Finished 5 years of tamoxifen...now they say 10 years?

rianne2580 · August 2016

I really don't want to take tamoxifen another 5 years. Tired of the side effects and I had an Oophorectomy in my 30's. Hoping someone can expand on this as my oncologist said it is entirely up to me. He did not encourage or discourage another 5 years. The study says prevents recurrence by 25%. I did not have chemo or radiation as my Onco Type DX said I had a 2% recurrence probability 5 yrs. ago. Hoping someone can add an opinion or more information regarding this dilemma.

Anonymous · August 2016

Rianne, this is your choice: to take or not to take. Many women are willing to forego the added benefits of taking Tamoxifen or an AI for longer than five years because of the harsh side effects many of us experience. Others are willing to take these drugs longer because we feel that the effects of the drugs don't outweigh the protection that they offer. It's really a quality of life issue: stop taking the drug and perhaps use other gentler ways of protecting yourself against recurrence, like regular moderate exercise, keeping weight below BMI 25, not smoking/drinking, using one of the anti-cancer diet guidelines, etc.

I am going to hang in there with my AI till the side effects are affecting my quality of life in ways I refuse to accept. So far my AI seems to be do-able, although it does come with SE that I wish I didn't have to endure.

It sounds like, with your ooph, you wouldn't need to remain on Tamox anyway? That's mostly used for pre-meno women, from what I understand.

Do more research, listen to others who hopefully will weigh in here, and ultimately consider what you're willing to live with and without, and go from there. You're in charge.

Crescent5 · August 2016

with only a 2% probability of recurrence, it's almost negligent to keep you on tamox for another 5 years. Just my opinion as someone with a 5% chance. It will be doubtful that the benefits will outweigh the negatives when I assess in a year whether or not to continue past 5 years.

annika12 · August 2016

I was told right away 10 years and I told my doctor I would a year at a time and reevaluate every new year. I have no SE so as of right now I am being a good patient. It's so hard making sll these decisions 😕

pupmom · August 2016

Well, a 25% reduction is HUGE. It's your decision, but I will be completing 10 years, based on the most recent, state of the art, research into the benefits of taking Tamoxifen for 10 years. I would take it for life, if the benefit was substantial. However, I have not had serious SEs, just hot flashes, and those are diminishing. If you can't take Tamoxifen, consider going to an Al, especially if you have had an Ooph. Best wishes.

pupmom · August 2016

Annika12, WHY are you being prescribed Tamoxifen when you are ER-?????

coraleliz · August 2016

You have to keep in mind relative vs absolute risk. If your risk for reoccurence is 10%, a 25% reduction will bring it down to only 7.5%. So many of us are really dealing with small numbers.

With Crescent5's 5% reoccurence(I assume stopping at 5years), continuing for another 5years will bring it down to 3.75%.

I was able to avoid chemo due to an oncotype of 4. The decision to continue past 5years is being left to me. Because the benefit is small. I plan to go off Tamoxifen & not even try an AI. If I find my mind riddled with worry, I can change my mind or maybe try counseling.

Bowiecat · August 2016

I'm struggling with the same decision. I just finished 5 years on Tamoxifen and now they recommend I continue for another 5. The breast cancer index test said I have a 6.1% risk of recurrence. Tamoxifen would reduce that to 2%. The last five years have been hell on Tamoxifen. I had horrible fatigue, sleeplessness, depression, anxiety, inability to focus, hot flashes, vaginal pain, weight gain, irritability, and hair loss. We decided I would take a month off while I'm deciding whether to continue and I feel great. All my SEs have vanished. Now what? I don't want to continue, but I'm afraid of a recurrence.

Lou10 · August 2016

Rianne, you may want to ask your MO about the risks of staying on Tamoxifen another five years. When the benefit would be so small for you -- e.g., reducing your risk of recurrence from 2% to 1.5% (based on the 25% figure) -- you may find that the risk of harm from Tamoxifen is higher than its benefit in reducing your risk of BC recurrence. The risk of endometrial cancer, stroke, and blood clots from another five years of Tamoxifen may be higher than 1.5%. Perhaps it would make your decision easier to weigh benefits against risks?

rianne2580 · August 2016

Great comments! I've decided not to continue on tamoxifen. Now I'm wondering if tam. causes reduction in kidney function. My GFR is 42 which makes me 3rd stage CKD. My past GFR from 2014 was over 60. I stopped all NSAIDS, but didn't take them very often anyways. This needs to be researched because I do not drink alcohol, do not smoke, exercise (swim, weights) 4 times/week and eat healthy. I gained 15 lbs. on tam. and I'm starting to lose weight already (lost 3 lbs. since end of July). I weighed 135 before tam. and shot up to 151. Now at 148. Could there be SE we don't know about?

Finished 5 years of tamoxifen...now they say 10 years?

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