If anyone knows anythng about this drug and is willing to share, I'd appreciate it. There's a chance my sister may be going on it after her surgery and radiation. Thank you...

Been there, done that. Had the recommended 5 years and am now on Femara (Letrozole.) Being active in the survivor community, I know at least 40 other people who took or are currently taking Tamoxifen. Tamoxifen has been studied for at least 20 years, with a lot of research and clinical trials. I have tons of info, but will start with some basics.

Indications: ER (estrogen receptive) positive tumors only. Tamoxifen is mostly ineffective on ER negative tumors. ER + or - is determined by testing a tissue sample taken during the biopsy or other surgery.

How it works (in fuzzy lay terms): Tamoxifen creates fake receptors so existing estrogen will bond to the fake ones as opposed to the real. Estrogen-based cancer can't thrive on the fake ones.

The standard # is, Tamoxifen will reduce the chance of recurrence by 50%. I was given 40% chance of recurrence; with Tamoxifen, this was reduced to 20%.

Risks: 1. slight increase in uterine cancer. Uterine cancer is always slow growing and can be contained by a hysterectomy. Twice a year, I saw a gynecologist who specialized in cancer patients.
2. blood clots, which are potentially fatal. Risk goes up with overweight and smoking. Blood clots linked to Tamoxifen have not been recorded in average weight women under 50 years old. I personally don't know anyone who got blood clots or uterine cancer on Tamoxifen.

Side effects, at least 75% probability by my unscientific observations: 1. weight gain. I know women who put on 50 lbs. in 6 months. I gained 9 lbs. in 2 months, and I was eating less. To put this in perspective, I had only gained 5 lbs. since high school graduation prior to that. The way I look at it, my food thermostat broke. 2. hot flashes and night sweats. The more overweight and inactive a woman is, the more likely these are. Lucky me never got a one.

What your sister needs to know is what her projected recurrence risk % is. That will help her assess her risk vs. benefit in taking this. If she's ER -, I'd say don't.

Meredith, this is so helpful. I'm going to print it and give it to her once her surgery is behind her.

I'm grateful that you've met with success from your procedures and medicines. You're an inspiration.

Is there a reason they switched drugs for you?

Thanks so much. I think it's best to hear information from people who have been there, done that!

I appreciate your willingness to share this information so much! Bless you!

[ May 16, 2004, 03:43 PM: Message edited by: Dotsie ]

Dotsie,
My mom used tamoxifin after her mastectomy a few years ago. Of course, she's older, so that's a factor. But she suffered from mini strokes (blood clots) and hasn't been quite up to snuff. She also developed eye problems, another of the "side effects." My sister convinced her to quit taking it. There's tons of info on the internet about it, and some of the latest studies aren't all that good. I'm sending you a link.

Here's a website by a woman from near where I grew up. It seems to contain a lot of up to date information about this medication.

The site also includes a lot of other information that might be of interest to a lot of us.

http://www.innerself.com/Health/tamoxifen.htm

smile

How funny -- that's the exact same link that I emailed to Dots! scary stuff.

DJ and Smile, thanks o much for thinking of my sister. I will print this information and share it with her.

The doctor shared 3 new drugs that were possibilities. We shall see.

DJ, I hope you have regular mammograms. The doctor who sent my sister to have her cyst biopsied only did it because of her family history. It got by the radiologist, but her GP knows the family and chose to send her just in case. My mom had cancer and her mom had a mastectomy. Always make sure you share your families health history with your doctors.

Actually, funny you should ask. No, I don't. I'm really ambivalent about mammograms and my gynos never urge me. My mom -- who also took estrogen replacement for maybe 35 years -- had them regularly for years but found the lump herself. That's a story I hear over and over again. Do they really detect cancer, or is it a PR hype?

Here's a website about a Toronto study that questions the effectiveness of mammography in identifying early breast when compared to regular breast exams.

http://www.newsandevents.utoronto.ca/bin1/000919a.asp

Lots of women don't do BSE, so mammograms are necessary, and apparently there are few side effects, so....
smile

smile

I switched drugs because after 5 years Tamoxifen is less effective and the risks go up. Femara completely stops estrogen production and is for 3 years if no contraindications.