Tamoxifen to lupron to oophorectomy

Mag1913

My body did not handle tamoxifen very well...foggy brain and really bad joint pain, in my hip and back to the point I use to walk 4 miles before this and couldn't make in around my block without pain and discomfort. MO did a three week off trial, I felt normal again...my favorite statement was "I feel like me again". Well needless to say with my tumor being 100% estrogen fed they won't let me not do anything. So here I am on my second shot of lupron, waiting for my surgery date for an oophorectomy!

My question is has anyone opted for an oophorectomy instead of staying on lupron? How have the menopausal side effect been since your oophorectomy? Did you have a long recovery time?

I'm 45 and beyond planning any more childreni.

Thank you in advance for any help you can give to maybe ease my mind that I'm making the right choice!

mkinoly

Hi Mag. I had an oophorectomy to avoid pills and shots. This was in October of 2015, so about 10 months so far of being thrust into menopause.

The procedure itself was done laproscopically, so it wasn't anything major, just an out-patient surgery. There was some pain occasionally for several days afterward, but nothing I needed medication for.

As for menopause... I don't like it! lol The thing I've noticed the most is lack of libido. Like it's done gone, never to be found. I get hot flashes a few times a day, nothing too awful. I figure it's all probably not worse, and likely better, than the side-effects of medications, and at 49 I was heading to menopause in a couple years anyway. You mentioned the Lupron making you not feel like yourself--I have not noticed that for me with the ovary removal.

I definitely do not regret my choice, though of course I'm angry and hate that I had to even make a choice. Hope my experience helps you in some way.

daisylover

Mag,

I had intense hot flashes, swelling in my legs, and headaches with my monthly lupron shots... so, I was very happy to proceed with the ooph. I definitely had less intense hot flashes after the ooph. I have always felt like the decision to remove my ovaries was a good one. However, I am sure like most things on this journey, we all respond a little differently? The surgery was not difficult for me. I took tylenol for a few days. I was able to walk on our treadmill within days.

I hope that you will receive a range of responses. it is a weekend in the summer so it may be slow? Best wishes on a well-informed decision.

Mag1913

Mkinoly...thank you for your response. The tamoxifen made not feel human, the lupron is okay so far, first shot no problem, this second one I've been sore where I got the shot, kind of making my stomach feel off, and I'm having trouble sleeping. I'm hoping the ooph and the AI they put me on will give some sense of normalcy back. I'm sure my dh will not like loss of libido lol. I still probably have a good 10+ years before natural menopause what have set in...my family seems to like the late 50's to start! I agree this isn't a choice I ever thought I would have to make either, does make you angry!! Your experience definitely helps! Thanks you

Daisylover...thank you for sharing what effects you have had with lupron and that the ooph was the right direction for you. I'm hoping that just like my lumpectomy I recover quickly after having my oomp. I'm looking forward to getting back to my long walks, I miss them!

Bless you both

TinyDancer5

I had my first Lupron injection today. Ouch! I'm schedule for a shot every month. Tamoxifen hasn't lowered my Estradiol, so my MO said let's try adding LUPRON injections to see if my number goes down. I am hoping it works. Otherwise my next option is an Ooph and switch to an AI.

Mag1913

tinydancer5...I Agree ouch on the lupron shot. I've been lucky so far on it with minimum side effects, I'm even back to walking 2 miles and have done Zumba a couple times. I have one more shot than I have my surgery scheduled for my ooph...September 21st is the magic date. My child bearing days are over so my MO feels the ooph and an AI are my best route. I hope the lupron shot works for you and lowers your estradiol so you don't have to get the ooph. Bless you on this journey none of us planned!!

KathyL624

Can I ask you 1A ladies why you are doing Lupron? I pushed for it because I am young (39) but my doctor really thinks I would be fine with just tamoxifen based on SOFT and other trials. Are you high risk based on oncotype or some other factors

Mag1913

I'm doing lupron because I had a really hard time on tamoxifen. If things would have gone smooth I would have just stayed on tamoxifen for 10 years.

Logang

I am 39 and my MO recommended zoladex injections and an AI after recent studies showing it more effective at preventing recurrence. I have been thinking about the ovary removal though...

TinyDancer5

Mag1913, thanks. I had a few hot flashes already this weekend. Other than that, I feel fine.

I'm 52 and I haven't had any problems takng Tamoxifen, other than very high Estradiol numbers. I had a TVUS last month and it showed a cyst on an ovary - that may be a cause of such high numbers. My MO decided to start Lupron injections now and have another TVUS next month to check it.

Novagirl

Mag1913- I also could not tolerate tamoxifen for a host of reasons. I did the drug break and restart to see if that would help, it didn't. My MO put me on Fareston instead. It is a SERM like tamoxifen but much easier for me to tolerate. It's being used off label in my case and there is no generic, so it's expensive but I feel like myself. I've never done Lupron injections.

TinyDancer5

I had my second monthly Lupron injection this week. I was wondering how many injections have you all had?

Mag1913

I had 3 shots, I started having hot flashes after my second shot. I just had my oophorectomy on the 21st and I'm recovering nicely.

meg2016

Mag1913 can I ask what made you decide to go ahead with the oophorectomy? Just started Lupron but considering the same after I complete radiation. Did your insurance cover it?

Mag1913

Meg2016...my MO and I decided since I'm 45, not going to have any more children that the oophorectomy was a better way to go than continue getting the lupron shot every month. I'm a year and a half out from diagnosis and was almost 100% estrogen fed, that was also key to my decision. My insurance did cover it, but I have Medicaid specifically for cancer patients since I didn't have insurance at the time I was diagnosed. I wish you the best of luck on the rest of this journey none of chose to be on!