removal of ovaries vs lupron
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.
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HI there.
My questions were the same...I decided to remove them. Im 32, done with kids and there is no research to tell me how long to stay on the Lupron for. Do I take Lupron shots every 3 months for 15 yrs or more? Come on now...really.
I think age has to do with your decision too. There are pros and cons with removing the ovaries. For instance removal is permanent, there is no going back. Being thrown into menopause right away instead of gradually. Increase risk of heart disease and bone loss. These can be prevented through lifestyle though.
Its a hard decision...do whats right for you.
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I am going the lupron route. I have had lurpon shots every 4 months for 2 years, and will be tested for menopausal status at my next appointment. Lupron usually causes permanent menopause in most women, unless very young, in about 2 years according to my Med Onc. So Lupron isn't necessarily a 5 year or longer thing.
I can see where ovarian removal could be a more acceptable choice than shots every few months. If I wasn't borderline menopausal when I was diagnosed I would have given that route a lot of consideration.
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Hi ladies,
I'm doing Lupron and Tamoxifen, it doesn't look like many are going this route, anyone know why?
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chasinghope,
I have been on Lupron with Tamox for 1.5 yrs. Many woman go this route too.
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I took zolodex (same as lupron) for 1.5 yrs with tamox. I read a good study (don't have the reference) that siad lupron for 2 yrs, did help decrease risk of recurrance. The study went for only 2 years and apparently there isn't alot of info on long-term side effects or recurarrance benefits after 2 years.
For me after the 1.5yrs, I did have an ooph. - It was a big mistake in my case. My risk of recurrance was low and I just think I went overboard, for fear of recurrance.
Just remember, once those ovaries are gone, you can never have them back! They produce estrogen, progestrone and testosterone. the loss of all 3 hormones effects a women systemicly (spell?), everything from her mood, memory, heart and bone health, joints, vaginal dryness and sex life. Not a fun ride. Even if you are done having children, the ovaries are important for your overall health. - Quality of life are important too.
The nice thing about lupron is you should get a nice benefit for 2 yrs and then you can decide if you want to go further and pursue oopherectomy.
Good luck,
Julie
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Hi Julie, I am 48 and have regular periods. I am tall and small boned so that already puts me in for osteo... I appreciated your info on the ooph. I was contemplating that route thinking it was going to be friendlier going into menopause. It appears as it may not. So, can you tell me how old you are and how the meds made you feel. I meet with onco this week and would like to have questions for him. Knowing me, I'll get mental block...
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I am doing this as well, but my oncologist told me I should consider getting the ovaries removed, otherwise I have to keep getting the Lupron shots once a month. I am trying to weigh the advantages and disadvantages to both, but haven't been able to find too much information.
Is there any point in having them removed once you have been on Lupron for 2 years if you are in menopause anyway? Do the ovaries still produce some estrogen after menopause, so removal is suggested?
I will get further details from my doc next time I see her, but any info you can provide would be appreciated.
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Hi
I have been doing lupron with femara for a year-- I was pre-menopausal at dx but could not take tamoxifen. In the beginning, I just wanted to take my ovaries out---- but the oncs told me that lupron and the femara was just as effective and that I could always take my ovaries out later.
You can get lupron in one month or 3 months shots- I am still doing once a month, but would consider every 3 months--- does anyone have any experience with that?
I too have asked the question- what happens once the 5 years is up? do my periods come back or am I in menopause for sure---
The shots are not a problem- I just schedule it once a month- takes a few minutes on my way to work. I do find that I am a little cranky for a few days afterwards.....
I am now of the mind that less is more-- I let them take the lump out of my breasts, but that is all they are getting, at least for now.
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I've been doing Lupron since June 2008. I do the every 3 month shot. It's ok. I like only going to the cancer centre every 3 months instead of every.
I do have se's but I've linked it to the Tamox.
momand2kids,
Are you having your estrogen levels tested monthly to make sure that you are in full menopause? I hope you are...because the AI's will only work if you are fully menopausal. Even though we are supressing our ovaries, have had no period doesn't gurantee we are fully in menopause. This is very...very important. If you are NOT in full menopause...the AI's can actually stimulate the ovaries. So you actually doing more harm than good.
I was told this by my onc, when I tested as a poor metabolizer via the cyp2d6 test. I was ready to throw the Tamox away and start up Femara. I actually DID do Femara for 2 weeks...then my onc told me that it was safer for me to do the Tamox than the AI untill I have my ooph (June 3rd). I asked about testing my estrogen levels, I think I remember him saying there was 2 hormones that need to be seen as menopausal, but apparantly in Canada...it's not available.
There is literature on this on the net if you want to google yourself.
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Hello Ladies
I just had my ovaries removed and will start Exemestane in June. I signed up for the SOFT clinical trial and luckily got the arm of the trial I wanted: suppression of the ovaries and Exemestane. This drug has less side effects than Tamoxifen but can only be used on postmenopausal women. I just wanted all the surgeries and difficult decisions behind me and I feel as long as take care of my health I can manage the issues that come with early menopause. Good luck with making your decision.
Cinnamon
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Lex
I don't have monthly checks--- my onc has never recommended them-- I have the lupron and take the femara--I am pretty sure it knocked me right into menopause-well, actually the chemo did..... I will ask her at the next appt. I know that the AI's require one to be in menopause--- we had lots of conversations about that at the time of treatment decisions. I will check with her-- but I got two opinions on treatment from excellent hospitals/docs- and they all agreed--AI's with lupron-- but there was never any mention of monthly testing of my menopausal state.... I will definitely follow up--
Had my first MRI today--- no results, but I got through it with no anxiety!!! 18 months out.....
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mom,
Congrats on the NO anxiety.
I'm sure that you are fine with your menopausal status. My period stopped after my 3rd AC, that was Dec 2007.......it did not come back once I finished chemo in Feb 2008. I started Lupron in June 2008.
Like I said....I only found out about this whole AI and Lupron menopause thingy...because I casually mentioned to my onc that I seem to have mild cramping right before I'm due for my Lupron injections. Like my ovaries were wanting to wake up. Thats when my onc explained the whole thing.
Good to for you to follow up...better safe than sorry right?
Be well.
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lex
this is a good topic-because I could not take tamoxifen, and because you need to be in menopause for the AI's, I asked the question-- "well, if estrogen is the issue, shouldn't lupron be enough?"- the answer was that lupron did indeed shut down most of the operation and the AI captures the rest because our bodies make estrogen in other places (who knew?)
I was also curious to know what would happen at the 5 year mark when hopefully all these drugs will be out of mylife-- will my ovaries start back up? Of course, I will be older and technically likely to be in menopause anyway-- but no one really knows
My periods stopped after my 2cond AC treatment in Feb 09 and I started the lupron in June 09--femara in July.....
I don't get cramping monthly- but I still have chocolate cravings--I get them for the two days after the lupron shot--- very strange....
Do they do a blood test every month for you? I am not even sure how to check estrogen levels. I only know that I feel the loss of it so acutely that I am convinced there is nothing left in there. But I would love to know how they check.
So, no anxiety for the scan but I always forget that I have to wait for the results!
thanks
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mom,
Well...theoretically, I can't take Tamox either (poor metabolizer) but there is so..so much contoversy with this test. Especially with pre menopausal woman because Tamox is THE only thing we can take. My onc explained to me that a poor metabolizer does not mean NO metabolzer. It just means it takes longer for the Tamox to do it's thing and how much I'm actually metabolizing? We don't know.
So. What does that mean for me?
Well, I don't want to be my own trial and "see what happens". Forget it. So, since I'm only 32 and still highly premenopausal, I decided to get the ovaries out now, than later. I asked my onc what I was suppose to do. Take the Lupron untill I hit natural menopause? Pfffttt....ok. That could be another 15 yrs! Plus, my Lupron is only covered for the first 3 yrs since finishing treatment. Why? Because studies to date only have this info, overall survival with 3 yrs of Lupron vs nothing. The SOFT trial will answer all these questions for us pre meno woman.The SOFT trial will be answering for 5 yrs and if Lupron with Tamox is better than Lupron with an AI. Or Tamox is just fine.
I asked my onc straight out, "what do you think I should do?" My onc said very honestly, that with us pre meno woman they ,the reasearchers,just don't know enough right now. AND....any news regarding the SOFT trial will be years away.
mom.....I can't wait years and take a gamble. I have to do what I know now. Most of it, is my own research, other womans stories I've read on various B.C. boards and my own gut feeling.
So thats me.
As for testing estrogen levels...it's a blood test. I do not get my estrogen levels checked, but I don't need to because I'm on Tamox still. Even though I'm on the Lupron, if I did test and it said that I wasn't fully in menopause, thats ok......being on the Tamox. NOT, the AI.
Tamox and Ai's work differently. Tamox binds on to the estrogen in our bodies, where an AI....stops to help the production.
Edit: Our bodies also produce estrogen in our adrenal glands and excess fat. Thats why they say a reducing excess weight and exercising to keep off the pounds will help lower our chances of developing BC or getting a recurrence.
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Hi,
I asked the same question. I'm scared of the Tamoxifen, to many side effects. I'm going to tell my Onc on Thursday, that I rather get my overies out and see what he has to say. All though we kinda talked on this subject last visit and he wants me to take the Tamoxifen. I'ts my body so I'm going to do whats best for me.
Good Luck with your decision.
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I'm doing Tamox and Trelstar (which is exactly like Lupron). I hate the Trelstar though. Anyone know why I have to get it every month and some of you are only going every 3 or 4???
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Well, after discussing this with my oncologist and an ob/gyn surgeon, I have decided to have my ovaries removed. I am pre-menopausal, been on tamoxifen for about 8 months and lupron for about 6 months. My antigen levels really haven't decreased as my onc would have liked, the primary tumor hasn't gotten any smaller, and that is what made me decide to go forward with the ovary removal. Both doctors told me that the lupron shots are not as effective in stopping estrogen production as the oopherectomy will be, and since I'm not concerned about fertility anymore, I felt this was the best route. I have really had very few side effects from the drugs, but they are not working as well as we would like, so this is the next step. As I have already hit menopause from the lupron, I'm not too concerned about that, I know it may have other effects, but I'll deal with that if it helps to reduce the tumor and keeps me going longer.
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I am 40 yrs old and I am facing the lupron vs taking the ovaries out dilema as well. I am stage 1c, and had a double mastectomy. My lymph nodes are clear and BRAC neg, ER/PR+, Her2 neg. My concern is life after estrogen removal. I am mostly curious about how this effects ones sex life and moods. Any advice from those that have done either?
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I marvel at these women who have been successfully taking Lupron for years. I'm 56 now, but when I was about 35 I had to take Lupron after having one ovary removed because of severe endometriosis. The ovary removal wasn't so bad, but the Lupron injections made me feel like I thought an 80 year old woman must've felt; every bone and muscle ached! I was supposed to do Lupron for 6 months - it was still experimental and cost a fortune back then. Anyway, I only tolerated about 3 or 4 months and gave up. My periods came back and in my mid 40s I started an early menopause (only had 1 half functioning ovary by then, anyway), and it was much easier to get into "gradual" menopause than the Lupron injections. Now that I'm TN, the estrogen removal isn't that much of a concern.
I guess we're all different, but I for one, would elect ovary removal over Lupron. But, maybe they've made it more tolerable now, too. Good luck!
Sue
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Robin, having such an early stage cancer, I'm wondering why you can't just take tamoxifen. Why is your doctor recommending removing or suppressing ovaries? When you don't have functioning ovaries, you lose not only most of your estrogen production, but a great amt.of your testosterone production as well. This is the hormone responsible for libido and enjoying our sex lives. I have not done this. It was never suggested for me by any of the Oncs or other doctors that I saw, but know women who have removed ovaries and they do complain about vaginal dryness and some loss of libido and sensation. They all had more advanced stages of BC, so this is why their docs recommended this procedure. So I'm always surprised to hear of women with early stage cancers who have this procedure recommended to them. I would read up on the long term effects before doing anything as drastic as removing ovaries.
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Hi Ladies,
After reading all the responses on here, I had to share my story in regards to the Lupron/Tamox route. I was diagnosed in 2006 at 35 years old. I did lump, chemo x 8, 37 rads. My periods stopped as soon as I finished my second chemo. After radiation was completed, my onc put me on Tamox, as well as monthly Lupron shots. I did that exact regimen for almost 3 years. Still no periods of course (which was kind of nice!). My onc felt pretty certain that I had had enough of the Lupron shots so we discontinued them but kept me on the Tamox to see if my periods would come back. They never did. She tested all my hormone levels last fall. It showed I was menopausal. She was happy with this news and switched me to Femara. Can you say hot flash hell? Fast forward 9 months to July of this year and what do you know??? My periods came back. Had my hormone levels checked again, and sure enough. Producing estrogen again. My onc said it's fairly uncommon for that to happen after more than 4 years of amenorrhea. So back to Tamoxifen I go. She wants me to get to the full 5 years of hormone therapy, which would be next October. After that, she wants me to do an ooph. I kind of feel like (for me) if they are going in to do an ooph, why not just take the whole kit and caboodle? So that's my story. The tamox and Lupron worked well for me. If I had to do it over again, that is exactly what I would do. The SE's weren't too bad. Yeah, I had the aches and pains and absurd hot flashes, but nothing that prevented me from having a great QOL. Good luck to all of you with your decisions!!
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I am so glad I found this forum, I have been looking for at least 2 weeks. I too, like Lexi was told I am a poor metabolizer of Tamoxifen. When I got the news, I was so frightened and instantly thought of recurrence. I had the opportunity to meet with a gyn onc who suggested the ooph, however, I really feel that at least trying the Lupron + Tamoxifen may be the best in that at least I can try and if it does not work, I have the alternative for the surgery. Another reason I met with the gyn onc is because in September, my cycle returned and I bled for at least 2.5 weeks with the last few days being horrific, in fact, I was unable to work because of it. I am meeting with my new med onc on Wednesday and will discuss this with her. I am aware that there are some significant side effects with both choices, but right now, I really would like to work on gaining some strength and losing this chemo weight.
I so appreciate each of your sharing
By the way, I am 36 years old and am finished with children, as I have two sons: 18 & 13.0 -
Interesting seeing everyone's POV on this. My last period was during my 1st chemo Tx, but before making the hormonal decision my onc told me to get my OB/GYN to advise him as to my menopausal status b/c the tests he had run suggested I was already "there." The OB tested it...higher levels of whatever the 2 hormones are that confirm menopause than the onc's test showed. OB told me that it's not uncommon to get conflicting levels depending on where you would be in your "cycle" (if you were still having them) when the tests were run. He has had patients whom he thought were menopausal after chemo based on one blood test, but who later tests showed pre-menopausal hormone levels.
Based on this, my onc has me on Lupron & Tamox. When I asked for how long, he said "a few years
." Don't really like the SEs such as back and hip pain (leading to much scanxiety to rule out mets), diminished cognition & memory problems (chemo brain had been getting better before we added the Lupron), but the only "menopausal" side effects I've had are the occasional hot flashes which have been tolerable. Also concerned because I've seen on other threads that it's not recommended to take Lupron for > 6 months, and I've already been on it for almost a year. Going to ask my onc about it.0 -
The two tests are LH (leutenizing hormone) and FSH (follicle stimulating hormone). High levels indicate menopause.
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Lupron is really dangerous. Per the Physicians Desk Reference, it should NOT be prescribed for women with known or suspected carcinoma of the breast. Point that out to your oncologist. Lupron is not FDA approved for the treatment of cancer in women! There is much anecdotal evidence that Lupron actually CAUSES cancer - because it causes an estrogen surge before it lowers your estrogen levels. Google Lupron IVF cancer - and you'll find many women who got breast cancer right after taking Lupron for IVF. So it's absolute madness to take Lupron for breast cancer. The drug causes osteoporosis, chronic bone pain, memory loss, tooth loss, vaginal atrophy, heart damage, vision loss, fibromyalgia, and many other injuries which are permanent. Lupron can only be taken for six months per the warning label and will NOT put you into permanent menopause. So the risks of Lupron do not justify any potential benefits. Please Google Lupron Victims or Lupron Disabled and read the horror stories.
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I have been on Lupron and Exemestane since January 2012. I was diagnosed IDC May 2011, lumpectomy for stage I, 0/3 nodes, ER/PR+ Her2 - , Oncotype score 22. Had 1TC and 5 CMF (had reaction to taxetere) because path report showed some lyphatic-vascular invasion, then 37 external radiation tx. First month on Lupron/Exemestane had terrrible depression, days of crying non-stop, hot flashes, joint pain. Started taking Vitamin D and after one month depression was much better. Also had problems with legs swelling and actually had ultrasound done to r/o DVT which was negative. Joint pain seemed worse after maintaining one position for long period of time (sitting in car for trip, hands cramped after an hour of driving). Moving/ exercise seemed to help joint stiffness greatly. I was months short of my 50th birthday when diagnosed and still with regular periods. Periods stopped after first chemo and have not returned. I am considering oopherectomy so that I don't have to schedule shots every 28 days but I'm not a big fan of surgery. I am not sure how long I would have to be on lupron considering my age. My sister is 58 and stopped periods completely about 55. Had consultation w/ Gyn yesterday who is also suggesting hysterectomy though I never really had any problems with periods. Just not sure how to proceed. Think I will consult with onc again before making any decisions. It is hard to find information on the consequences of oopherectomy for perimenopausal women.
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Irmodm, not understanding why you would need to remove ovaries. I was premenopausal at diagnosis. The only thing ever suggested was tamoxifen after I had my lumpectomy followed by radiation. I never had any type of ovarian suppression, nor did I have any chemo. When I commented to my Onc about how many women seemed to be getting oophorectomies to treat breast cancer, he stated that that was definitely something he would not suggest for me.
I did become postmenopausal during the 3 years I was on tamoxifen. You've done chemo already, which has a high probability of having shut down your ovaries anyway. Even if your periods were to come back, could you do tamoxifen alone without the lupron, or is there a reason why you can't take it?
Unless there is a risk for ovarian cancer, removing your ovaries seems pretty aggressive to me. Your GYN does earn a living doing these types of surgeries, just a thought.
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rgiuff - if your tumor wasn't ER+, then you wouldn't need to find a way to suppress your estrogen.
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Seeay, I'm not understanding your post at all. My tumor was ER+ and I did tamoxifen, which blocks estrogen.
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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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