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

I am 69, IDC (4 mm) and DCIS (2.5 inches) with SMX, negative lymph nodes, clear margins, negtive genetics. No Oncotype DX done because size of IDC was less than 5 mm. I am on anastrozole 1 mg for 2 months now. I have a lot of aches and joint pain (esp knees) and extreme fatigue by mid afternoon. The fatigue and joint pain are affecting my quality of life as i like to be busy but really can not go after a certain time of day. i am hesitant to switch drugs because if they all lower estrogen levels, i assume i will feel the same fatigue and muscle aches and joint pain. But i am tempted to cut the pill in half or take 1 mg every other day. I excercise regularly, take tart cherry juice etc. But the lousy feeling (fatigue, pain, aches) are discouraging to me and make me feel as though i am 'sick' when i should be focusing on being healed. What to do??

Tamoxifen may not be recommended for postmenopausal women for various health reasons including risks for:
-Uterine cancer, a history of PCOS, possibly the number of years of estrogen including early menarche and HRT, endometriosis, any sign of uterine hyperplasia
-Deep vein thrombosis, a history of any thrombotic events or health issues related to thrombosis
-while tamoxifen can be cardio-protective in some areas, I think there are other heart conditions may be an issue
-it’s affect on the hypothalamus-pituitary-adrenal axis, prior health concerns in this area may increase risk of problems

Research shows tamoxifen induced risk for uterine cancer and DVT is low if health history indicates the original risk (prior to tamoxifen) is low.

AIs do have a little better outcome than tamoxifen for postmenopausal women and are recommended as a first line med by most doctors, but I felt the little higher risk wasn’t enough for me to take an AI with my health history. My oncologist gave me the choice for either.

My two cents on headaches, is that estrogen modulates the quality of our vascular system and very low, or high, estrogen may be a factor in vascular headaches.
I had headaches with the higher dose of Tamoxifen. My theory is it was causing vasodilation in my brain or meninges (tamoxifen can act as an estrogen agonist, promoting action in the brain). Although I do not have daily headaches with the lower dose, I now need to use a nasal spray antihistamine (vasoconstrictor) in the spring and fall when air pressure systems change and allergic inflammation abounds. Again, my theory, is that my vascular system is no longer supple (part age, part tamoxifen messing with estrogen) and I have to counteract the effects of the med.

It’s important to have your doctor evaluate the risks of tamoxifen vs AI. They can compare health history, current risks of developing disease. And then - how does hormone treatment affect your individual health status.

It is very confusing when we try to figure out what is best for us. Some of us have diabetes, autoimmune diseases, heart disease, neuropathy, adrenal insufficiency, polycystic disease, thyroid issues . . . the list goes on. All these factor into how a hormone therapy may affect us.

Before I was diagnosed with cancer and started Anastrozole I was switched to Amlodipine Besylate 5mg for my blood pressure and it has been low ever since even with this med. Family history of blood pressure and mine was never normal so it’s been a God sent for me

I have been on amlodipine for years, plus candesartan, a diuretic and beta blocker.
Developed hypertension in my late 40s. Cardiac stent age 58 and ischemic heart disease.
My pulse is fine. B/P in the AM is fine...as the day progresses blood pressure goes up and I develop a headache. Every day. Beyond annoying.

Can you explain the problems you experienced at 20 mg of Tamoxifen? I'm about to start, and the Doc wants me to start at 20 and go down if problems. But I've been down that road before, and am going to be more independent with my little pill cutter if needed. AI's gave me lots of problems.
Thanks,
Patty

Thanks, this information is very helpful!

Yes, by the 3rd month on Fulvestrant (another hormone blocker) the slight aches & pains in joints & muscles that had been slight turned severe & I just couldn't deal with it. So am switching to Tamoxifen, low dose, & hope that is not a side effect of it.

Interesting! I didn't think tamoxifen was given to post menapausal woem but after your post i looked it up and it is when post menapausal women can not tolerate aromatase inhibitors (like anastrozole). if my symptoms get worse, i don't think i will be able to tolerate it. Good luck with the tamoxifen!

On 20 mg Tamoxifen, the first few weeks I had warm flashes and more moody. My eyebrows thought they might want to be a unibrow 🙂 Extra brow hair grew more in between my brows (not a lot) and some above my natural brow. As the body adjusts to the change of hormones, it leans toward a higher level of testosterone - ergo the unibrow. It was easily tweezed away. By 6 weeks, I seemed to settle into difficulty with thermal regulation- no hot flashes, but if I overheated, like in a hot car, or standing in Texas summer heat, my body took a longer time to cool off. My hair thinned some. I was more likely to cry at sad movies. I do have a slight vaginal discharge, a thin milky-like substance. It is caused by an pH imbalance from the tamoxifen, it does not bother me. I have not had any vaginal infections. I do not douche.

Before the cancer, I had vaginal dryness, vaginal atrophy, and osteoporosis. After taking tamoxifen, the vaginal issues were reversed, no atrophy. Tamoxifen can act as an estrogen agonist (promotes estrogen like action) in other parts of the body outside of the breasts. With taking Reclast my DEXA scores at the hips have improved to osteopenia, my spine has improved but is at -2.5.

At 3 months on tamoxifen I started having headaches 24/7. Not migraines. My regular doctor went through every possibility for headaches, found nothing, and I had a brain MRI. The radiology report said they found nothing remarkable (thank you very much!!) But that was good news. I saw the neurologist on staff at the cancer center and the conclusion was that the tamoxifen was causing the headaches. I changed to 5 mg, and the headaches have gone away.
Interestingly, I’ve noticed more head hair growing in. I have this fringe most noticeable in front of my ears, about 5 inches long. That’s about the right length for the time I switched from 20 to 5 mg - when maybe the higher testosterone dropped.
I have not had any bone or joint pain on tamoxifen. I started on tamoxifen at age 68, three years ago.

My oncologist encouraged tamoxifen when I made it clear no AIs. She was unhappy I would only agree to 5 mg Took it for 3 weeks. Had BP issues so my BP med was increased. I couldn’t get rid of a low level HA so I stopped it. I think about trying it again but I feel like it is poison for me. I am 70 so if I were younger maybe I would persevere. I had a recurrent IDC of L breast 22 years after mastectomy. Oncotype score was 8. MDs didn’t recommend radiation.