Tamoxifen and anastrozole

Dear Bloncape: I'm glad that I'm still around (and you are, too) to laugh at the things that would (otherwise) make us weep. I am 78 and grew up when doctors still made house calls. I think one of the saddest things, for me, is my current erosion of trust in the medical establishment. I honestly don't think my Illinois oncologist wanted to have to see me because he knew I would ask questions and he knew I would go read up on whether his answer was even close to the truth. (It seldom was). I couldn't get the man to actually show up for any of the appointments I had from December 7 of 2021 until I finally had had it and quit totally in October of 2023. I still remember that last appointment (Oct. 6) because it was my one chance (he only met with me 2x in 8 months) to confront him and ask him to PLEASE order a ki67 to gauge the aggressiveness of my tumor, which might give me the peace of mind I craved. I had learned that everyone but me in the entire U.S., it seemed, had gotten an oncotype, but I did not get one, as recounted earlier. I told my surgeon that I felt like a small child standing by the side of a frozen lake in winter and wondering if the frozen ice was thick enough to hold me, if I were to venture to cross the lake. My surgeon suggested that the ki67 would give me a % of recurrence risk, but "the minions" (as I called his interchangeable cast of tall, skinny blonde girls who were his P.A.s) routinely put me off when I would ask via the patient portal, and the patient portal was my only contact with the man. But now he HAD to meet with me--and remember: I was in a wheelchair from my knee blowing out. First, he completely refused to agree that the Anastrozole had a role in my semi-crippling, saying, "You're just old." Then, when I asked for the umpteenth time for the ki67 test, since he had long since refused to order the oncotype for me, he said, "I won't order that for you. You'll have to get someone else." And walked out! His minions rushed in to urge me to "make an appointment on the way out." I told Heather (her first name) that I couldn't make an appointment on my way out, because we were on our way to Texas for winter, as is our normal pattern, and I would have to wait till I got back, since I didn't know when we would actually be back in the Midwest. Imagine my surprise when I was sitting in our small house in an Austin suburb the following April (2023) and my cell phone rang and it was the hospital (Trinity in Moline) reminding me that I had an April 9th appointment. I did NOT have an April 9th appointment, and that really pissed me off---that they would just go ahead and put me down for some random time, It seemed that all they cared about was keeping me as a patient for the $. They didn't care if I suffered, or got better or got worse. They didn't listen to anything I tried to tell them, and my oncologist never discussed the other options for me when Anastrozole crippled me and gave me the worst pain I had ever had in 76 years of life. All they cared about was keeping me in line and keeping the $ incoming. Other than that, they couldn't even get my records right (they still have down that I ended my radiation sessions in May, when they STARTED in May and ended on July 16, 2022) and they coded the belated bone scan incorrectly, which led to me being on the phone with a horrific back and body ache talking to Medicare 3 times, to Des Moines (billing agency) once and to the hospital woman who answers questions online, because they never answer their phones themselves. (I saved those correspondences. The only thing they wanted to know were the names of the African-American girls at Medicare who had dug into my Medicare file with long delays and said they could think of no other reason for the refusal of Medicare to pay for this test other than that it had been coded wrong by the doctor's office.) It took from May of 2022 until March of 2023 to straight THAT out. It's been a loooong journey, and it is far from over. I now have to brace my left leg to walk at all, and I think the doctor who was my oncologist should be investigated for his horrible attitude and his illegal actions in regards to my deceased friend Diana. I wrote to the hospital (for the second time) and got NO response at all. Modern medicine, at least in the Illinois Quad Cities, now follows the mantra YOYO: You're On Your Own." Best of luck in your own journey. I hope to heaven that the radiation did the trick and I never have to take another toxic substance prescribed with a "one size fits all" attitude, when we both know that that is totally illogical and counter-productive.

Hi
Thank you for that information as I am just at the stage where I'm going to be put on a hormone blocker. I also have heart issues cholesterol issues and osteopenia with a fracture. So my oncologist had spoke to me previously after my first surgery and said tamoxifen would probably be what he's going to put me on and we are going to start at 5 mg so we will see what happens. Just wondering what did your doctor drop your dosage to.

Actually, my Texas oncologist (the one I like) RAISED the dosage. I only agreed to "try" Tamoxifen and began taking 10 mg. on April 23, and taking it every other day. That would be equivalent to about 5 mg. a day, or 40 weekly. I was on that dosage without too many bad side effects (other than a constant urge to urinate) for 2 full months, because I had read about the Italian Women's Study of 700 women who got by very successfully taking the pills in lower dosages. My doctor (oncologist in Texas) contacted me on June 23 to say that there was no clinical evidence for less than 20 mg. and I should move up to that dosage. He said that my confidence in the Italian Women's Study was misplaced, because those women had tumors that were "in situ" and mine had broken through. So, I followed doctor's orders and stepped up the dosage (as of June 23) to 20 mg. daily, which means 140 mg. a week, up from 40 mg. a week. The effect was (a) EXTREME exhaustion. I literally could only be awake and function for 3 hours a day. Nothing helped. There was no "resting up." My family and I had planned to drift down a Texas River in inner tubes, which was over 3 hours of being "up." I could not go, as I knew I would not be able to stay awake for that long without a nap. (b) the never-ending feeling that you have to pee, which went on on any dosage and (c) non-stop UTIs. The worst one hit me right before New Year's Eve. I had some Mexican amoxicillin and took that. Did nothing. I bought something from Walgreen's. Did nothing. It had now gone on for 10 days and I was becoming desperate. I called the female OB/GYN on whose schedule I had been for 9 months (vaginal ultra sound to guard against endometrial issues). She refused to see me because "I wasn't her patient yet." I pointed out that I had had an appointment to see her for 9 months, but that cut no ice. I got in my car and drove to the closest convenient card, but it was packed with Covid sufferers. (an upsurge in Texas) The office of the OB/GYN called me back and reduced me to tears with their refusal to help medicate me with something that would work. I called my oncologist, and he told me to go to the hospital and leave a urine specimen for testing, so I drove from one town to another to do so. I was given a second strong antibiotic. Took that and the feeling did subside, but was replaced by an overall "itchy" feeling. Had to go in, in person, and be seen (by a minion) and was told that the 2 strong antibiotics had given me a fungal infection (!) Was given 2 pills and told that one would probably do the job, which it did. I don't know about you, but I've had 2 friends who died from UTIs that went wild, I don't want to spend the next 10 years (hopefully) fighting UTIs, which, if they enter your bloodstream, can be deadly (especially in older people, and I'm 78). I also noted that my bloodwork from August 30 showed 10 things that were "off" since I began taking Tamoxifen. I had had bloodwork on March 7, 2023, right before I started on the 10 mg (in April) and everything had looked good. Now, everything looked worse. I quit taking everything from that point on, trusting that my 33 radiation sessions will have killed any errant cancer cells. If I were to have a recurrence, I'd try Tamoxifen again, but I would not take the full 20 mg. dosage, because that was too much for my system, whereas I think I could have stayed on the 10 mg. every other day. As it is, I am taking nothing and feeling good.

My dosage was dropped to 5mg/day. She was very clear that the 5 mg dosage has only been studied for in situ breast cancer, not invasive cancer, but something is better than nothing.

What has happened to you is so wrong on so many levels. I told one of my oncologists that cancer treatment is a crap shoot. He didn't contradict me. It is frustrating that you could spend ten years feeling miserable on Tamoxifen and then get cancer anyway. I was put on 5 mg by an oncologist because I had such a bad time on 20mg. It scared me but when I asked to try 10 mg, he said, "You know what will happen." Well, I didn't. I just felt that he was sitting there waiting for me to get cancer again so that he could go into high gear and do what he does best. Treat cancer. I actually liked this guy in many ways but I switched cancer centers, going to a major one not far from my home state. The oncologist, there put me on 5 mg one day and 10 mg the next, so slightly higher than what you were on. He referred to the Italian study although like you, it isn't the same cancer as that study. It seems bizarre that your doctor would use that study to say you can't stay on a low dose and my doctor says I can. My doctor referred to the "baby-Tam" studies. You can look it up. It seems Tamoxifen has only been studied at the highest efficient dose, not the lowest. But they are starting to find that a lower dose for different breast cancers is just as effective. However, I have gotten a lot of contradictory information both about this study and how long I need to stay on Tamoxifen.
It seems it depends on which doctor you see.
The way I look at it, is I am doing the best I can with a low dose. My present oncologist tells me "low dose is better than no dose."
I might end up with cancer again but at least I will have had quality of life in the meantime.
It's the same for you. You need to live.

And it is distressing that you have had such a hard time seeing an OB/Gyn when you have a problem. You weren't just asking for a "well woman" check up. I'm in New England and I hear the same horror stories here. ER doctors complain that they are over crowded with non-emergency patients but it's impossible to get care from non-ER doctors so we're forced to go to the ER.

I 'm afraid this isn't going to help you much. I just wanted to reach out to you and let you know that you're not alone.

Hi
Yes that's what my oncologist said. My invasive cancer was microscopic and minute he feels tamoxifen will be enough

I will probably be starting on tamoxifen very soon. I do to See my new oncologist next week.

Hi, Wellgirl,
Thanks for the feedback. I do think I may have misled you about the time I was "on" the adjuvant therapy drugs (although I re-read it and I think I put it down right.) Probably a mis-understanding. I was not on Tamoxifen for 10 years. I WAS on Tamoxifen, but only from April 23, 2023 until Aug. 30, 2023, at which point the side effects were so bad that I quit everything. I, too, wish my Texas oncologist had been cool with me taking a lower dosage, but I understand his point(s) about what the clinical evidence has shown to be effective. I have read about the "babyTam" studies and the 700 Italian women one, too. I, too, thought that (maybe) "something is better than nothing" but, quite honestly, I've given the pills (Anastrozole for 7 months; Tamoxifen for 5 months) a year of my life and I have failed to thrive while taking either one. Not only that, but putting me on an A.I. drug (Anastrozole) with my well-documented history of bone/joint issues and my over 20 years in the MOST study (nationwide study of same) was not only thoughtless, but almost criminal, as far as I'm concerned, since my left knee is never going to totally recover. When I read about how I should be out walking for exercise, I think to myself, "I'm lucky to be able to walk at all!" Despite that, I've lost 41 lbs., to date (Mounjaro and Ozempic) and joined a gym and am trying to be "healthy." I feel infinitely MORE healthy off the horrible pills I was told to take to "protect" me. (I often say I need protection from the protection!) I'm constantly amazed at how much conflicting information we are given and how profit-driven medicine seems to be today with YOYO (You're On Your Own) very much what I perceive the medical mantra to be in the 2000s. I'm hoping and praying that my Eternal Vigilance plan pans out for me. It's hard to get today's physicians/oncologists to even order tests, for fear of the consequences to THEM from Medicare. What is wrong with that picture? Everything.

Drug companies spend large sums of money for testing to get drugs approved. I have read that they use the highest dose possible with a level of toxicity that will gain approval by the FDA. We only need to listen to ads on TV to understand how many side effects drugs can have and that they are all toxic to some people at differing degrees. Higher doses are more profitable. There is no monetary incentive for drug companies to study the effectiveness of lower doses, so fewer studies are done to determine the efficacy 20mg vs. 10mg, for example. Therefore, nearly all women are given the same high dose, regardless of weight, age (older women metabolize drugs differently), or level of estrogen before taking tamoxifen or AIs which is seldom checked. Some oncologists are beginning to consider lower doses, but that seems to be the exception rather than the rule.

Agree… if I hear “ that’s what the research shows us” one more time I might scream.