Is Tamoxifen the Devil?

Have you heard of “tribal knowledge?”

Wikipedia says, “Tribal knowledge is information or knowledge that is known within a tribe but often unknown outside of it. A tribe, in this sense, may be a group or subgroup of people that share such a common knowledge.”

There’s a LOT of tribal knowledge in the breast cancer community.

• “If you’re getting a Neulasta shot, make sure to take an antihistamine along with it to help with the bone pain.”
• “Be sure to ask for some muscle relaxers to relieve your pain after getting your expanders filled.”
• “You’re going on a hormone blocker? Get ready to gain weight and NEVER lose it! AND you’ll lose your libido, too!”
• “Tamoxifen is the devil. It made me feel like I was 80.”

To remind you, I’m not a medical professional ... I’m just a survivor, writing from the trenches.

Poor Tamoxifen has a bad rap.  It’s the most often prescribed hormone blocker for pre-menopausal women. There are several blockers available for post-menopausal women. But Tamoxifen continues to stand pretty much alone.

An article from Healthline, Tamoxifen Helps Prevent Breast Cancer, But Women Are Still Reluctant to Take It, shows that the breast cancer community seems to be rebelling against taking hormone blockers. Yes, it may be effective against a recurrence of The Beast, but some women are reluctant to sacrifice the quality of their life.

I founded a private breast cancer support group on Facebook several years ago. We continue to serve thousands of women there. I’ve learned some hard lessons through it. Let me tell you something I have found to be true about breast cancer tribal knowledge. Women who are having “trouble” of some sort tend to speak up or post much more often than women who are breezing through treatment. The latter group actually feels GUILTY when they hear how their other sisters are suffering …. So they clam up.

That’s truly a shame. Because there’s no counterbalance to tell our community that tamoxifen isn’t the devil … at least, not in all cases. There are rarely comments from women who breeze through their hormone blocker season to encourage you that you might have few or even no side effects.

The reality is that every woman’s body reacts to every single part of treatment in its own way. My personal encouragement is for you to talk with your doctor about potential alternatives and to “get your numbers.” Ask your oncologist what your recurrence and mortality rates will be taking it versus not taking it. Those numbers just might make your decision easier.

So remember that the tribal knowledge you hear about Tamoxifen might not be from all the voices … it's probably from just the loudest voices!

Written with love by Jan James, Hope After Breast Cancer

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