Just wanted to chime in with another experience. I was diagnosed with stage 1, grade 1, invasive ductal carcinoma in December of 2012, when I was 46. My oncotype score was 8. I had a lumpectomy plus radiation, no chemo.

I've been on Tamoxifen for about 3.5 years, and it's been a mixed bag. On the plus side, I haven't gained any weight and I swear the pill has been smoothing out my moods quite a bit. On the negative side, I have night-time hot flashes, occasional joint pain and stomach upset, thinning hair, and some mental fogginess. The worst side effect by far is my decreased sex drive and decreased genital sensitivity. I really miss how sex used to feel. I definitely don't get much out of it now, but I try my best to be enthusiastic, for my husband's sake. Also, my endometrial lining thickened and I needed to have a uterine biopsy (which was negative) and a D&C (which had normal results for someone on Tamoxifen).

I am looking forward to getting off this drug, but I am so thankful that it exists. I really believe in the power of Tamoxifen to prevent recurrence, which is why I'm still taking it. I am committed to finishing up my 5 years, so I know that I did everything I could to keep the BC monster from coming back.

I had an ONCOTYPE DX of 18 and I didn't do chemo either. I was offered Radiation, but I refused because the %'s just wasn't significant enough for me because of my age. Anyway, where I'm at now is that I.ve been on Letrozole for 7 months and I just can't take the SE any more, especially walking around like an old woman of 80, even though I am older I've been active my whole life. Also, I started getting migraines and have never experienced those before either. I'm going to try Aromisin, the generic because of course insurance won't pay for the brand, which I'm going to appeal. I've been off my Letrozole for one week and my bones feel much better, but I still still hot flashes but no headaches. I also receive Prolia 2x annually. Do I bite the bullet like so many other women or do I try to live my life as normally as possible. Either way I live in fear that the BC might come back with a vengence. My breast surgeon said she got it all and I've had 2 clear breast exams. That might mean nothing. I keep on this site because so many omen give incredible advice and share their stories. It's a wonderful community and really helps with making our decisions.

I don't think automated scoring of Ki-67 is available yet for most of us. If they have new more mathmatical way to evaluate KI, rather than just human eyeballs, that will be great.. but it's not out there yet.

My 2 cents worth is this. I just passed my 5 year milestone. I did take Tamoxifen and did have occasional joint pain and lack of concentration. There are women who have debilitating side effects from the drug. My ONC said I don't need to take it for 10 years.

I was afraid not to take it. I had Stage 1b, Grade 1 IDC. I had a lumpectomy and 33 radiation treatments. My tumor was small and my Oncotype score was 11.

That's encouraging your friend is okay after 3 years but BC is not one size, fits all.

I would at least try it. It's your decision and your life. Just be sure you don't second guess yourself or look back and say I wish I had.

There are women who have recurrences who did take it. We all know there are no guarantees.

Also there are other drugs besides Tamoxifen if it causes too many side effects.

Good luck!

Diane

I feel the same way!!. Diagnosed Jan 2016 left breast.

I was stage 1 mixed lobular & ductal, low recurrence, grade 2, <2cm, 0 lymph, Oncotype dx 14, Er+PR+, Herz2-, double mastectomy, no chemo or radiation. Reconstruction Silicone Implants 10/2016, 62 yr. Postmenopausal

Hormone therapy prescribed. I tried all 3 aromatase inhibitors the last 6 months and could not tolerate the side effects of any of them! I asked my oncologist to run tests for all my hormone levels while being on hormone therapy. The side effects scared me so much that I went off them. I am seeking out homeopathic therapy. I do not believe these harsh toxic drugs can be good & I do not believe osteporosis, stroke or any of the multitude of side effects that can kill or maime are better than the risk. I am having my oncologist run a new test of all my hormone levels being off the therapy to see if there's really much difference. There are changes in lifestyle and diet that can reverse cancer....a lot to learn. Your hormones need to be balanced and inhibitors only block some receptors. there's plant based and anti- estrogen foods, there are holistic hormone inhibitors and hormone balancers (seek out knowledgeable people at health food store & homeopathic doctor with lots of experience.) Watch the 9 episodes of "The Truth About Cancer" and share it! There are therapies that cure cancer, even the latest stages, taking place all over the world, instead of the toxic therapies western medicine prescribes, controlled by the pharmaceutical companies! Seek & ye shall find what best suits you and your conscience! I will not put myself thru these unhealthy, break down your immune system therapies! God gave us every natural fruit, vegetable & plant, herbs, spices, essential oils, etc.. for our good. All we need to cure every disease or ailment is on this planet. Steer clear of all the environmental toxins & poison in our food. We are all in this together & I felt compelled to share what I learned after my mastectomies, cuz they rush you into surgery without the information to make an informed decision. By the way, several mammograms did not find my cancer even though I pointed out my lump. It took an ultrasound. Best of luck!!

Kaiser Permantente (our insurance HMO) is willing to test my Endoxifen levels for $30. That will determine how I'm metabolizing Tamoxifen. I want to make sure I'm in therapeutic levels, since I have no side effects and Im an Ultra-rapid metabolizer. This is all new science and the Mayo clinic is currently doing a test for an active drug endoxifen - (removing the middle step of Tamox).

As FYI: I view Tamoxifen as a natural substance, from the yew tree.... It's a huge blessing to me.

I probably am confusing it... I thought Tamoxifen was discovered from nature.

I can answer the Pacific yew question quite authoritatively, since my husband was a Taxol researcher back in the late 70's--for his work on Taxol, he used the Pacific yew. An American pharmaceutical company picked up on this research and the patented and marketed the drug Taxol based. (Tamoxifen was developed by the Swedish firm Astra-Zeneca.)

I was very scared to take tamoxifen, I literally started crying when I was handed the prescription. But I have now been on it since May, the only side effect I have had this hot flashes and they have reduced a lot.

Personally I think it's worth trying, if you cannot live with the side effects you can always stop, but if you don't try you will never know

HI Nancy

Being ER+, hormone therapy gives you a 50% reduction. Its the big guns and can save your life. The side effects do lessen over time.

Today I saw my MO to go over my pathology from bilateral mastectomy. I was HER2+, Er 20%. There is no cancer remaining in my breast or the lymph nodes they removed. I was surprised when the MO said she would like me to consider tamoxifen and the first response, in my head, was no way. After reading the comments here, I realize I can stop taking it if the SEs are too much for me. Thank you all for helping e find perspective in this decision. We are going to discuss this some more over the next couple Herceptin treatments but I feel much better about this.

bevin...I'm happy that you did well on anti hormone therapy. However the statement that the SEs lessen in time is not exactly correct. Everyone is different and sometimes SE actually get worse in time. Also some of the aromatase joint issues can be permanent. I'm not saying you shouldn't take them. I'm just saying we should all make informed decisions. I also would like to validate the women who do have major SEs. I would love to see better treatment options. Good luck to all navigating this disease.