HR+ and HER2-: Considering options with AIs or tamoxifen

I has osteoporosis and did an aromatase inhibitor for 5 years (letrozole). My docs did not want to do Reclast due to afib which was, at the time a concern with Reclast but is no longer. My bone density went down quite a bit and I fractured during COVID before I could start Tymlos.

I have done 2 years Tymlos and two sets of injections of Evenity. The Tymlos brought my bone density up and it is now better than before my cancer and aromatase inhibitor treatment.

I did a Breast Cancer Index test after 5 years of letrozole that told me that although I am high risk (our risk goes up with hormonal cancers I was told) there is no benefit to extending an aromatase inhibitor. Others do 7 or 10 years.

If you do Reclast or Zometa, your bones will probably be fine but those meds do reduce the effectiveness of the bone builders like Forteo, Tymlos and Evenity though they will still be helpful. So it depends on how bad your bones are and how fast you want to increase BMD.

Hi
I have been doing zoldronic acid infusions for the past 2 years my third is this year in June and my bone density is come up quite a bit so I don't know what my oncologist is going to suggest he talks about tamoxifen 5mg but I don't know. Just had a 2nd surgery this past Tuesday sentinal node surgery only 1 lit up so he removed it. Waiting for results. Suppose to start radiation in March

Oh if you have been on Reclast then maybe you can continue, I hope! I also hope the report on the sentinel node is reassuring. I am 9 years out...had grade 3, lymphovascular invasion, negative nodes. Good luck with it all!

Hi
What's lymphovascilar invasion? I had a lumpectomy it was dcis but when they did the pathology they found some invasive cancer so that's why they had to check my lymph glands. What kind of treatment did you have if you don't mind sharing

So you are probably fine and they are just being careful. With invasive cancer, however small, we all have those sentinel nodes checked.

I had a double mastectomy and 5 years aromatase inhibitor for ER+ PR+ HER2- mixed IDC, ILC, DCIS. Lymphovascular invasion for me meant cancer cells in the lymph vessels (others might have them in blood vessels).

Your node testing sounds just very precautionary.

If you are premenopausal tamoxifen is usually prescribed. Aromatase inibitors are for post-menopause.

Hi
My oncologist talked about tamoxifen because I've had a TIA I have a heart condition and I have osteopenia with a fracture compression in my spine. I am post menopausal but until all these results are back I won't really know what his plan is I have to have radiation in March unless something has changed

Hi
I had a lumpectomy clear Sentinel nodes dcis er/pr + her 2 - stage 0 they found a microscopic break in one of the milk ducts during pathology which my oncologist told me it does not change my diagnosis because it was infinitely microscopic. So I had my two surgeries I had radiation and I tried 6 days of tamoxifen the side effects I can't even describe there was no way I could function on this medication. Met with my oncologist and because I already have osteoporosis a spinal fracture and decided not to take any other meds. He did put my pathology into a program to see if the risk was higher without them and it was not so I wondered if anyone else having a dcis lumpectomy stage zero Er/pr positive her two negative have opted to do nothing after radiation or chemo.

I'm doing nothing after lumpectomy and trying A.I. pill (Anastrozole) and Tamoxifen for a full year.
I needed protection from the protection. (The Anastrozole semi-crippled me, put me in a wheelchair for 6 months and helped bring on osteoporosis from the osteopaenia I already had).

I've been through 3 oncologists, one in Illinois, one in Iowa and one in Texas.
I cannot tolerate the A.I. pills, as it attacked my bone density, sending it from -1.4T to -2.2T, which is borderline for osteoporosis. Two of my teeth split below the gumline and the repairs have cost me over $10,000 (and I had insurance that picked up only $1,500).

I, too, had 33 radiation treatments. And one of the 3 oncologists told me that they would not have radiated me if I had had my surgery in Iowa City, because "you're a woman in your 70s." (78) I did it, anyway, because I sensed that the idea of the A.I. pills "protecting" me would depend on whether someone with osteoarthritis and a very badly damaged left knee (bicycle accident) could tolerate a drug that is well-known to inflame (read PAIN) joints I was in a nationwide MOST study of osteoarthritic joints from 1997 to 2020, with constant MRIs of my left knee and X-rays of hips and knees and back at every appointment. My Texas doctors have told me that someone with my health history should never have been put on an A.I. drug. I believe them, having suffered through excruciating joint (and back) pain, teariness, mood swings, brain fog, dry eyes to the point of blurry vision, dry skin, insomnia and, ultimately, the blow out of my left knee that put me in a wheelchair from Sept. 15, 2022 until March of 2023.

I have lost 50 lbs.since this all started, which has helped my knee, the estrogen situation (fat cells produce estrogen and I was overweight) and my Type II diabetes. I' m not doing much (primarily swimming) but I'm doing something, and I am trying to stay on top of anything that might be a sign of spread. My original tumor (in dense breasts) was 11 mm., caught early, 1A, no spread, good margins, 95% estrogen positive, but the refusal of my Illinois oncologist to order an oncotype (which has been state of care since 2013) really put me in a bad way. It was not used to plan my course of treatment, because my Illinois oncologist, in his godline wisdom, simply said, "You don't need one." When it was run, it was 29, which put me 4 points above the cut-off for chemo, but that ship had sailed as 17 months had gone by.

My Texas doctor talked me into trying Tamoxifen, which I tried from April 23 until Aug. 30th. Like you, I found it to be awful, but for different reasons than the Anastrozole. On Anastrozole from Feb 1, 2022 for 7 months I had the most extreme pain I've ever experienced in my 78 years of life, which includes giving birth twice (one a 9 lb. child), 3 major surgeries, and lots of dental work. On Tamoxifen, I agreed to try 10 mg. and I ended up taking that only every other day because of the "BabyTam" studies I had read about (Italian women's study, 700 women, worked fine). I did the 10 mg. every other day from April 23 to June 23 (2023). It was tolerable, but just barely. I felt like everything from the waist down was drying out and I had to pee all the time. But I could have stuck with that 40 mg a week. It was from June 23 to Aug. 30 that EXTREME fatigue set in (could not be up longer than 3 hours) coupled with non-stop Urinary Track Infections. UTIs are nothing to fool around with at my age. One of "Charlie's Angels" who was a runner and an athlete and in superb shape died of a UTI at 62 and so did my best friend Nelson, who had had cancer surgery that left him with a colotomy bag and gave him frequent bouts of UTI infections. I took 2 heavy duty antibiotics to quell one right at New Year's Eve this year. It hung on for 2 weeks with burning and itching and it took TWO antibiotics to put things right, after which I had a fungal infection and had to take (yet another) strong drug for that. (I was told that taking 2 such strong antibiotics back-to-back can give one a fungal infection.) At that point (Aug. 30, 2023) I decided that my life was becoming hell on Earth and that quality of life was at least as important as eking out a few more years that might be spent in a wheelchair.

I feel normal now. I've been off all the pills since Aug. 30, which is 9 months. I just saw my Iowa City oncologist and he said I "looked good." My Texas oncologist is trying to track down the cause of elevated liver enzymes and ordered a CT scan with contrast, which was fine. I feel good and am planning 3 trips to Chicago for Seth Meyer, the musical "Six" and the Rolling Stones. I filed 34 film reviews in 8 days from SXSW. and I hope to continue losing more weight and feeling up to doing normal things that healthy people do. I'm done with the pills. If it comes back, I will figure that out when it happens. Life is too short to cower in my home taking toxic substances that "might" (no guarantees) "protect" me from a recurrence. Yes, I realize that my risk of a reoccurrence is 36% because I'm not taking anything and it would decline to 18% if I did take something, but the pills they seem to want me to take to "protect" me are a bridge too far for someone approaching their 80s. Put a fork in me; I'm done and practicing Eternal Vigilance.

As a P,.S., the Tamoxifen dosage was increased by my Texas oncologist on June 23 from the 10 mg. I said I would take to 20 mg. daily. I went from 40 mg. a week to 140 mg. a week (the normal dosage at 20 mg. daily), That was when things went down the tubes for me. Personally, I don't understand how or why there isn't titration of dosages to take into account a person's age and weight, etc. "One size fits all" does not seem right and yet the reason I was told to "step it up" was that "We don't have any clinical evidence that the amount you are taking now (10 mg. every other day) will protect you. We only have evidence for 20 mg. a day." He pointed out to me that the Italian Women's Study involved women whose tumors had NOT broken through, whereas mine was invasive. I complied, because I like my Texas oncologist, and I understood what he was telling me, but I also understand that "life is short and then you die" and I want to have as pleasant a decade or two as I can during the 15 years or so that I may have left. My mom was a 4-shots-a-day diabetic who lived to be 96. I hope to come close to being as active and sound of mind as she was right up until 4 months before her death in May of 2002.

Hi
OMG I am so sorry you have gone thru that. It's criminal. Glad you are on the mend so to speak. I am 8 weeks out from radiation I am struggling to get thru my days and getting depressed also living alone and having to take care of my mom with alzhiemers in the evenings. My sister and I split the days she does more than me. Did your brain feel weird after the tamoxifen. I feel alot of brain fog and still have nauseau. I am going to call oncologist tomorrow. Just an fyi regarding bladder and uti's. I have been having issues for 1 yr. My naturopath put me on a supplement for bladder called d-mannose it's been a lifesaver maybe check it out. Your story makes me calmer about my decision to do none of that