Topic: removal of ovaries vs lupron

Mar 15, 2010 04:33 PM NativeMainer wrote:

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.  

Mar 22, 2010 09:18 PM lexislove wrote:

chasinghope,

I have been on Lupron with Tamox for 1.5 yrs. Many woman go this route too.

Apr 3, 2010 02:43 PM 1Lizzy wrote:

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...

May 7, 2010 10:06 PM momand2kids wrote:

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.

May 8, 2010 08:52 PM Cinnamon69 wrote:

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

May 8, 2010 11:29 PM lexislove wrote:

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.

May 9, 2010 12:08 PM, edited May 9, 2010 12:12 PM by lexislove

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.

May 25, 2010 09:38 PM Lauren3 wrote:

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???

Sep 18, 2010 09:04 AM lissyross wrote:

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.

Sep 20, 2010 08:56 PM, edited Sep 20, 2010 08:58 PM by 2z54

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

Sep 23, 2010 02:08 AM vegasbaby wrote:

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!!

Oct 25, 2010 10:16 AM marymoir wrote:

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.

Mar 1, 2012 10:48 AM KeyLimePie wrote:

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.

Oct 5, 2012 02:42 PM, edited Oct 5, 2012 02:47 PM by rgiuff

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.

Oct 21, 2012 09:15 PM rgiuff wrote:

Seeay, I'm not understanding your post at all.  My tumor was ER+ and I did tamoxifen, which blocks estrogen.