When do the side effects outweigh the benefits of taking Tamoxifen?

grams2jc said:

I am with you too
My cycle didn't stop until later in chemo, at least 1/2 way through. Then on my 1st trip to the gyno after treatment she recommended the pelvic ultrasound as a baseline for the Tamoxifen...ovarian cyst, fibroid and uterine thickening. Had the biopsy of the uterine lining with normal results so now will have pelvic ultrasounds again every 6 months. Will talk to my MO in October when I see her as my gyno really does recommend a hyst.

I don't know, can't decide, I guess when I get more info and maybe see what another ultrasound shows I will decide. Also will take into consideration my MOs opinion.

Good luck, we are all in this together,

Jennifer

Heatherbelle said:

hysterectomy last week
Hi Rusie.
I was diagnosed last year at age 34. I had bilateral mast + chemo. I was put on tamoxifen after chemo and started getting terrible joint pain. My oncologist didn't believe it was related to the tamoxifen, and i eventually went to another onc for a 2nd opinion about the tamox - and ended up getting taken off of it - i'm not even ER+, and just barely PR+, so it wasn't doing be a bit of good, and making me feel like crap to boot!
My new onc also ordered up genetic testing, and it came back that i am BRCA1 positive. Which means increased risk of ovarian cancer. She, my gynecologist, and my family doctor ALL recommended having at least my ovaries removed. So last tuesday I had a complete prophylactic hysterectomy - every thing out. I'm done having babies anyway, so it was an easy decision for me. I had the DaVinci robotic surgery -just a few incisions on my belly & everything done laproscopically. No stitches on the outside, 1 night hospital stay, and considerably less painful & shorter healing time than a standard hyst. One of my nurses at the hospital was completely shocked that I had that surgery with technically nothing wrong with me down there. I now have peace of mind knowing that ovarian and uterine cancers are not in my future. For now, I'm not on any anti-cancer type drugs. I have a follow up with my oncologist in a few weeks and we'll see from there if I will be on anything. I guess I'm technically in menopause now so there may be something I can take.
Another note - i was never told of any heart issues related to my hysterectomy & as i said earlier, ALL of my physicians wholeheartedly recommended it. My hot flashes aren't too bad, i take vitamin E for them & it really helps. I expected to feel a little "out of whack" for a few weeks from my hormones going away, but that is getting better every day.
Best of luck to you
*hugs*
Heather

jendrey said:

before even taking the first pill.
Hi Rusie - so sorry you have cause to be here, but glad you found us!

When do the side effects outweigh the benefits of taking Tamoxifen? For me, that was before taking the very first pill. I have so many lingering side effects from 'treatment' that I've simply outright refused to subject myself to who-knows-what-else-life-changing side effects would likely occur with Tamoxifen. Ditto for the Arimidex et al. ...

Of course, nobody in oncology can comprehend that I've actively chosen this path. Thus, a visit there usually results in yet another scrip. I've gotten five so far.

Have you considered appealing your insurance company in their decision of denying you this test? Who is your insurance company?

Might want to run the STAR study by your doctor for consideration of tamoxifen's less evil cousin Rayloxifene. I suppose it'd hinge on peri/post menopausal status.

You can come here anytime to vent. We so get it here.

(((Hugs)))

Hi All,

I had BC in 2009 and have been on Tamoxifen since the end of my radiation treatment. The recommendation was for me to take tamoxifen for 5 years and zoladex injections for two years. During the firts two years while I was still on zoladex, I had no problem with cysts. However, the treatment put me on an indulced menopause, which with time I managed to deal with all the sysmptoms. I stopped Zoladex a year ago and I was expected to have my period back. Nothing happened during this first year without zoladex; however, since lastt December I started to have cramps, like period cramps but no period. When I did my regular check up this time the small cysts that I had in my ovaries had grown a lot to 7 cm, and I had a polip. I have 3 doctors following up my treatment, a breast surgeon, the oncologist and the gyno. They all agree that I cannot do any treatmentto that other women that did not BC can do to eliminate the cysts. The option given to me now are either go back to zoladex( which is really bad) or to remove my ovaries. 

We did an experiment this month to stop the tamoxifen for one month to see if the cysts would reduce. It did reduce a little bit and I even got my period after 3 1/2 years; however, its not enough, and once I go back to tamoxifen the cysts will grow again. I was also told by my Gyno and the doctor who did the TV Ultrasound that another risk of very large cysts( over 5 cm) is that they may strangle the vains in the ovaries( something like that) and this can become a medical emergency. 

So right now I'm very inclined to do the surgery to remove the ovaries and get this over with. I have been with regular cramps non stop from these cysts, and I need to be able to function normally again. None of the doctors said anything about heart risks. 

Any comments or suggestions about it will be appreciated. Have a nice weekend!!