Don't Want to Take Tamoxifen

I didn't have an oncotype or mammaprint because of HER2+ and nodal involvement. But I just asked my MO how much risk reduction am I actually getting from the Tamoxifen and in my case he said 10%. I was hoping he'd say 1-2% so I could justify not taking it but 10% is a pretty significant number. I've been on the Tamixifen for 7 weeks but I'm seriously considering stopping it. I don't like the aches and pains, personality change, or excessive hot flashes. MO told me to tough it out for 3 months and then decide. He said he thinks I should stay on it but understands that quality of life is important too. I'll give it 3 months and then reasses

I agree with Claire. Give it a try, and if you have trouble with it, then stop. I have no SEs from Tamoxifen at all except for hot flashes which I had anyway due to chemopause. My MO says that only a handful of women in her practice experience severe SEs. FYI survival rates calculated by Oncotype assume that you will take Tamoxifen. It is at least worth giving it a try. I fretted and delayed taking Tamoxifen, now that I've been on it spice April, I laugh at myself for over worrying

The lowest recurrence rate on the chart is around 4% (when I rec'd my results in 2012) even with a 0 score the recurrence rate is around 3 - 4%. So doubling the 4 to an 8 is my calculation for my risk without T. 50% improvement from 8 is 4. So my max improvement with T is about 4 %. However - my onc said "that's a lot of faith to put in that one number". I didn't take it for a year, then the monkey on my back from knowing I wasn't doing everything I could to prevent recurrence was worse than just taking the stupid pill. I agree with everyone else. It can't hurt to try. For me it was a freedom of sorts. When I started taking it I knew I was doing all I could. The rest was not up to me. My main SE is HFs and I take Effexor to help with that. Do I like taking it? No way. Will I keep taking it? Probably.

Hello Sisters & Comrades, this is my first post... yes, the club none of us wanted to belong in.

I'm new to forums so maybe this is not where to post but it seems the closest subject- feel free to guide me. It has been a roller coaster ride since being diagnosed in October. I'm 56-1/2 years old and still premenopausal (believe it or not). You would think that two lumpectomies and then a mastectomy (margins weren't clear until my mastectomy) would be the hardest part but I too am faced with this difficult hormone therapy dilemma that sometimes seems almost as overwhelming. Neither radiation nor chemo were in my treatment plan due to my 8% onco score.

I'm really not not liking the sound of the hormone therapy SEs for the next 5-10 yrs. It would most likely include tamoxifen until I'm menopausal, then switching to an AI, which can be even worse I hear. I'm worried most about the heart issues in my family history (aunt, Mom, granddad all had strokes, Dad had cardiomyopathy) coupled with my age, with regard to tamoxifen SEs. I brought up the idea of the injections to stop ovarian production of estrogen and my MO said we could do that instead or in addition to tamoxifen. (I believe the SOFT study might say I'm not the best candidate for both however due to my age?) I guess my main questions are, what about the shots vs tami with regard to both SEs and recurrence rates? Would either choice still mean that my recurrence rate (as determined by Oncotype score) is still 8%, or is the stat based on my taking just tamoxifen?

My MO appt was last week, and I was not prepared to make a decision then and there, despite my previous research and the fact that he answered all of my 15 questions, ha. I'm getting a second consultation with another MO on Monday, and I'll hit him with a new round of questions. I'm questioning my first MO's knowledge now as I read here about various tests for hormone levels, enzymes levels, etc which he failed to acknowledge were valid or necessary when I asked. So now I'm even doubting if he is the best for me. It is important to me to know that the drug would be helping me (!), and that they can monitor me - but it all seems so arbitrary! Also it doesn't help that this former city girl now lives in the boonies, and my doctor choices are limited unless I want to drive 3 hours for each doc appt.

Sorry so long- Thanks to all who contribute here, it really feels like an incredible sisterhood of support and wisdom, and for that I'm grateful.

farmerlucy, thanks for the quick reply! My oncotype score was/is 8%. I know that this assumes taking HRT, as without it this would mean 16%- is 16% the "recurrence rate" then? So confusing for us beginners

I'm wondering however if this 8% score is after taking tamoxifen, or whether it could also be after having the monthly ovarian suppression injections (zoladex)?

Boy, do I hear you on the "breakdown" part. I've always been anxious, but this dx has ramped everything way up. My particular manifestation is meltdowns or crying jags when on the phone with receptionists. The biggest was when the radiation oncologist's office had not gotten the memo that i had had a mastectomy, and were bent on scheduling me an appt. The radiation oncologist was on weeklong vacation (of course) and no one on the phone could tell me why. I assumed the worst. I have come to realize both parties play a role- me for my anxiety that makes me feel like a child without a mother, to them, for what seems to be the fragmentation of care/lack of communication between specialists. I have a local counselor that I've been seeing since my dx, but I'm also not satisfied with her. I wish there was an anxiety specialist nearby. There is such a lack of quality care where I live, all the more reason this site is helping me.

A follow up: I've been taking tamoxifen for only five days- so far so good! I'm questioning whether to take it morning or night as I'm not sleeping through the night that well, but this was really the case before the tamoxifen however. What made the difference to my being good with the decision was my second opinion with a new oncologist. His answers were much more lucid, and I felt that he took my concerns more seriously. I asked him if he had any openings for new patients and when he said yes, I switched oncologists! Early on I just did not feel there was time to shop around.

Concerning tamoxifen, the most interesting thing is that I was already having hot flashes before taking it, and they seem to have lessened a bit since taking it. I still have light ones a few times a day, just not the huge waves that used to come over me. Wondering how long until this drug is absorbed in my system. Seems funny to "look forward" to hot flashes, as an indicator the tami is working, doesn't it? Or maybe I'm wrong about this premise in the first place...

I don't want to take tamoxifen because of the side effects. Weight gain is #1. I've struggled to keep weight off since I entered menopause. I did lose 6 pounds wihile getting radiation therapy, but I barely ate during those 3 weeks. Cataracts. I go for eye exams every 6 months and I already have small cataracts. I'm afraid the tamoxifen will make them worse. Joint pain. I have pain in my hips, especially the left one. I have had PT on both of my shoulders. Again, I'm afraid the tamoxifen will make this worse. I have an appointment scheduled to see my internal medicine doctor in a few weeks. I will have blood work done and also a bone density test. He knows my medical history much better than my MO and RO so I will be guided by his advice.

ctgal - I think it is a whole different decision process when one's dx is pure DCIS. But what do I know. BUT if you don't take it you'll miss out on all those cool Tamoxifen dreams! Wow! Talk about living color!