Tamoxifen warning

[europa]

I went through something horrific last week and wanted to share since it could happen to anyone taking Tamoxifen.
As many of you know Tamoxifen can cause uterine cancer, tiny chance, but it can happen. So Sunday night I was getting into the shower when I noticed I was spotting. This is weird for me because I have not spotted or had a period in years...since chemo. So I called my doctor who was not too concerned but wanted me to pop in the next day for an ultrasound. I woke up the next morning to what looked like a horrible miscarriage. There was blood everywhere and I was losing it fast...like it was pumping out of me. I called my doctor who obviously had me come in. I don't think they understood the volume I was describing because I'm sure they would of asked me to call the ambulance. I drove myself to the hospital (which was a HUGE mistake), I was in no state to do so. My doctor performed an ultrasound and found nothing. So then the tests started, did I have a miscarriage, could it be my thyroid, maybe it was a period...blah blah blah. I was losing blood during all the blood work and inquisitions. Finally they performed a scan where they blew up my uterus with saline. And there on the screen was a large polyp. So there was the answer. However when they took out the clamp and other gadgets it created a massive blood Avalanche and that was it. I went into convulsions and was rushed into the ER and then into emergency surgery. They did a DNC and got rid of the polyp. But now I am left with a decision, should I stay on Tamoxifen for 7 more years and face this again potentially or should I start getting Lupron or Zoladex shots again and switch to Arimidex. By the way, I had horrible side effects from Zoladex. I lost a lot of hair, gained 17 pounds in three weeks and broke out in menopausal acne.
This is the second DNC they've done. The last one was in February. I was experiencing painful cramps and they found 4 polyps...all benign.

Thoughts?

[Lucy]

Just from looking at your signature, I would discuss with my oncologist going off hormone therapy. A few years ago they wouldn't put women on it if they were 10% or less ER positive and I've been told twice now that there's no evidence showing that there's a real benefit to taking hormone therapy for lower ER positive cancers. I took anastrozole for a while because it might help but it was causing enough liver issues that I was taken off of it and they're still doing tests before we even discuss my going back on it. Part of me is afraid to not go back on it but another part of me wonders if it's worth it. Everyone has to make that decision for themselves but I think I would still discuss it with the oncologist.

I hope everything works out for you because I can only imagine how scary that must've been. Let us know what you decide and how it goes.

Hugs

[jaykay]

I would go off the tamoxifen and talk to your onc about alternatives because what you are describing is one of the more dangerous side effects. Glad you are okay but I wouldn't want to go through that again. It had to be terrifying

Janis

[Debbie L.]

Hi Europa. What a terrible week. Are you feeling recovered? Did you get a transfusion? Are you taking supplemental iron to build back up?

I see one other option. A vaginal hysterectomy (uterus only) is a pretty simple procedure. Then you could continue with the Tamoxifen (if the uterine side effects are your only concern with it), and not have to worry about all that goes with being menopausal (since you'd still have your ovaries, even though you would no longer have periods, you wouldn't actually be menopausal).

As others have mentioned, suppressing your ovaries now so you could take an AI might make more sense if the cancer were strongly ER+. In your case, the side effects (early menopause, bone loss, etc) might outweigh the benefits.

What does your onc think? It could be a good time for a second opinion at an NCI-designated Comprehensive Cancer Center, if that appeals.

Good luck, keep us posted, okay?

Debbie Laxague

[agness]

A little discussed fact is that for up to 20% of women of European descent, and 5% of those of Asian descent, tamoxifen is not properly metabolized in the liver. It is stated that for these patients taking tamoxifen is worse than doing nothing, likely due to unmanaged estrogen levels persisting in spite of supposed treatment. Docs know this, at least the decision-making bodies, and yet no testing is recommended -- presumably todave insurance companies money. Disgraceful if you ask me.

http://www.ncbi.nlm.nih.gov/books/NB...?report=reader

A gal in my online chemo group developed a massive amount of fibroids and ovarian cysts in a short amount of time while on tamox. She thought fine, I'll have a hyst. I have a lot of experience prior researching fibroids and I suggested that (since her surgery was delayed and she was in a lot of pain) that she ask her doc to switch her to Lupron of Zoladex which are GnRH inhibitors. These drugs both shrink fibroids as well as reduce estrogen in the body, also working for breast cancer patients.

Post-menopausal women should already be on aromatase inhibitors (unless perhaps you are weakly ER+ and doing natural methods to reduce estrogens). More recent studies have shown that ovarian suppression with lupron or zoladex plus an aromatase inhibitor seems to be more effective. None of these drugs are a walk in the park and estrogen depketion can increase cognitive impairment.

I hope this is helpful.

Ann

[europa]

Got my results back at the polyp was benign. So now comes the serious conversation with my oncologist about my uterus and Tamoxifen use, I'm leaning to remove the uterus and keeping the ovaries. But we'll see. Thank you all for the wonderful messages.

[LeahM]

That's what I did. Kept my uterus, got rid of everything else. Still take Tamox

[donocco]

Europa

I doubled checked my pharmacy material. The SERM Raloxifine (Evista) does not act as an estrogen on the uterus and cant induce cancers like Tamoxifen can.

Evista is FDA approved to PREVENT secondary breast cancers
like Tamoxifen, yet the literature states it shouldnt be used to treat breast cancer. This makes little sense to me. Talk with your oncologist about this. Maybe he (she) can tell you why Evista has been approved to prevent secondary breast cancers (like Tamoxifen) but has no anti-cancer action against already established cancers. This does not add up logically.

Paul

[Pat94]

Agness - regarding your statement "unless perhaps you are weakly ER+ and doing natural methods to reduce estrogens," what are natural methods? I was ER - 1st time & ER + 5% on recurrence. PR - on both. Onc wants to start me on Letrozole. I have major concerns about it because I believe it will have little or no positive impact while I have the side effects it brings on. Would love to investigate natural options.

[jra40]

Hi Europa,

Just wanted to share my recent experience. I have been on Tamoxifen since 2011 and it really caused me a lot of problems. Thickening of the uterine lining, irregular periods, etc. I am 44 and decided to go with a hysterectomy with ovary removal. I am 3 weeks out from surgery, moved from Tamoxifen to Arimidex. I am happy with my decision and physically, feeling very good at this point. It's a tough and personal decision but I did not like the side effects of Tamoxifen and anything I can do to cut my chances of reoccurrence, I will do.

Good luck with what you decide! Praying for you!

Jessica

[KathyT]

Jra40,
I am having a total hysterectomy Sept 8th and will switch from Tamoxifen to an AI. I have been nervous about the after effects of the hysterectomy....thanks for sharing your story it gives me courage and reassurance that I will do fine too

[agness]

Pat - I will post more to a new thread about natural ways to improve hormonal status. I just need a day or so to collect some links and quotes together

[europa]

And the verdict is in. After meeting with five doctors I have decided (if I get polyps again) to remove my uterus and keep my ovaries until I have completed Tamoxifen. Then I'll get the oopherectomy.
I am relieved that o now have a plan and everyone knows about it. So the next time, if there is a next time, no DNC.

[Debbie L.]

Thanks for the update, Europa. I agree -- it is always a relief to have a plan, and yours sounds like a good one.

Debbie Laxague