Tamoxifen or what?

Catherine3

I am wondering if anyone else has ever felt this way. I was told to take Tamoxifen for sure after my treatments are over. So I am told that it is a wonderful drug that will increase my percentage of NOT getting cancer again by 12% which is huge. So I also know that it will kick off menopause for me and the list of side effects are longer than I ever imagined. So i am nervous about taking Tamoxifen. Things that make me nervous are things like heart issues since I have family with heart issues already and that could be something I am at risk for, blood clots is a family thing too and oh there is that dreaded weight gain thing that was hard for me before I got cancer so now I am really nervous. My dr's did not mention any other drugs instead of Tamoxifen. They kind of made it sound like the holy grail in my life. As I read the side effect possibilities I guess I wonder if there are other drugs out there and if anyone has made a different choice? Of course I plan on talking to my dr's but I don't see them again until May and well here I am thinking and wondering about it. I thought someone may have had similar thoughts or an experience on the subject. ❤️ Thank you

edwards750

Catherine - I am almost 5 years out from my DX and have taken Tamoxifen for 4 of these years. I was originally on Arimidex but due to bone issues - Arimidex attacks the bones - and a borderline DX of osteoporsis - my Dr switched me to Tamoxifen.

All drugs have SEs but the ones you mentioned are definitely possible with Tamoxifen. I had weight gain, difficulty concentrating and joint pain. I had a blood clot when I was 16 but my ONC said I have had 2 children since then so it would be okay to take it. It does throw you into menopause but I'm older than you and have already been through it. I have a friend whose daughter has BC and refused to take it for that reason. She is young too.

There are other drugs that are available. I can only guess Tamoxifen was prescribed because it is typical for younger women.

Do talk it over with your Dr. It's a decision that is yours and yours only. It's your body and your life. Just make sure you don't second guess yourself or look back and say what if.

Good luck!

Diane

Goodie16

Tamoxifen is typically prescribed to women who are premenopausal. If you want to try one of the other hormonal drugs, you would first need to be put into menopause either thru surgery (removal of ovaries) or have injections of Lupron. Tamoxifen on it's own will not put you into menopause.

All of the hormonals have huge lists of SEs. Everyone's bodies tolerates these drugs differently so yo may have very few SEs or you may have a lot. Continued discussions with your doctor can help you navigate these SEs and decide which treatment option is best for you you.

Catherine3

thanks so much for your response! I guess really I am just nervous and it helps to hear from women who understand-like really understand😉

Thank you!❤️

labelle

I was also worried about blood clots. My MO suggested daily aspirin therapy and staying active to help prevent that particular side effect. You may want to discuss this with your MO in more detail.

Goodie16

I also expressed concerns about blood clots from tamoxifen, as my mom died at 62 of a stroke. My oncologist sent me to a hematologist for a complete workup. According to the hematologist' findings, I wasn't at risk from blood clots. She explained that the risk of blood clots from tamoxifen is about the same as from birth control pills.

When I did begin to take tamoxifen, my oncologist prescribed a baby aspirin with it. I didn't have any problems with clots but did discontinue tamoxifen due to joint/muscle pain.

Catherine3

great suggestion. Thanks! I think I will ask about the aspirin.

ceanna

Catherine, you might want to make an appointment with a cardiologist before you start tamoxifen to see if you have any conditions that warrant concern.

Catherine3

yes good point. Thank you

labelle

You might also want to talk to your gyno about whether she/he recommends increased surveillance while on Tamoxifen due to possible thickening of the uterine lining that could signal a serious problem. My gyno suggested a baseline type vaginal ultrasound, and now, due to thickening is closely following me. I have another transvaginal ultasound scheduled in June.

My endo is also following me more closely now that I'm taking Tamoxifen, because it can interfere with the absorbency of thyroid meds and/or thyroid function.

Catherine3

yes I am going to ask about being monitored after I begin taking it. I am also concerned also about ovarian cancer since my mom had it. I should just get a hysterectomy but right now I cannot imagine any more operations in my life. Still recovering from breast surgeries so I am just not there yet. There are so many SE to Tam and everyone reacts differently so at this point I think just being monitored by myself and my dr is all I can really do. There is so much to worry about but I won't know until I know I guess. There seems to be a lot of positive talk about Tam too and well the results seems very successful so I guess I will have to jump in and embrace whatever comes my way. ❤️

labelle

Yes, lots and lots of women do just fine on Tamoxifen. The most common side effects are annoying but not life/health threatening. I had lots of worries about taking Tamoxifen but I found I was more able to take the plunge once I felt I had the bases covered in terms of the most serious (albeit, not common) side effects of blood clots and endometrial cancer. I didn't even know about the thyroid part until my endo said she'd now be seeing me every 3 months rather than every 6. Based on what she told me, I think women taking Tamoxifen might want to have their thyroid checked periodically although probably not as often as I apparently need to, but my thyroid has had issues for years.

ChgoDeb

On tamox for 2 1/2 years and having vaginal ultra sounds every 6 months. My uterine lining continues to increase and now up to 19mm. YIKES! I'm scheduled for a D&C. So scared of what they may find.