AI - bone loss - fracture history - joint replacement needed

do tell more! I have broken 6 bones since Femara, and have 2 more years to go, my Dexascans are normal, but just simple falls snap bones. Had my first Zometa last month. Someone suggested bio identical hormones testosterone pellets, but being PR+ that feeds the cancer, no? I am not surviving, I am enduring

I am currently recovering from total bilateral knee replacement surgery on July 7th. I'm only 51 but apparently the aromatase inhibitors did a number on my knees.

I was diagnosed with BC in 2010 and after my mastectomy and radiation was started on tamoxifen. As far as how I felt on tamoxifen, I had a few side effects but was still able to exercise and ride my horses. I did get a blood clot and uterine thickening so I had to have a complete hysterectomy and was switched to arimidex. Within two months of starting arimidex, I started having severe pain in my knees and exercise got progressively harder to do and eventually I could barely get around. My MO tried switching me to aromasin and then to femara to see if I could tolerate any of them. Finally, last July I was taken off of them. I thought as the drug left my system that everything would return to normal but it never did. I had a super minor slip on ice this past January and I ended up on a walker. A MRI was done on one knee and when I was referred to an orthopedic surgeon I told him that he better look at both knees. Sure enough, I had end stage tri-compartmental osteoarthritis in both knees, meniscus in both knees were shredded and ACLs torn, my joints were completely black from being bruised from walking around bone on bone for so long. The OS said that aromatase inhibitors are not only hard on bone but on ligaments and tendons too.

I had a bone density test done after I had been in AIs for two years and they showed normal for my age. However, the bone density scan is taken from mid thigh to just above the pelvis so it never showed the damage going on in my knees.

I'm happy to answer any questions you might have. Total knee replacement surgery is tough, I am not going to lie. I did both knees at the same time because they were both so bad I figured that a new knee with either of my damaged knees would have trouble doing the physical therapy I would do after surgery and hold back the new knee. My surgeon said that I was a good candidate for doing both knees at the same time so I went for it. There is pain with the surgery but I can tell it is different then how the previous pain. I'm doing better every day but it still is not a quick recovery. My husband can't believe my legs finally can straighten again.

Something that I did before surgery was to have a metal allergy test done. My allergist insisted on it. Thank God for that as it turns out I have a nickel allergy and the original joint that they were going to implant had 1% nickel so my surgeon had to use a different joint.

An interesting side note is that while I was in surgery, my husband was in the waiting area and there was a women in there waiting on her dad. My husband told the women that I was getting both knees replaced due to taking aromatase inhibitors. He said the women held up her hands and she showed him that her hands were all knarled up from taking aromatase inhibitors.

Yes, the surgery will be worth it. I can't wait to be able to walk pain free. I will finally be able to walk my dog, dance with my husband and ride my horses again. Not long after surgery, the hospitalist told me I was already walking further with my new knees than I could before surgery albeit with a walker.

littlebird75 - How long have you been off of AIs? The reason I ask is that a friend told me about one of her friends that needed back surgery but was on AIs. She said her friend was told she has to be off of AIs for at least six months to do three surgery because AIs slow healing. Not sure if this is a hard fact when dealing with AIs or just that surgeon's rule.

I didn't know if you had done any prepping for your surgery yet? Will you have someone that will be able to help you when you get home from the hospital?

I've had both hips replaced, the first just before my breast cancer diagnosis at 55. I had the second one replaced at 58, after taking arimidex. I had minor OA in the joint before I started arimidex - arimidex just accelerated the disintegration of the joint. I am quite happy with results of both surgeries.

Hi blessedteacher, it's the middle of the night for me. I have osteoporosis. In my spine, am on Femara since April, and have two reclast infusions, it's time for the third and final one? Any advice for me? I feel my endocrinologist is not taking the AI/Bone density thing seriously as even though I've lost density since starting Femara, he doesn't want to see me back until next November

Loral,

I took Tamoxifen for three years...although I didn't feel great while taking it, I didn't have as much joint stiffness and pain as you experienced. The bone density I had after my last diagnosis and before Arimidex still showed bone density in the positive range. However, I have heard of others on Tamoxifen that had joint side effects...I guess it's like any powerful drug..if it can keep cancer cells from forming or creating tumors it can do anything. My Oncologist always said that hormones are all over your body so drugs can affect everything...not just the breast.

I know it was painful for you, but hope you have found relief since the THR, as I have.Hoping your right hip isn't troubling you. It wouldn't be a total surprise to learn one day that any Hormone Therapy, whether Tamoxifen or AI, was responsible for joint replacement surgery in large numbers of women. It's a hard decision to make, at least for me...Hormone treatment for cancer or misery with severe arthritis associated with treatment.

Praying that all of us won't have to battle BC again....and for a new drug that has fewer side effects.

Ellen

new2bc,

I took Tamoxifen for three years and didn't have significant joint pain, and my bone density test showed I was still in the positive category. So at least for me, tamoxifen didn't seem to create bone issues.

Ellen