I haven’t been able to tolerate any of the AIs I’ve been given. The last one Exemestane I couldn’t even finish the first pack, within 2 weeks the pain in my left leg was so severe that I couldn’t walk on it, along with various other side effects. I mentioned that 3 months after stopping Exemestane I still have pain in my leg and in various other places from other AIs. I never had joint or bone issues before starting them. The oncologist said she would ask for a bone scan as after this amount of time I shouldn’t be experiencing any of the pain I had when on the tablets. The tablets would now be out of my system. She said the scan was was for bone cancer so now I’m petrified as I thought it could be arthritis or along those lines. Now I don’t want it done.
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Hi, I had a bone scan when they saw something suspicious on my CT scan. However, it turned out to be compression of the vertebrae. My Surgeon didn’t tell me they were looking for bone cancer until I got the all clear results. Having the bone scan doesn’t mean you have bone cancer, it is just to (hopefully) eliminate that diagnosis because you have had breast cancer so that they can go on to look at other causes. Good luck and hope all goes well.
My mind has never gone to bone cancer as I was certain that it’s the hormone blockers that have caused my issues. I thought that in some cases they can take months to fully come out of your system. A bit of a shock x
@alwaysontime So sorry to read that you have had such a bad experience with AIS as so many of us suffer one way or another.
Your team are taking good care of you, by sending you for further investigation re your leg pain, however bone cancer has been mentioned, but not confirmed at the moment. Try to take one day at a time at the moment please go for the bone scan and keep everything crossed for a good outcome.
Thinking about you, wishing you well going forward, please let us know how your getting along.
With the biggest hugs to you Tili 
Hi sorry you’re in so much pain, are they managing that while sorting out investigations? Ask to see a pain consultant.
I could not tolerate AIs or Tamoxifen during my primary bc and stopped after 2 years of trying. Some of these drugs do have a long half life and take 5x that to be completely gone.
Unfortunately I developed metastatic disease 5 years after primary diagnosis and went onto Fulvestrant and 4/6 CDK inhibitors, had radiotherapy x4 locations and bone pain was managed with this and slow release pain killers. Now I’m post 3rd line treatment and 3 years post-MBC and still have residual pain but it’s manageable.
Ask for a second opinion from a consultant in another hospital trust if you are unhappy with MDT current management.
Hello alwaysontime
I’ve been on all the AIs and the leg and hand pain became intolerable on each one. My oncologist gave me a three week break last December and I had an MRI body scan done to rule out bone cancer. The results are clear and all bones are healthy. We talked about the risks of not been on an AI and I decided to try again on Letrozole. Second time around, no pain at all!! Just a question - are you on any statins? At the same time as returning to Letrozole, we change statins from Atorvastatin to Rosuvastatin which made a big difference to leg pain. Just a thought. I wish you well in the future and send hugs. Gillian x
Thank you for posting. It sounds like a difficult time for you, since starting your AI’s and now having your leg pain investigated. You may find it helpful to call our helpline on 0808 800 6000 to talk through how you’re feeling. We often find we can help people more by talking on the phone.
Aromatase inhibitors (AI) commonly cause joint and muscle pain. Although for many this will resolve within a few weeks or months after stopping the treatment, some people do find the pain can take several months to get better.
Bone scans detect abnormalities in the bones and can be used to rule out cancer in the bone as a cause for ongoing pain. As @Lizaki says, it doesn’t mean you have cancer in the bone, but it’s important for your team to investigate all possible causes. A bone scan can also detect other conditions, such as arthritis.
Waiting for scan results can be a worrying time and as @Tily says, it’s important to take one day at a time. It’s also important for you to have support to manage the symptoms you have. You may want to talk to your breast care nurse about ways to help manage the pain in your leg, while you wait for your scan and results.
We offer a range of free supportive services that may be helpful for you.
As mentioned above, please do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
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Cassie
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