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Topic: removal of ovaries vs lupron

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: Mar 15, 2010 04:01PM

131mom wrote:

hello

curious if anyone considered just getting ovaries removed instead of taking lupron/tamixofin? 

 i am done with having kids.  just can't get over the idea of getting lupron shots every month for 5yrs and then what? what is the point? 

just want your thoughts, thanks.

Dx 8/24/2009, IDC, 6cm+, Stage I, Grade 3, 0/0 nodes, ER+/PR+, HER2-
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Nov 13, 2012 01:56PM - edited Nov 13, 2012 02:02PM by Eileen0417

This is an interesting discussion and I too am faced with making a decision about my ovaries. With my first diagnosis I was 42 and premenopausal. My period stopped after my second AC treatment. After chemo ended, I started taking tamoxifen because bloodwork showed I was premenopausal.

My period did not start up again but my onc said it was the tamoxifen that was stopping it. He did bloodwork a few more times and it continued to show premenopausal. I stopped taking tamoxifen last november and two months later my period started again. The first two were scary heavy and after that they were normal. Then I did not get a period last month and I started getting hot flashes. I was diagnosed with my second breast cancer a little over a month ago at 48.

My onc suggested "putting my ovaries to rest". So I'm assuming that means the monthly shots and an AI. This was upsetting to hear as I hadn't had that missed period yet and was premenopausal. I was just starting to feel normal again: I was off all cancer meds and I had my period again. It was really nice to feel like I did before the whole cancer thing happened.

Also I know that estrogen serves many functions in our bodies, protecting our hearts, keeping our arteries flexible, even stimulating the production of elastin and collagen in our skin-less wrinkles:) Hey it's something!

My second hormone sensitive tumor formed while I was taking tamoxifen so I know that the hormone treatments don't guarantee anything anyway.  My oncotype results will be in this week and I just know he will be advising to suppress ovaries anf an AI.  I just hate the idea of stopping a natural bodily process. Even if I am starting menopause, I don't even like the idea of using an AI.

Can anyone relate to my feelings?

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Nov 13, 2012 11:24PM voraciousreader wrote:

Eileen... I am sorry to hear about your recurrence. At 53, I was premenopausal at diagnosis and agreed to Lupron injections for two years. These last few months my menopausal status is being checked and I appear to be menopausal. I too, worry about the abrupt depletion of estrogen since heart disease runs rampant in my family. Since I menstruated longer than most women, the decision to do ovarian suppression was a little easier for me. I wonder at age 48 now, based on your family history, at what age would you normally approach menopause? Perhaps your body at 48 is closer to menopause and a few months or a year of O/S might not be as much of a further cardiac risk, since you already had an estrogen loss from your previous chemo. Furthermore, everyone varies when it comes to menopause symptoms. What's not to say that you are feeling well now with your regular periods and in a year, as you approach natural menopause, you feel awful again. Likewise, you might surprise yourself and move smoothly into menopause!

Deciding whether to do O/S is not an easy one. But with two premenopausal breast cancer diagnoses, I would carefully review my risks vs. benefits of treatment while considering quality of life. Good luck!

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Nov 14, 2012 12:34AM marymoir wrote:

Well, unfortunately I'm back confronting this issue again. I has done lupron and tamoxifen for 6 mos when I had to stop due to anxiety,depression and massive panic attacks (which I've never had prior to lupron). Onc said it was only giving me a few percentage points in terms of survival, so I stopped about a year ago.

Well, just found out I have mets to liver and bones, so now this issue is back on the table. Did a liver biopsy to make sure the mets have the same hormonal stats as my original tumor (apparently the mets sometimes change ER/PR status...who woulda thunk?). My naturopathic MD just did a bunch of tests to try to determine my hormone status, and onc is running some of his own tests to see if they can definitively determine if I'm finally truly menopausal. If they still can't say for sure that I'm "there," onc says he wants me to go back on Lupron so I can take an AI. When I asked why not an ooph, he pointed out that I had a bad psych reaction to estrogen deprivation with lupron, and thought it might be worse after an ooph (which, unlike lupron, couldn't be "undone" once those little suckers are gone). Of course, now that I'm Stage IV, it doesn't seem to make much difference-- I'd rather take meds for panic attacks if it increases my time here on the planet!).

After reading on this thread that the PDR for Lupron says it's contraindicated in folks with a history of breast cancer, my onc is gonna have some 'splainin to do to convince me that I shouldn't go the ooph route!

Mets to liver and multiple bones. Dx 11/19/2008, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 12/8/2008 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 1/6/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/25/2009 Breast Hormonal Therapy 6/4/2009 Dx 11/3/2012, IDC, Stage IV, Grade 3, mets Chemotherapy 11/15/2012 Doxil (doxorubicin) Hormonal Therapy 3/12/2013 Faslodex (fulvestrant) Chemotherapy 9/7/2013 Xeloda (capecitabine)
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Nov 14, 2012 01:37AM - edited Nov 14, 2012 01:46AM by LtotheK

Hi everyone,

I'm interested in this post as my period seems to have returned after 2 years and 2 months in chemopause.  That's me, always reinventing the wheel.

To the point about oophrectomy or suppression, the latest studies indicate that higher circulating estrogen is linked to a higher risk of recurrence (I believe just in ER+ patients).  I am currently on Tamoxifen, and I am SO grateful for the stuff.  Edited to add: I also know from some studies that Tamoxifen may have trouble blocking all estrogen in patients with higher circulating estrogen, it's mechanism is very complex.

These are extremely complicated choices. I already have osteoporosis in my spine thanks to a combination of granny and chemotherapy.  I'm doing better with exercise and Fosamax, but someone wrote in here that diet and lifestyle can combat the effects of ooph or Lupron.  That's not entirely true, a lot of things have to be weighed.

I've also looked at heart and bone health in relation to overall survival stats with women who had BC.  Thing is, osteoporosis is also a deadly disease (my granny died from it).  We always trade one problem for another, and it's important to assess the overall risk of return.  For me, if the ooph only raises my chances a few percentage points, I don't think it's worth the bone health issues.  This will also be a challenge for me in the future if I am switched to an AI.

Lupron is a widely used drug for ovarian suppression with women who've had cancer.  University of Chicago has a big study going on ovarian suppression + AI.  I don't think the jury is out on long term SEs right now, and it's important to remember our docs balance a lot of this information against our risk.  I used to defy my oncologist, and I still bring a lot of studies to her desk. It has been interesting, though--in the long run, she's been consistently correct about a lot of my questions.  Bring the studies to your appt.

Edited to add: Eileen, my heart goes out to you.  I think one of the scariest things about all these treatments is, they simply don't know which ones of us they are actually working for.  You are very young, make sure to get three, not two opinions on your next treatment.  We are thinking of you!!!

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Nov 14, 2012 05:43AM Eileen0417 wrote:

Since your oncotype was a 15, did you skip chemo? Have you experienced any hot flashes or other menopausal symptoms? 

I agree, the longer we have high levels of estrogen, probably the higher the risk. Actually my estrogen remained at premenopausal levels all through chemo and tamoxifen. Which eas surprising to my docs.

I'm glad that you felt at peace with your decision.

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Nov 14, 2012 05:56AM voraciousreader wrote:

I chose ovarian suppression rather than chemo for two reasons. Based on the Oncotype DX score of 15, the risks of chemo outweighed the benefit AND chemo is not as potent on Grade 1 tumors as it is on Grade 2 and 3 tumors. I also have Zometa infusions every 6 months for 3 years. The only issues that I had with the Lupron and Tamoxifen were gynocological but are manageable. Furthermore, some of my gyno issues preceded my diagnosis, so I can't entirely blame my treatment on my gyno woes. Just makes my treatment a little complicated.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Nov 17, 2012 01:02AM - edited Nov 17, 2012 01:09AM by rgiuff

Eileen, I can absolutely relate to your feelings.  I was only a Stage 1.  So because of that, I felt that the benefit to me of hormonal therapy was not huge.  Not sure what your current stage is, but sounds like it's early if they are doing oncotype.  From the start, I resented the idea that a natural hormone that is good for our bodies and quality of life, could be the culprit, and I didn't completely buy the idea.  I didn't really want to do tamoxifen, but did for 3 years just to play it safe and because it didn't take away my estrogen, just kept it away from the breast cancer cells.  I was perimenopausal and moved into being postmenopausal while I was on it.  But the whole time, I kept wishing that I could remain premenopausal, because I didn't like the changes that I was experiencing with menopause.  The drop in sex drive, the increased wrinkling of skin, the sleep disruption from hot flashes, and the aches and pains.  It was difficult to tell what effects were from natural changes and which were from tamoxifen.  After stopping it, some libido problems resolved a little, the vulval dryness along with all the vaginal discharge improved, and sleep has improved a lot.  Sleep was a big issue for me!

I started an AI about 4 months after stopping tamoxifen, mainly to appease my oncologist, but stopped after only 2 months due to big problems with getting to sleep, foot pain like I've never experienced before, and worries about it prematurely aging me internally, as well as externally.  Heart disease and strokes also run in my family.  So I decided that I was done and would keep whatever estrogen I was still making, thank you very much! 

I feel that something goes wrong with DNA to start the breast cancer process, don't think it's natural estrogen that causes the problem.  I feel that the issue is more of what is in our environment, the xenoestrogens that are sprayed onto our foods, and in so many household and cosmetic products, the chemicals in foods.  So I've chosen to eat mainly whole foods, organic as much as I can afford, now buy skin creams without parabens, and exercise regularly, as well as have cut down on alcohol.  And studies have been published showing that alcohol and exercise do impact the recurrence of breast cancer.  I would love to see studies comparing these natural factors against the pharmaceutical drugs.  If you want to go the pharmeceutical route, there are other drugs that work similarly to tamoxifen, that have been studied and approved for advanced breast cancers, but I have seen on these boards that more and more premenopausal early stage patients are being prescribed them.  Fareston is one of them, and I can't remember the names of others.  You could ask your Onc about them.

RoseG Dx 4/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2- Dx 4/6/2008, IDC, Left, <1cm, Stage IB, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/20/2008 Lumpectomy: Left Radiation Therapy 8/20/2008 Breast
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Aug 15, 2018 11:13PM Ashirgir wrote:

and how are you doing now? Did you take the ovaries out? Or chose the Lupron route

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Aug 16, 2018 03:41AM exercise_guru wrote:

in my case there is a close family history of ovarian cancer and the palb2 gene. I would not have removed my ovaries otherwise. The surgical menopause causes a lot of problems I could have avoided with simply Lupron and arimidex. Also the arimidex was so hard on my bones I went back to tamoxifen anyway.

Age 42 05/15/2015 PALB2 mutation, DBL Breast Cancer Type 1A Grade 3 ER+PR+(right 1.3cm,.5cm) HERr+(left1.6 cm), 06/26/2015 BMX with TE 8/27/15 Chemotherapy TCH 12/30/2015 TAH/BSO/Reconstruction 1/29/16 Arimidex 3/1/16 Femara 5/6/16 Tamoxifen
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Oct 3, 2019 08:03PM Brilee76 wrote:

I've decided to go the oophrectomy route. I'm 43 and a grandma. I've been on Lupron for almost 4 months and have read about the SEs with Lupron. I've always been leary of taking anything for an extended period of time due to SEs. I don't have the known mutation on BRCA2 but my mother and I do have an unknown mutation on the BRCA2 gene and we've both had breast cancer. Since the known mutation increases your risk for ovarian cancer and I was going to have to have the LEEP procedure done anyway I felt the hysterectomy with oophrectomy just made sense. I'm currently undergoing chemo so my oophrectomy has been postponed and the Lupron shots continue. I took Tamoxifen for a short time before my mastectomies. My oncologist will be starting me on Letrozole when it's safe to do so as she feels there are better results with Letrozole than Tamoxifen. She says I have to be postmenopausal to take the Letrozole.

~Bridget (BRCA2, 7/1/19-Lupron, 12/30/19-Zometa) Dx 5/16/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Hormonal Therapy 7/1/2019 Hormonal Therapy 7/1/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/6/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 9/18/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/16/2019 Femara (letrozole) Hormonal Therapy 12/30/2019 Surgery 1/20/2020 Prophylactic ovary removal
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May 9, 2020 04:52AM sdavison wrote:

Hello,


I am struggling with decison to continue lupron and letrozole or have my ovaries removed. I am 38 and too wonder will my ovaries wake back up after 5 years. Is it worth the expense of the shot for 3 more years. Or should I put myself into permanent menopause at 38?

I would really love to hear what decision you made.


Thank you

Sarah

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May 13, 2020 11:21AM jmren wrote:

Hi Sarah - My situation is a bit different, as I was diagnosed at 43. My ovaries tried to restart, but permanent menopause was always the goal since I was double positive they didn't want that to happen. I did the ovarian suppression for two years. When I was presented with the choice of the oophrectomy I went ahead because:

1 - money. The surgery was covered completely (I had it at the end of the calendar year), but the suppression meds were maxing out my out of pocket each year and financially three more years would have been really tough.

2 - pain from injections. I would sometimes have substantial bruising and pain with the injections so it was nice be be done with those.

3 - reduced number of doctor visits and blood work. Again, this was mostly financial and not a huge issue but the thought of cutting my doctor visits per year in half was a nice thought too.

4 - had already decided on no children. Since I had to make the decision on not having kids at the beginning of my treatment two/three years earlier, the oophrectomy wasn't going to change that outcome for me.

The procedure went really well and I needed less than a week off work for recovery. I haven't regretted the decision once. I will share that I was surprised at how emotional I got around the time of the surgery...I think it was part of the grieving process (again) and just a strange loss related to womanhood or something. I hope that helps you in your processing.

Blessings - JM

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