Lymphedema after lymphadenectomy and whole-pelvic radiation

I must have missed the small print on the disclaimer sheet before my whole-pelvic radiation and RRP. For the last couple of months I've had swelling in my left foot. I thought it was just because I had become all too lazy in the exercise department. But once I started exercising again, the swelling reduced only slightly.

That's when I started researching and discovered that for folks like me, there's a 25-30% chance of lymphedema because of permanent damage to or removal of the lymph nodes. The reduction in lymph system efficiency leads to water and proteins not being cleared quickly enough from my left leg and foot.

So, on to treatment, which essentially is massage and compression stockings... hey look at me, Man in Tights!

Given my G9 condition, I'm not complaining, unless the cancer comes roaring back right away. Caught early, lymphedema can be managed with little loss of movement or functionality.

Just another thing for folks to think about when considering the options.

Nellie

Hi Carlos,

Lymphedema is not curable. The damage to the lymph system is permanent. It can, however, be managed if caught early. In my case, I would still have gone ahead with treatment if I had known this was likely. And to answer your question, the lymphedema was from the surgery + WPRT. Here are some articles you might want to read:

"Lymphedema" www.hrpca.org/lymphedema.htm

"Lymphedema: A Primer on the Identification and Management of a Chronic Condition in Oncologic Treatment": onlinelibrary.wiley.com/doi/10.3322/caac.20001/abstract;jsessionid=99B36E97404EE98B2FA900665400558D.d02t03

In your case, if it is believed that your cancer has spread to only a few lymph nodes, you might want to see if you get a scan to pinpoint which node is problematic and just have that treated. Drs. Myers and Dattoli seem to be working together with these kinds of cases. Of course, with your currently low PSA, the scan might not be able to find anything yet.

Hope that helps.

Nellie

Nellie,  Thanks for the links on lymphedema.  I'm sorry you are having to deal with this. Dattoli is about an 8 hour drive for me and might be worth it but I would have to wait until my PSA gets a good bit higher.  I think Dr. Myers says PSA needs to be in the 2 to 5 range for the Sand Lake scans to be effective.  As to Jeff's question about having WPRT after SRT, my RO said no problem.  I have had the same thoughts in the back of my mind and might get a second opinion on that. 

Carlos

Hi Gibson,

Thanks for sharing your father's experience. I'm happy he was able get some relief. It appears that the diuretics and compression were done soon enough to avoid permanent damage. Here's what the first article I mentioned above said about diuretics:

Article said...
Diuretics. These may help some in the short term as they remove excess fluid from the body via urination. They do not remove the excess protein deposits found in lymphedema and there is evidence that long-term use can be harmful by leading to connective tissue fibrosis.

That's one viewpoint at least. I'm hoping that the compression route works in my case, which I think has not progressed very far. But if diuretics can initially help them get the swelling down, I hope they consider it.

Nellie