Lymphadema flare after 10 years.. something to worry about?

amanda6

wondering if others here have had a lymphadema flare after many years of being free of symptoms...I had mild lymphadema 10+ years ago while going through chemo, then not again until this Spring. I've had a compressed nerve in my elbow with it & it is very stubborn, hanging on. I can't help but wonder if this flare after so long indicates something like cancer recurrence, metastasis? Or is this perfectly normal, it has me scared. Any thoughts on this? I'm finding hard, scientific info on lymphadema very hard to find...

MinusTwo

amanda - LE can occur (or re-occur) anytime in your life. I had a friend who developed LE at 25 years for no reason she could figure.

I'm not a doc, but I think it's unlikely that a compressed nerve would be mets. Did you have an X-ray or scan to get a firm diagnosis of the nerve? Or that an LE flare would indicate mets either.

You're right - many docs don't even believe LE is a problem. See if you can find someone who is trained & certified at least for a consult. Below is a great link with also sorts of LE info, including docs in many areas.

https://www.stepup-speakout.org/

LivinLife

Just want to send support amanda! Although I have not been diagnosed with lymphedema I am dealing with similar elbow issues and cording creating swollen lymph nodes in my elbow, etc. Is the lymphedema therapy helping you? I think you had a couple sessions more than me the last time we were volleying about these things. I just started noticing greater relief and only have 3 more sessions before the place closes for good (not closing just due to COVID). I'm hoping you're noticing some improvement while I also hear your concern something else may be or is going on...

amanda6

thank you for replying minustwo . Yes, I had a nerve conduction test & really not sure which came first, the lymphadema or the nerve thing. At in rate, the nerve compression complicates the lymphadema therapy - I've been seeing a clt for about 12 sessions now, just finished up. I made an appointment to see an oncology nurse - for piece of mind. Cancer has been far from my mind for many years, this lymphadema flare has brought it all back!

amanda6

thanks for your support... I just finished up the therapy & have insurance approval for a few more sessions until mid Jan if I need them ( & if they stay open through covid). I've had improvement, not gone but better. And I have a prescription for neurotin-take that at night with a Tylenol, works pretty well. Glad you're feeling some relief too, nerve pain sucks! Take care:).