I'm doing ok for the moment. I'm 7 months out of treatment and my last 2 PET scans were so-so. They both showed something new and strange which are being followed, but they don't think it's new cancer spots so fingers crossed. I was really worried about the muscle and joint issues when starting the AI because I already have lots of muscle and joint issues that were present before cancer and I'm in worse shape now due to multiple surgeries that have damaged other new muscles and nerves that weren't a problem pre-cancer, but my only noticable side effects are the hot flashes and insomnia got worse.

Anyhow, get that 2nd opinion and consider trying a low dose AI. Side effects show up pretty quick so if they don't agree with you then you just stop taking them and move onto something else. It's really a hit and miss thing with what will and won't work for each person.

It is stressful trying to figure out what the best course of treatment and meds you should take. I can understand your AI hesitations since you already have bone issues on top of your other issues. Your doctor can give you your odds both with and without Tamoxifen, she just doesn't want to. I read another chain of posts where you were describing what's going on with your doctor and I definetly think it's time for a 2nd opinion with another doctor that would work with you and has some bedside manners. I can't remember who responded a bunch of times to your post with info about the AIs and looking for a new doctor, but she did give you a bunch of great and valid information to use and make the best informed decision for yourself. I've learned over 9 years of being a cancer patient that you really need doctors that you can talk to and work with. I fired my original breast cancer and OBG oncologists because they made multiple stupid mistakes with my care and I could no longer trust either of them. I've personally found that you are best off going to a hospital system that teaches and does research because they are well funded, tend to have the latest and greatest machines and technology, and tend to have more knowledgeable doctors that are aware of and using the newest treatments available.

I remember when I was reading about Tamoxifen way back when that it does have a long half life and stays in your system for quite a while after you stop taking it. The AIs seem to leave your system quicker than the Tamoxifen. I'm on an AI and a CDK inhibitor and I take the smallest dose of each one because I'm missing half a kidney and have kidney disease as a result of that. There are studies out there that show low doses of Tamoxifen and AIs work well enough to be used for preventing cancer recurrences. Some women end up getting cancer again after they stop Tamoxifen or AIs because once their body starts to produce estrogen again it feeds any stray cancer cells that have been hanging around dormant and/or feeds new cancer cells that develop.

I believe when hormone positive cancer reaches stage 4 they put you on a different injectable medication instead of Tamoxifen or AIs because the med you are taking is no longer effective if you reach stage 4. I know when my mom had stage 4 breast cancer they would keep switching her meds around so when one would stop working they would move on to the next med. She passed in 2012 and there has been a lot of progress made since that time so we have more options and treatments available now for breast cancer patients.

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I’m so very sorry for all of the pain you endured for so many years. My prayers of support go out to you! I am perimenopausal at 56.. & I have osteopenia which is why the Tamoxifen is recommended. AI is worse for my bones.. also, my dr refuses to give me what my personal reoccurrence can be without the Tamoxifen. She says there aren’t any studies that support it. Only studies of with Tamoxifen, I have a 5% reoccurrence in 10 years. I already have osteopenia, insomnia, hot flashes, weight gain, genetic hair loss, anxiety, depression & mood swings I feel I will get the joint muscle pain as well.. won’t know til I try it but what I understand is 3 out of 4 women quit & don’t take the 5 years of Tamoxifen b/c they can’t tolerate it… so by quitting after say 3 months. 6 months or a year, do you still get a later of protection? Also, there are women who get cancer anyways despite being on it for 5 years.. also, will ask dr regarding if the cancer already metastasized to say my brain liver or uterus, will the tamoxifen help in that instance?? Idk…I feel like I can try it and see but stressing about it..again, so very sorry for all that you have endured. I pray that you are doing better now.
🙏🏼🙏🏼🙏🏼

I was 50 when diagnosed with HR positive, HER2 negative breast cancer. I had a double mastectomy. I too was stage 1 and had a low oncotype score. I didn't need chemo or radiation. I was pre-menopausal. My doctor suggested Tamoxifan, but I was high risk for blood clots which is a fairly common side effect so I refused to take the Tamoxifan. A couple years later I was diagnosed with endometrial cancer that was also HR positive and HER2 negative, stage 1, and had a hysterectomy and went into menopause. Taking an AI was not suggested or offered for the endometrial cancer. I should have been put on an AI after being diagnosed with a 2nd ER positive cancer and I wish now that I would have insisted on being given a prescription for an AI. The endometrial cancer came back 3 times and I had chemo once and radiation 3 times and still I wasn't offered an AI. Fast forward 7.5 years and my breast cancer returned. This time it was a new and different cancer, but still HR positive and HER2 negative and it was a stage 3C and very aggressive. I went from nothing abnormal showing on a PET scan and 3 months later at my next PET scan the new breast cancer was there, growing quickly in a couple of spots on my chest, and had invaded 2 lymph nodes in my chest and 14 of 16 that were removed from my armpit. I ended up having 3 surgeries to remove the cancer and 18 lymph nodes with reconstruction, but had difficulties which is why I had 3 surgeries. Next I had 8 rounds of chemo and 20 radiation sessions. I am now on an AI, Letrozole, for the rest of my life and Ibrance, a CDK inhibitor, for 3 years.

It's hard to tell who will have cancer return and who will deal with it only once. It's also hard to weigh your options if you are low risk and to decide if you want to take an AI or Tamoxifen or go without. All of the drugs that stop hormone production have side effects, but not everyone will have problems. For me I only experience hot flashes from the AI and my insomnia has grown worse, but I don't have any of the joint or muscle side effects. You can always try any of the drugs and if you have side effects that are intolerable you can be switched to another drug that might agree with you better or stop taking the drugs altogether. Has your doctor suggested taking an AI instead of Tamoxifen? AIs are typically used more often for women in menopause than the Tamoxifen.

Your oncologist should be able to look at all the characteristics of your personal cancer and give you your 5 year recurrence and survival odds based on taking Tamoxifen or an AI or not taking any type of drugs. Ask your doctor about your odds and about taking an AI instead of Tamoxifen and see what they say because that may make your decision easier to make. Good luck to you with whatever you decide ❤️

It is 15mm, no lymph nodes affected. I’m perimenopausal. 56 years old.