New onset of dull, aching pain in mid and lower spinal area

Gosh you come off as stoic in your post! Sorry you have gone through all that but glad you are doing mostly well.

Can your PCP order an x-ray of your spine? My oncologist directs me back to PCP for hip pain, for x-ray.

I have spinal fractures (my docs did not give me a bisphosphonate during letrozole, due to other health issues, and bones got bad)

If the x-ray is negative then it seems you would be dealing with soft tissue issues. In my experience, muscle spasms often feel like it is my spine!

People report all kinds of side effects on letrozole and on Zometa but many do fine. Are you thinking this is a side effect, an injury or are you mostly worried it is cancer spread to bone?

Thank you for your feedback--this is very helpful! So, I am thinking my Oncologist might refer me to my PCP for an xray as well--which could provide some peace of mind.

Thank you for your question...yes, I do worry about spread to the bone. I feel confident the ache is not from an injury. I could see how it might be arthalgia or even a side effect from Letrozele or Zometa. I just don't want to overlook anything and since this is, relatively, a new "effect", I want to make sure to monitor it appropriately.

Thank you so much!

The thread on recurrence while on an AI deals with a similar concern (linked below) so you are wise to investigate. My oncologist is very cavalier about recurrence. If you continue to be concerned, scans (like PET scan) might be reassuring, beyond the x-ray. I am almost 10 years post diagnosis and feel nervous about unusual pains. I get it!

https://connect.mayoclinic.org/discussion/anyone-had-cancer-return-while-taking-hormone-therapy-meds/?pg=2#comment-1106415 The post on recurrence is not meant to alarm you but validate your request for testing.

Breastcancer.org is another great site by the way!

I’d probably request a CT scan, because I’m not sure my doc would approve a PET scan initially. I do think this is worth pursuing. Even if you find it’s not a big issue. Worrying about it over time is not good for you!
I think a CT scan would rule out a wider variety of causes than a regular X-ray, but I’m not a doctor.
I’d be considering degenerative disk disease, especially because of the letrozole. If it’s that, then an adjustment to medication might help stop further damage.
A CT scan would also help to see if there were any organs pushing on the spine causing the pain. That would prompt further investigation.

I think it is best to be as clear as possible with doctors about symptoms and onset. And things you’ve tried, like you mentioned.
They need “hard” data to get these scans approved by insurance. That could be when the aching started (guesstimate is okay) or perhaps you had mild discomfort prior to a certain date - then you realized it was constant. Does it happen all night, or only after sitting for hours, or now with every activity 24/7 - all this helps them eliminate what might be causing it. Along with telling them your physical symptoms, also include how it’s affecting your life. More anxiety, avoidance of certain activities, limiting your physical activity - Doctors (should) know that if it’s affecting your daily life that it can lead to even more physical problems as a result.
Wishing you the best!

@Rubyslippers I have never heard that letrozole can cause degenerative disc disease? Can you share info on that?

I love BC.org too.

Thank you for your response and suggestions of questions/answers I should be thinking about prior to speaking with the physician. This is so helpful and reminds me to have my questions/explanations of pain, etc. prepared!

Wishing you the best, also!

Can letrozole, or any AI, cause degenerative disc disease? I have not seen research that determines this, only one case study.
I was looking at lumbar area pain that might be caused by something other than cancer. It is well known that degenerative disc disease is much higher in postmenopausal women. Due to the loss of estrogen, see below. If someone already had problems with degenerative discs, symptomatic or not, it stands to reason that an AI may exacerbate it.
Does an AI cause degenerative disc disease? Probably not. Can it worsen it? Probably so.

Interestingly, looking for answers to the above question I found an article stating that in their study - women on diuretics had less joint pain while taking an AI. It was suggested that the joint pain was caused by increased fluid in the joint. I had not read this before, maybe those taking AIs already know this. But if not, might be something to discuss with your doctor.

Sex hormones and degenerative disc disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10556885/#:~:text=Women%20were%20found%20to%20have,in%20maintaining%20intervertebral%20disc%20integrity
The role of diuretics with AIs
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6428535/#:~:text=Around%2050%25%20of%20women%20receiving,of%20diuretics%20may%20be%20helpful

@Rubyslippers I finished my treatment in 2020 and never had any change in my degenerative disc issues, Pretty bad to begin with! It does make sense that the AI's could increase problems.

I experienced dull lower back pain in my spine about 3 years after double mastectomy and taking Letrozole. My breast specialist ordered CT Scans but they came back inconclusive so she ordered a PET scan. Results showed bone metastasis. That was in September 2023. After talking with my oncologist and getting a 2nd opinion I started treatments including Verzenio, Fulvestrant injections & Xgeva injections. Tolerated everything except the Verzenio caused chronic diarrhea leading to ulcerative colitis so had to stop the Verzenio. Am now on Kisqali which is also a CDK4/6 inhibitor but with different side effects. Won’t know how it’s doing till my next PET scan in October. Point is, don’t ignore your body’s pains. CT scans will probably be required before a PET scan if it’s necessary but you should request a scan. I’m only speaking from my own experience. I wish you all the best and pray your outcome is good!