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@sue417

Hi
Wow, you have been through the wringer. I am so sorry you have suffered so bad. Did the doctors never address your vaginal issues. I recently went through chronic UTIs my GP who I no longer go to was an idiot would just yell at me. My oncologist put me on vagifem and it works. It is a tiny tablet that you insert into your vagina to get the estrogen back in that area and it is safe to take if you've had breast cancer I can say that since I started it I do not have as much frequency I don't have pain anymore. Just wondering what your original breast cancer diagnosis was. I am 66. Just finished radiation I had a lumpectomy in December second surgery in February Sentinel nodes clear. I started 5 mg of tamoxifen first week was rough this week it feels like it's leveling out. I had a microscopic break
in one wall in the pathology but my oncologist said 5 mg is fine for dcis with a slight break he actually showed me studies that have been done in France. I hope that you find the relief you need for your bladder and vaginal issues. I cannot take AI because I have osteopenia and a compression fracture in my spine.

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Replies to "Hi Wow, you have been through the wringer. I am so sorry you have suffered so..."

The French studies you mention sound like the "baby tam" study of 700 Italian women that I, too, was aware of. I dropped back to 10 mg. every other day (baby Tam) because of the Italian study and then was told, 2 months in, that their tumors were "in situ" (had not broken out of the milk ducts) and mine, having been an invasive ductal carcinoma, was not the same. That is why he wanted me to step up the dosage from 5 daily (10 every other day) to 20 daily. And it was the "stepping up" that did me in. I could not tolerate 20 mg. a day, as described. My original presentation appeared to be positive. I think the stage grade was 1A and it was an 11 mm. tumor found early via mammogram. It was 95% estrogen positive and the surgeon got good margins and a seminal lymph node biopsy was done and showed no spread to the one I know of that they removed and studied. (Don't know if more should have been taken.) And I began taking 20 mg. of Anastrozole on Feb. 1, 2022, when my surgery had been on January 27, 2022, so that was less than a week out of surgery and I was battling a bad seroma (infection) with 500 mg,. of Cephalexan taken every 4 hours for weeks. (My radiation did not start until about May 22nd and the bone scan was very late in the game, also, and he refused to order an oncotype at all. I've now been reading up on late recurrence, and I am the perfect example of someone who might well have a late recurrence, because of the seroma (one of the indicators), being overweight, etc. My bones are now in to osteoporosis (probably thanks to Anastrozole and who knows if the radiation also contributed?) and I know, for a fact, that I was at -2.4T at my last endocrinologist appointment. I go in again in May (2 years since the last bone scan) to see if the 1200 mg. of calcium I take daily has helped or hurt. There are so many things I now question. My treatment by the Illinois oncologist has destroyed much of my faith in the medical system. He just didn't seem to care and was either woefully uninformed or simply neglectful and dismissive. I am unwilling to completely destroy my previous quality of life by taking a pill that is guaranteed to give me the worst pain I have ever experienced and might, also, cripple me again. I am not willing to suffer from UTIs needlessly, eother, and the constant feeling that you have to urinate (whether valid or not) is also not a good way to go through life. I was already dealing with what all diabetics deal with in that regard, and the Tamoxifen just took that up to another insufferable level. I don't have bladder and vaginal issues, unless I take Tamoxifen, and, like you, I cannot take A.I. adjuvant therapy because I have osteoporosis now, which is the gift that keeps on giving and one that should not have been given me at all.