Aromatase Inhibitors: Did you decide to go on them or not?

Thank you for the thoughtful response and well thought out. We have been through much of the same thought process. My ER and PR receptors are considerably lower than yours. My doctor is monitoring every six months and rotating between MRI and mammogram. If I do choose down the road to add anything, I will also add low-dose tamoxifen. The recent studies have shown it is very effective and it sounds like the recommended dosage could be changed soon. Best wishes to you!

@wyowyld I have a similar risk level as you, although some differences in type cancer. I’m 70 and am thinking along the same lines, I want to maximize the next 10 years while I’m still *young* 🙂
My latest beliefs after reading current research is that the radiation should kill the cells it touches, but there may be wayward cells that will continue to grow. It often takes years for a cell to get to a clinically significant size, so I’m going to be extra vigilant at 5 years, and then about every three years after. The hope that it will be seen at an annual scan - but that 3 years may be when it’s grown just large enough to be viewable.

I did not take the option for AIs. I had 100% ER and 95% PR so I decided I’d try tamoxifen. For me, the AIs spelled trouble as I’d already had de Quervain’s tenosynovitis twice in my hand and plantar fasciitis in my foot mutiple times. As well as osteoporosis. I didn’t like the cut-off of estrogen in other organs that AI causes, but just like chemotherapy, if the risk is high enough the side effects might not be pleasant but its doable in order to control the cancer. The choice of taking an AI is definitely right for some of us.

Tamoxifen was a problem at 20 mg but I’m tolerating 5 mg pretty well, I think, I may even stay on beyond 5 years as I see other benefits that the estrogen-as-agonist is providing. But, because of all the scans and issues that have occurred since the cancer showed up there are some things that are now on my radar and I’d want to make sure these aren’t being made worse by tamoxifen. I regularly check new research to see if tamoxifen is driving the adrenal cysts, the mild white matter hypersensitivities in my brain, the large increase in cherry angiomas (which I don’t care how benign they say they are - it is still angiogenesis and something is pushing the growths - never a good thing).

Boy, I *talk* a lot. Sorry for the long read.

I'm 77 and decided against radiation. Had 2 lumps and 2 nodes pos. ER+ onco at 19. I decided to just do Anastrozole. I don't have any clear side effects. A hot flash every now and then and I feel aches and pain that are tolerable,but can't attribute then to the drug.Could be just my age.
Just had my first bloodwork and all looks good. Been taking since June 2024.

I have less than 1cm ER+, PR+ HER - tumor in mastectomy breast. They think a new primary tumor after mastectomy 22 years ago. Awaiting lymph nodes diagnosis. My current tumor is small < 1cm. I am 70 years old. Have significant back issues and proven osteopenia. Surgeons have pushed hard for hormone blockers, I have resisted. Suspect they would want to add diphosphate meds (Fosamax, Bonita, etc) to booster my bones. My dentist said I would need to get as much dental work as possible done before starting biphosphates as they have a side effect of possible jaw necrosis. Additionally the medication stays in your bones for 10 years or more so even if you stop the drug the risk of jaw necrosis doesn't go away. I haven't seen oncology yet but I am pretty determined that I am open to radiation but not the hormone blockers. It has taken 2 years to adjust to my back pain and I don't want more pain. Have darling grandchildren to play with. I will listen to oncologist. I declined tamoxifen 22 years ago, was raising 3 active children and didn't want the blood clot risk. I should say I don't react well to medication sometimes so I am abundantly cautious.

I did extensive research, and talked to my oncologist about it at length and on several occasions. My ILC was 7mm stage 1A, no mode involvement and caught early. I had the genetic testing and fortunately do not have any genetic concerns, and cancer markers were very low. I had a lumpectomy and radiation. My risk of recurrence before radiation was less than 5% after 9 years. My oncologist told me that the AIs would decrease my overall risk of recurrence, after radiation, 1%. I have chosen to go for quality of life at this stage and am not going to take them for now, and hopefully ever. I am approaching 70 and figure the next 10 years will be the most active I've got. I understand my risk factors, and am willing to take a little more risk to maintain the quality of life I have. It's a tough decision, but I have complete peace around my decision, and know it is different for everyone. Good luck!

In Japan, they prescribe a prescription-strength use of Vitamins: K2 MK4 and K2 MK7, A & D. Google and you will see the amounts.

First, I'm not going to share all the private information some seem to advocate for here. Even if 2 people have identical diagnoses, scores, etc. they are still individuals with millions of variables. Getting back to the general question of going on AI's or not I can tell you that I was on Letrozole without issue for 10 months before surgery. Then after 7 months of chemo and radiation I was switched to Anastrazole and started having side effects within 6 months. After crippling knee pain developed I switched back to Letrozole at half dosage and added collagen supplements. That greatly improved the joint issues, but I found myself struggling with other chronic pain, insomnia, cognitive issues, depression and anger issues, high cholesterol, fatigue (plus more that I only suspect). Then last November I was given the okay to take a 30 day vacation from this drug which made a significant difference in these issues, but going back on the drug found the big, black cloud descending quickly although it took several months for the insomnia to return. Three years in (out of suggested five) my oncologist has given me his blessing to find a schedule I can live with including stopping altogether. He'd prefer I stick it out for the full five years, but understands quality of life. Just having him give me the green light to take back control is everything. Four days into this current time off and I feel like a new person. Right now I'm thinking 2 months on, 2 weeks off. Hopefully this will be enough.

@ginip you are dealing with a quite small lobular in situ. What was your Oncotype, if you had one? Do you know the risk reduction you get from anastrazole? Is it small or is it significant? I also wonder about risk reduction per year (since you have done 1+ years). It sounds like you have a doc who listens to you and is flexible, willing to personalize treatment. I hope you will let us know if you decide to stay off or go back on!

Ok! The problem here seems to be that we soldiers are fighting the necessary prescribed battles and literally begging for the hierarchy prescribing our future to focus, to listen to we soldiers in the trenches and help us get a grip on some definition and parameters on these very similar situations that are being dealt with in so many different ways.

I was 78 at the time. I have had a very similar experience as you. 6 mm invasive lobular carcinoma in situ. All margins were clear and negative for invasive carcinoma.

I was prescribed Anastrozole for 5 years. I had no notable side effects for the first year and then became aware of a variety of side effects of which some were manageable and others began to interrupt my quality of life and make me consider if I would need to quit my p/t job and made me feel vulnerable in my daily life involving my legs in general. I had NO issues prior to taking Anastrozole.

After back and forth with the oncologist and nurse oncologists I am currently on a 3 month hiatus. One month into this hiatus, subtle side effects have disappeared and the leg issues have ebbed significantly. My research indicates this might take longer to not be an issue. I am positive that the next 2 months will be significant.

Also, I was aware that brain fog was a possible side effect but had no idea how much it had effected me until I started this hiatus. It literally was like walking out of a fog. I was so aware and so grateful for that!!

This case is not closed for me! I will probably be prescribed Letrozole at the end of 3 months that will throw me back into what I call my intricate Sophie’s Choice syndrome.

Maybe prescribers went through this when mammograms were first offered as a path to breast Cancer diagnosis and prevention. Maybe it would help us if we knew we aren’t out here on this tree limb alone waiting so faithfully for how this possibility for a Cancer free life can be refined and be more specific.

The definition of pragmatic is:
Dealing with things sensibly and realistically in a way that is based on practical rather than theoretical considerations.

Is this a fair expectation for those prescribing us at this point?!

@mdr3 I cannot "like" your post enough. I feel that we should all remember to post our type of cancer, size, stage, grade, ER PR, HER2, Oncotype, treatment and date of diagnosis on here. I have only done that when relevant and am going to start! People are reading these forums in a variety of situations, possibly lurking, and may be swayed by what we post when our situations may be very different from their own!

diagnosed 2/15; stage 1, 1.5cm, grade 2 or 3 (depending on hospital), ER 95% PR 80% ki67% 20, lymphovascular invasion (focal), Oncotype 8; two mastectomies (flat), 5 years letrozole; Breast Cancer Index indicated 5.7% risk and no benefit to extended therapy; Tymlos for bones