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Lymphedoema

User
Posted 02 Sep 2021 at 09:55

I had my radical prostatectomy in June 2019 and since then, touch wood, most things have been fine. Incontinence 99% cracked, PSA still undetectable but ED still a very real problem.

Anyway I had read it could take six months or more for the swelling in the groin to go down so was not too bothered. I had 36 lymph nodes removed in my operation but all were clear. I had decided to mention it to my consultant at my 9 month appointment as my groin still felt swollen , soft and squidgy. Covid intervened and I have not had a face to face since. My groin however still feels full of fluid.

In November of last year I was admitted to hospital with septic arthritis in my right shoulder, but my first symptoms were an ache in my right thigh and the skin in my groin and right thigh was red. My septic arthritis was cured by surgery but ever since I have been plagued with days of feeling yuck and a raised temperature, though the latter has decreased in severity. My GP did force the hospital into testing me for everything under the sun but all tests came back clear. I did mention to my GP, by phone, and the consultant in person the problem with my groin and the fact that every time I feel yuck my groin and thigh go red (I have photographed the signs). Anyway I was discharged because they could not find anything and my symptoms appeared to be diminishing.

Last week I saw a new GP and told her the problems and she examined me. More to the point she agreed that my research suggesting lymphedoema was perfectly plausible and I have been referred back to the hospital.

Has anyone else had this problem after this surgery? Or am I condemned to feeling yuck every fortnight on my own😂?

 

Rob

User
Posted 02 Sep 2021 at 14:46
Lymphodema is a known risk of RP, particularly where more than one or two lymph nodes were removed at the same time. It is the main reason that surgeons don't take 36 nodes out unless there is a really strong suspicion of spread.

Hopefully, a referral to the lymphodema clinic will help.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Sep 2021 at 06:40

Lyn

Your reply came as a hell of a shock. Before my operation there was no hint that the cancer had spread. The MRI showed a problem within the prostate. My bone scan results were late coming back and had not arrived by the morning of the operation, but the surgeon decided to go ahead. When the scan did arrive it showed a mark on my pelvis. Even when being referred for a PET scan my surgeon was adamant that the cancer had not spread , and all the results proved him right. So why would he take 36 lymph nodes out? It doesn’t make sense to me.

I had never heard of lymphedoema until I started my research.

 
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