Benefits of Tamoxifen vs. Side Effects

loggerhead2017

I recently had a bilateral mastectomy for Stage 1 cancer on the left and Stage 0 on the right. Lymph node biopsy negative. Going through reconstruction. My oncologist wants me to start Tamoxifen for 5 years. Here are my concerns.....

1. Apparently there is only a 2% reduction in recurrence in my case vs. not doing anything else treatment wise at all.

2. I understand there is a bone thinning risk in pre-menopausal women. I have osteoporosis on both sides of my family.

3. Not to mention the other possible side effects of blood clots, hot flashes, hair thinning, uterine cancer (already have fibroids).

4. My oncologist has taken me off of birth control which I have been on for 33 years and I am already feeling the effects of that.

I guess I am really on the fence about whether the Tamoxifen is really worth it. Any thoughts......

gb2115

Are your cancer cells ER positive?

Professor50

Tamoxifen doesn't harm bones. That's an issue with AIs not tamoxifen. If your tumors were ER+ you might at least give it a try.

Michelle_in_cornland

There are no bone thinning risks with Tamoxifen, actually it is the opposite. The benefits, meaning risk reduction, are underestimated by many patients. I could say, for instance, this only offers me a 5% benefit. However, Oncotype scoring would change if Tamoxifen were not factored in, and chances for distant recurrence would be higher. I was hesitant in taking it as well, but late at night, I would read the stage IV section on this website which fortified the reasons for taking it. My late night sessions reading were the "keeping it real" aspect of taking the medication. There are side effects, but they are more rare. The people that post about side effects on here, are the ones that we will read about. Many women take Tamoxifen without issues, and are not posting on this website.

BarredOwl

Actually, some effects on bone have been observed with tamoxifen. For example, the FDA label (dated 09-27-05) for the brand name drug (NOLVADEX (tamoxifen)) states:

"A subgroup analysis of the P-1 trial, suggests a difference in effect in bone mineral density (BMD) related to menopausal status in patients receiving NOLVADEX. In postmenopausal women there was no evidence of bone loss of the lumbar spine and hip. Conversely, NOLVADEX was associated with significant bone loss of the lumbar spine and hip in premenopausal women."

Loggerhead2017:

Was it your medical oncologist who advised you of a 2% reduction in recurrence risk in your case, or did you obtain that information elsewhere?

What was the nature of the risk estimate (e.g., risk of recurrent or new disease on the left and right; distant (metastatic) recurrence risk) and time-frame (e.g., 5-year risk, 10-risk, other?)?

It would be helpful if you would fill out your profile or provide some additional info regarding the invasive Stage I disease, including tumor histology (e.g., ductal, lobular, etcetera), the size of your tumor (based on combined, lymph node status, and ER, PR and HER2 status.

Also, were the surgical margins for both DCIS and invasive disease adequate?

BarredOwl

Bounce

My GP said that 10% of women taking Tamoxifen do have bone thinning and he insisted I do a bone density test.

A quick Google search shows in premenopausal women there may be bone thinning with Tamoxifen.

SpecialK

In pre-menopausal women Tamoxifen can result in lowered bone density, though not universally. If you have other risk factors for bone loss, you should take that potential into consideration. The opposite appears to be true for post-menopausal women, Tamoxifen can help build bone. For post-meno patients who can't tolerate aromatase inhibitors (which can decrease density), or can't offset bone loss with bisphosphanates or Prolia while on AI drugs, Tamoxifen can be a good option. I would recommend getting a DEXA before starting either Tamoxifen or any AI drug.

https://www.ncbi.nlm.nih.gov/m/pubmed/8558225/

http://www.nejm.org/doi/full/10.1056/NEJM199203263...

Michelle_in_cornland

Go back to your oncologist, get information, and make the best decision for yourself. This is my opinion, but an opinion backed with a pharmacy school education. You don't want to have regrets later on. Try it, if it does not work for you, then there is your decision. I want a win for everyone with this diagnosis, and winning means saying focused on the grand prize - no recurrence, no mets. Do everything you can to help yourself now..........

rae41

i have been on tamoxifen for 16 months, and I am having some very bad joint pain especially when I exercise that just randomly started out of nowhere. I also have night sweats. . I have to take it for 10 years!!!!