its nothing I can't manage. I am responding quite well to the medication, so I am glad i went this route and it is working for me. What ever you end up deciding, I hope it works out very well for you as well.

Mamalala333

I am having a hard time making my information public and correct. I think it should be showing at least some of it now. I was at my first chemo appointment in March when my oncologist reviewed a CT scan where he thought I MAY have metastatic cancer. Because we weren't sure (and I was there for chemo!!!) the doctor said we should just go ahead with 4 rounds of A/C and then do hormone treatment. I was pretty insistent on chemo. I thought it would shrink things, then the hormone treatment would keep them small. That was my thinking, and the doc agreed. Before he suspected I was stage 4, he was thinking 4 rounds of A/C followed by 12 of Taxol. So he did abandon the Taxol right away.

After chemo round 3, I got another CT scan that showed none of my tumors had shrunk. I had one chemo round left, but doc saw no reason to finish chemo, and decided to go to hormone treatment ASAP. This has all been in just the last few days.

We are now deciding whether to go straight to bilateral Oophorectomy or try pills first. I have 5 children and husband has a vasectomy so not having more kids is not a problem. I am thinking I will get the surgery eventually, so maybe I shouldn't put it off?

I think I'm just kind of new to this whole thing and am still in shock that my chemo didn't work and my tumors are growing!

NineTwelve

Hi, Mamalala. I understand your shock, and I concur with the others' responses. I was stage iv at diagnosis, and my onc told me that meant surgery and chemo were off the plate, for now. He put me on Zoladex (aka Lupron) shots and Tamoxifen. My tumors immediately shrank, by a lot, and they are currently not growing, according to the last PET scan.

The shots and Tamoxifen are working and I'm not having a problem tolerating the side effects (some heat flushes, a little joint pain.) Shots are easier to face than a surgery, but they are expensive, and if your insurance isn't wanting to cover them, then the surgery is the better decision.

pajim

Mamalala, you are still in what I call the "shock and awe" period which occurs after a mets diagnosis. Fear, confusion, etc. are all perfectly normal. Not to mention that you're dealing with the side-effects of A/C.

From your explanation of what happened I now feel better about your doc. If he thought you didn't have mets, then attacking the cancer with ACT was an excellent idea. Now that the cat is "out of the bag" so to speak, you are better off with hormonal treatment.

Two things -- one is that you shouldn't be scared that your cancer won't respond. Each woman has their own "magic bullet". What works to shrink their cancer may not shrink yours, and vice-versa. You are very likely to respond to tamoxifen or letrozole/Ibrance.

Second thing -- the operation. You can have it or not. You don't have to decide now. You're still wrapping your mind around this whole thing. If you don't want to head to the OR right away, take the shots for a bit until you are ready. I took those shots for 4 years before I went to the OR. The downside of the shots is having to go into the cancer center for them. The BSO (Ooph), is quick -- you are in and out in less than a day.

Zillsnot4me

I agree you are still wrapping your head around all this. It won't hurt to wait on the sx and get the shots.

I had ac even though I was stiv from the get go. I was 45 and in chemopause. Tamoxifen did good for almost two years. SEs weren't bad. But I've had progression and hind sight is 20/20. I had my ovaries removed last fall. Wish I had them removed sooner. I felt great after my sx and was dancing and singing in the kitchen most mornings.

Hot flashes and dry skin are the two biggies. I walk most days, take calcium and eat prunes to protect my bones. Have added xgeva when I got bone mets. My heart seems good.

Good luck. And keep in touch.

Bosco2602

I just had my first lupron shot 2 weeks ago. No SE so far.i personally will feel safer when they are out!! But my Onc did advise me that an Ooph needs to be done. She said if and when I need to get into clinical trials most will not accept people who are not in menapause. Being chemically induced menapause doesn't count and you would be denied entrance to the trial.

Mzmerz

It was easy for me to decide. I was 41 at the time. But since Tamox can increase the risk of uterine cancer, I didn't want to have to worry about that, too. I had also taken fertility pills to get pregnant, and that increased the risk of ovarian cancer. So it was easy for me to say, take it all out. Plus no periods, no monthly shots, and best of all, no more paps!

Good luck with your decision.

Amy

Iwillwinthisbattle

I was a bit older than you, but I had the ooph several years ago with very minimal side effects. There was a brief time with minor hot flashes, but I really could not complain. Today I am 5 years out NED. I hope this helps