What if you have serious osetoporosis PRIOR to AI therapy?

I am going to be honest.. As a 37 year old, the side effects of endocrine therapy were awful. POOR QUALITY OF LIFE. *I* don't take endocrine therapy because I refuse to live with side effects that inhibit my quality of life.

If I was 80, I would be LIVID if anyone tried to push me to take those meds. Just let me live my life in peace!

Perhaps you should allow your mother to live the rest of her life in peace; drug free, side effect free. That is what I am doing.. Take vacations, enjoy the trips.. I am a Nurse, at 80 she is close to her life expectancy. I would want to live in peace, have you asked what SHE wants?

I'm in that situation right now. Will be seeing the Oncologist on Monday. I have Osteoporosis in my hips. Not only that I also have periodontal disease. Therefore, if I go on the Osteoporosis drugs I could develop osteochronosis (sp?) of the jaw after dental treatment. My Osteoporosis is mild, but it will get a lot worse on the Al drugs. I don't want to take tamoxifen because of the blood clot and uterine cancer possibility. Did your mom get an oncotype score? Mine was low - 6% recurrence with Al --- so it should only be 8 or 9 percent without the Al. My friends mom got IDC when she was 80 - she had a single MX and was not prescribed the drugs. She is 92 now and fine. Such a hard decision -- don't want regrets later, but going on the medication may also cause regrets. Let us know what you choose.

Salamandra, given when you received your score, you should definitely ask your MO why the TAILORx results were not used when assigning a recurrence risk to your Oncotype score. I don't think your results would need to be rerun; your score wouldn't change but the scale used to assign a recurrence risk would be the one with the TAILORx results that I included in my earlier post. Very curious why that scale was not used.

Jessie, the signature line for HereToHelpMyMom includes her mother's stats. Her Oncotype score is a 9, with a 3% recurrence risk, assuming endocrine therapy.

AliceBastable, it's true that many people tolerate endocrine therapy very well. The problem for someone older is that they are at greater risk to develop some of the more serious but less noticeable side effects, such as cataracts, blood clots/DVT and endometrial cancer (all risks from Tamoxifen), bone loss and cardiovascular events (risks from AIs). That said, if the risk reduction benefit is significant, there is no reason why a healthy 80 year old should not try one of these drugs. The question I asked in this case is why these drugs are being recommended for an 80 year old patient who has such a very low risk of mets to begin with, based on an Oncotype score of 9. In this case, the risk of serious side effects from the meds may be equal to if not greater than the risk reduction benefit of the meds. Certainly worth a discussion with the MO.

By the way, my mother was diagnosed at 80. She had a lumpectomy and then a re-excision surgery to widen the surgical margins. This was done so that she could skip rads. She never got an Oncotype score because her MO would never have recommended chemo, given her age and favorable pathology. She did however have a PR- cancer, which most likely would have landed her with an intermediate Oncotype score (in TAILORx, only 5% of PR- cancers had low Oncotype scores). Endocrine therapy was presented as an option but not pushed by her MO, and he was completely on board when she decided to pass. She's 94 now and has never had any breast problems since her surgery.

I hear that some people don't have any or little side effects from hormone therapy. But many of us do and it can be permanent. I was 53 with no health concerns whatever that chanced from taking anastrozole and exemestane. I definitely payed a price. Being 80 years old I wouldn't do it with a grade 1 or 2 tumor. This is my opinion you can take it for what it is worth. We all have different experiences we ALL should be able to share our experiences without being disparaged.

I think it is naive going into treatment without all the data.

I thought we were all just giving a range of experiences, not arguing (well, except with people who write off 80-year-olds as finished with life 😏).

I developed osteoporosis after only six months on Anastrozole and Exemestane, while taking fosamax for the last two. So I am off the AIs and left to deal with my bones. The two percent difference in recurrence isn’t worth The damage that has been done for me.

My mother had a lumpectomy at 94 and the cancer recurred at 96. She had no rads or hormone therapy, but it wasn’t the cancer that ended her life.

So each situation is different and one must weigh the risks and benefits for themselves. Best of luck making the right decision for your mom.

I think you're OK to wait. Just for those 2 reasons: See the dentist first, and be sure her insurance will cover the Reclast treatment. I was 5 months getting started on the AI.

I am 58 and already have an OS diagnosis in left hip, and my spine is osteopenia. MO wanted to start Prolia shots, but my insurance denied the claim stating it is not an approved treatment for OS. I don't think there is one! All this medicine does is trick your bones by making your body do something it was never intended to do (Prolia binds to RANKL, a protein that is essential for the formation, function and survival of osteoclasts, the cells responsible for bone resorption. Prolia inhibits osteoclast formation, function and survival thereby, decreasing bone resorption and increasing bone mass and strength of the bone). Reclast is a bisphosphonate but essentially is doing the same thing. Inhibits the osteoclasts.

Currently, I am not under any treatment for the OS. Just whatever I can do to keep my muscles strong around my bones and doing weight bearing exercises. It's also important to work on balance to lessen being a fall risk.

Then, what happens when we're done OS treatment? I'm reading more and more that the rate of bone loss is greater coming off the drugs -which could put us in a worse condition than where we started. I can't get another DEXA until the end of the year so I think I will push it into 2020 when I will most likely have different insurance coverage and I'll decide what to do from there. Good luck to you and your Mom.

I'm 66 and was diagnosed with severe osteoporosis a couple of years before my 2016 stage 1b grade 3 ER+ breast cancer diagnosis. The risk of jaw necrosis and sudden fractures from Prolia and the other recommended bone drugs frighten me. So both before and after going on Arimidex (which I chose over Tamoxifen, in order to fight the cancer more effectively), I've refused to take the bone drugs and tried to find natural ways to protect my bones. I've been on Arimidex for over 2 years, and my diet is excellent, but I've been lazy about exercising. Facing my continued opposition to Prolia, etc.as well as my fears of endocrine disruptors in a host of products (including all dairy products and cans lined with BPA, BPS or other plastics/chemicals) my oncologist is now suggesting a switch to Tamoxifen. She says that unlike Arimidex, which stops my post-menopausal body from producing estrogen, Tamoxifen will prevent ANY estrogen in my body - whatever the environmental or food source - from binding with cancer cells. She also says that although Arimidex is slightly more effective than Tamoxifen in preventing metastasis, it does NOT increase overall life expectancy.

Aside from ongoing bone loss, which I know is a very serious problem, I haven't suffered severe side effects from Arimidex. And through Arimidex Direct, I'm able to order the brand-name drug, which I believe (though don't 100% know) is manufactured in the U.S. I don't even know if it's possible to order a domestically produced Tamoxifen.

Any thoughts or suggestions?

I’ve had three reclast infusions for three years straight, they increased the density each time but Femara knocked it down. My dentist said the necrosis is not a problem unless you have an extraction or other major work during the time you are treated - so I had a root canal three months before the third infusion. No problems. I will be getting a fourth infusion as it’s been three years. No fracture since the treatment started about six years ago.