Tamoxifen

[Jenny5262]

Hello,

I had a Grade 1 invasive breast cancer in July 2008 at age 58. I had surgery, then radiation therapy for 7 weeks. Since then, I have tried two post-cancer hormonal drugs (Femara and Arimidex) and both have bad side effects - extreme bone and joint pain and now I have osteoporosis. I am now on Fosamax, ergocalciferol and calcium supplements.

Now my oncologist wants me to take Tamoxifen, but a side effect of the drug is blood clots. I had a DVT in my right calf in 1989; it did not move from that location.

My primary care physician did not tell me what to do, but he told me that since I had a blot clot once, that increased my chances of getting another one. My OB/GYN, whom I have gone to since I was 20, said if I were his wife, he would not "let me" take it because of that risk. I saw my oncologist again today and he isstill  really encouraging me to take it.

The TAILORx gene test put me in the Low Risk category of a tumor coming back. My oncologist said that since I am in the low risk group, I will have less benefit from the Tamoxifen than someone in the medium or high risk group. But he still feels I need to be on the medication.

My dilemma is - do I take the Tamoxifen to prevent a tumor in the future - and risk another blood clot? The clot scared the heck out of me when I had it...

Thanks,
Jenny

[Jenny5262]

Thank you both very much for your comments. I am definitely leaning toward not taking the Tamoxifen. My husband doesn't want me to...

I like katarina777's comment, "makes oncologists feel better about themselves to put patients on tamoxifen because this way they are doing all they can."  It made me think about what my radiation onc said when I asked him why I have to see him every 3 months when I see the surgeon and the medical onc every 3 months. He said,"There is a basic protocol for cancer patients that all oncs follow and that includes the 3-month visits... etc."  Maybe the Tamoxifen is part of that protocol and my onc just feels he needs to follow it - PERIOD.

Anyway, thanks both of you and I look forward to more comments.
Jenny

[katarina777]

Jenny...wow, that is a good comment from Sue Young 55, and she gave me the idea to agree with her mostly. What a decision to make.

My oncologist at the time when I was treated, and I had chemo, surgery, radiation and my bc was 3C something and also positive for estrogen...well, he was always thinking out aloud, and when I met with him after finishing radiation he sort of was talking to himself about how it makes oncologists feel better about themselves to put patients on tamoxifen because this way they are doing all they can. He also mumbled something about Tamoxifen not really preventing a recurrence in those who will have a recurrence, but that it delays the onset of one. So, if someone would have a recurrence after 2 years, this may with the Tamoxifen now take 5 years.

I do not know if any of this is true but he was a good oncologist. What his words bring up for me with you is, that id you are at low risk, then you are probably in the category of bc patients who will never have a recurrence, and  this makes me wonder if
you really need it? of course I am not an expert but I really do think it is very worth thinking on your part about not taking it, because tamoxifen can really suck, I mean really, although with me not nearly as horrible as Arimidex and Femara which I was just plain unable to tolerate. i would be scared about the blood clots too, especially since you already had that experience. i would go with my gynecologist and who would not allow his wife to take it; now that statement really means a lot don't you think?

KATRIN

[SueYoung55]

Wow Jenny, what a dilemna!

I am on tamoxifen but if it were me and I had blood clots I would absolutely not take it. All of the "drugs" have side effects and most do cause bone pain, that's why I'm still on tamoxifen.

Your decision... Sorry you have to make it. I don't even know what I'd do to be honest. Early Cancer, grade 1 so it's not aggressive... Best wishes with this decision! Talk about being between a rock & a hard place! You've got me almost speechless and that NEVER happens :)