who has stopped tamoxifen- regrets, reoccurance?

well I am done after 4 years of AIs I think I have permanent ear ringing joint pain and eye sinus problem. I don't think any of this is going away. I will not let it get any worse, I am done these are the good days I have left.

I was taking tamoxifen from June 2014 till December 2015. I was really on the fence abount taking it but gave it a try. I had terrible lower back pain. It felt like I was 90 for the first 15 minutes in the morning. I would wake up every time I had to turn in bed or change my position due to lower back stiffness and pain. I stopped taking it for a month in Decemebr of 2014. All pain went away within a month. Oh, vaginal dryness dissapeared too:) I was back on tamoxifen later on in January 2015. All of the side effects came back. Long story short: my onclogist took me off the tamoxifen. I had two tests for my estrogen done when I was initially diagnosed. One of them was 10% positive and the other one was negative. That's why I wasn't very sure about taking it at the beginning. A year and half later,endometrial hyperplasia, biopsy and d&c procedure later, I stopped it. I was so relieved when my oncologist advised me to stop taking it as well. The estrogen test that came back negative was a part of a clinical trial Mammaprint. It was considered to be more precise than the other test. I hope it helps someone out there who is looking for answers. I wasn't gonna continue my tamoxifen jorney regardless of my oncologist opinion but hearing her saying to stop it before I mentioned I was off of it was priceless. Hugs and love to all:

I took it for two years after first diagnosis of ILC, had dizziness, lightheadedness and developed fibroids with terribly heavy periods. Eventually I had heart palpitations which were frightening. I couldn't continue it. Unfortunately I have had a second diagnosis of ILC last year. Sometimes I wonder, should I have continued it for longer than two years? My doctors weren't helpful at that time and pretty much left me on my own. All these decisions are unbelievably hard.

Hi iowasurvivor:

To my knowledge as a layperson, DIM is a supplement (not a pharmaceutical), and is not equivalent to tamoxifen. According to the FDA label, the chemical name of tamoxifen is "(Z)2-[4-(1,2-diphenyl-1-butenyl) phenoxy]-N, N-dimethylethanamine 2 hydroxy-1,2,3- propanetricarboxylate (1:1)."

I believe that coraleliz consulted her medical oncologist as a first step. This is because a person receiving tamoxifen as a result of a diagnosis of DCIS should not unilaterally alter the amount of drug prescribed without first speaking to their medical oncologist. Such discussion should include an explanation of the clinical evidence available regarding the specific modified dose, quality of the evidence, and what is currently known about efficacy of that dose as compared with the original dose, in order to determine whether such reduction is appropriate in their particular case and for informed decision-making.

Post-menopausal women with DCIS may now have an additional option of an aromatase inhibitor, although such use may be "off-label", a point to discuss with the MO. The National Comprehensive Cancer Network (NCCN) treatment guidelines for breast cancer (Version 1.2016) were recently revised to include the option of an aromatase inhibitor for postmenopausal patients with DCIS.

The following recent publications relate to anastrozole (Arimidex) in DCIS:

Onclive re NRG Oncology/NSABP B-35: http://www.onclive.com/conference-coverage/asco-20...

NSABP B-35: http://dx.doi.org/10.1016/S0140-6736(15)01168-X

NSABP B-35 Patient-reported outcomes: http://dx.doi.org/10.1016/S0140-6736(15)01169-1

IBIS-II: http://dx.doi.org/10.1016/S0140-6736(15)01129-0

I would recommend that you check in with your MO to report your experience so far.

BarredOwl

iowasurvivor, I was on Tamoxifen for three weeks in between two lumpectomies. I could not tolerate Tamoxifen. I went off of the drug, then the MO said to stop taking it. Doctors have offered me the option of five to ten years of aromatase inhibitor drugs. My bones are strong with no osteoporosis, so I agreed to try the AI drugs. It is my understanding that many postmenopausal women take AI drugs after a DCIS diagnosis to prevent recurrence. It is a very commonly accepted option. Some people try out various generics of the AI drugs because the generics can differ in side effects.

I will not stay on the AI drugs if they destroy my quality of life. I am already disabled from fibromyalgia and Lyme arthritis. I am not going to add any additional misery to my life.

7of9, I am so glad you were able to tolerate Tamoxifen. I am glad too that you had a clean scan. I think it is possible that Tamoxifen shrunk my DCIS tumor in the three weeks that I took it in between surgeries and that my immune system destroyed the remaining cancer cells. There is no clear answer to the medical mystery (aka miracle) of why I had a negative path report after my second lumpectomy that was really a partial mastectomy as the surgeon removed a huge chunk of tissue that the PS replaced during the bi-lateral breast lift and reduction and flap surgery.