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

I’m on tamoxifen and have high blood pressure, there was no noticeable difference in BP with the tamoxifen. I had labile hypertension before this all started, they like to call it “white coat” syndrome because I’m always high in the doctor’s office. That, I believe, is from low estrogen for some of us - which tracks with the problems you had on AIs.

I started on 20mg, but am now on 5 mg. I cut the pill. I won’t take 10 mg every other day - might work okay, but when trying to lower tamoxifen (before protocols changed to allow 5 mg a day) I was taking 10 mg every day and still had headaches, and I’m afraid the fluctuations of every other day will bring headaches back.

Tamoxifen doesn’t cut well - I’ve tried 3 different pill cutters. The pharmacy refuses to cut it. I now use a single edge razor blade, and put the pill on a small pile of paper, then cut. The blade is very sharp, and the softer surface of the paper seems to give enough so the pill doesn’t crumble as much. I don’t get it precisely in half, but no worries. In two days, I get the full amount, maybe a little less one day, maybe a little more the next. The half life of tamoxifen is 7 days, so there is always a quite high residual amount in my body.

I tried both Anastrozole and Letrozole sequentially for about 4 months, trying to find one that wouldn't affect my BP. Had moderately high BP before. The AI's both slowly raised my BP, until finally they caused me to develop Labile Hypertension. I quit them immediately. You do not want this, it makes treating your blood pressure a guessing game & affects whether you can take anti-inflammatories in the future (I can't). Next we tried Fulvestrant shots for 4 months, another type of hormone blockers. This also made my BP wacky, ended up giving me a leg rash, muscle & joint aches & pains. It DID shrink my chest wall tumor by 2/3, so that's a great thing. I tried to talk the Doc into a lower dose since I'm med sensitive, but she said no, we can't do that here at the Cancer Ctr, for FDA approval. I said that's it, can't deal with the leg pains. So now I'm going on to Tamoxifen, but am going to use my pill cutter to take the dose I think my body can stand, slowly upping it. She doesn't know that yet.

Nana loves - I’m sort of in the same boat. Was diagnosed with IDC on my left breast I March, 2023, stage 1, grade 2. Did double lumpectomy (had two small tumors), clear sentinel lymph nodes, did radiation but chose not to do the AI’s. This year I was diagnosed with a 1.2cm same type of tumor I my right breast. My surgeon did not check sentinal lymph nodes - said it was no longer necessary because they could tell if there was a malignancy by the mammogram. Had another lumpectomy and radiation but still haven’t decided on taking AI’s. I had no recurrence in the left breast. I’m 79 years old and have read so many horror stories from people who have taken them - fatigue, muscle/joint pain, etc. I’m scared to take them but scared to not take them. Already have a lot of joint pain because of osteoarthritis in my knees among other things and I worry about the quality of life I would have if I take the pill. My Ocontype Score was 7 and 3. Don’t know if this helps you, but would love to hear from woman who did not take the aromatease inhibitors.

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!

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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.