Decide against aromatase inhibitors?

I’m tearing up as I’m reading this. Thank you for posting.

I have severe bone pain. The gaslighting, the apathy…. All of it is WILD! It makes for a very lonely journey.

I’ve been using chatGPT to try to understand the mechanism behind the pain as my Oncologist is NOT helpful. Maybe it’s the acute menopause with the osteopenia exacerbating the pain. Your wife and I have that in common. Interesting to consider.

My pain is deep in my thighs and started with my first chemo treatment. It feels like the back end of a Charlie horse that doesn’t go away. It radiates up into my hips.

I’ve done a Nuc Med bone scan to check for metastasis. I’ve done Dexa bone density scan as well.

I’m SO thankful that the first scan did not show metastasis. My Dexa did show early onset osteopenia. I’m 43. The oncologist told me not to worry about it. Lol

I’m in the midst of weaning myself off of endocrine therapy post mastectomy, chemo, reconstruction. I was taking Letrozole and also a Zoladex shot.

Women are TOUGH!!!! If half of us are forgoing the “best treatment” because of side effects something is VERY WRONG!

Thanks for your note. I'm sorry to hear you are hurting. My wife was told that her pain was 'unusual'. The oncologists, in our experience, may know how to cure a cancer but they sure are limited in their understanding of pain and that you are actually a human being. We were told- Oh you're so unusual. Now we have a club of two, but I guess it will continue to grow.
I have been told by three physicians that osteoporosis doesn't hurt. The is mostly true. But osteoclastic activity, which is the breakdown of bone caused by acute menopause and some of the anticancer agents does. That's in the literature. As a physician, I can read the medical literature. But nevertheless you might find 'googling' various words that you can access to articles that you might be able to understand, but at a minimum accessing sites written for the lay person.
The only advice I can give is that if you have breast cancer at 43, don't ignore your oncologists advice on long term anticancer agents to lower the risk of recurrence. Get another opinion if you're not happy.
It is critical to monitor bone health throughout this process. It's critical and your onco-endocrinologist should be able to help guide this. You have a long life ahead of you so it is so critical to make the right choices. Sorry you had to join the pain club, hope it abates.

I had ILC and after two lumpectomy procedures and radiation I opted out of estrogen blockers. However, now five years later I have been diagnosed with metastatic bone cancer. It is in my spine and pelvic area. Maybe I should have taken the recommended therapy. I’m now taking Anastrozole. So far it has lowered my tumor markers a little.

Perhaps it would not have made any difference. In conjunction with other treatments, it should help now. Sorry that you had this happen, hope that you keep it at bay for many years.

God bless you!

@luckbme
86 youre swimming 4 days a week for 45 minutes and on the treadmill 30-35! Wow! More than Highly impressed!
Youre an Inspiration!
Girl, keep doing what youre doing!
You dont need any more exercise going to a doctors office!
🍷🍷🍷🍷🍷🍷🍷💃💃💃💃💃

So sorry it happens to you! The metastasis could have been caused by dormant cancer cells that decide to wake up. That being the case, then even if you had taken AI, it wouldn't have made any difference. I pray you will be in remission soon. Hugs.

I had DCIS 15 years ago and had a lumpectomy and radiation. My oncologist wanted me to take tamoxifen but I declined and took Evista instead. Two years ago, my breast cancer returned but was only stage 1. I had a unilateral mastectomy and started taking Anastrozole an aromatase inhibitor. No radiation since that breat had already been radiated with the DCIS. I’m 74 years old.

@jerold1
@srussell

Re: Aromatase Inhibitors, osteoporosis, and joint pain.

Had knee joint pain and burning leg pain.

I have ILC, had lumpectomy and started Letrozole 2 1/4 years ago. Breckinridge Letrozole.
Horrible total hip pain at two year point, up all night and went to the bathroom 7 times. (Letrozole causes you to urinate more but not that
much. ) Switched to Accord Letrozole and lasted 3 months on it. Was having muscles give way above and below left knee.-( Possible Letrozole side effect.) Now on 3 months off.

Doctors do not know or tell you any remedies…
I took Glucosamine Chodroitrin, plant collagen, collagen with boron and frankincense, generic Claritin, melatonin, tart cherry capsules and magnesium, turmeric, COQ10 and Reservatrol.
Took vitamin D with vitamin K.
**Seems it is known that you need the vitamin D with K to build bones. Magnesium not at the same time but it is needed with D and K for same reason.

Clear all these through your Dr.

Yup 5 cancers. Two were in the same family those 2 were anal (surgery, chemo radiation) and cervical.
The others were, thymoma attacking my heart (surgery and radiation). Skin cancer (surgery) and now breast cancer (idc) just surgery so far.

I did do the DNA test, I was negative for mutant cells. So,they don’t know why.