My husband is two and a half weeks post robotic surgery which also involved lymph node removal on the left side. He now clearly has lymphoedema in his left thigh which is stopping him moving around for longer than 20 minutes at a time. The specialist nurse has told him this is to be expected and that it should get better over time without any action being taken. What experience have others had of this - will it get better and if so how long will it take? Thanks
Steve, I think what you are referring to is a lymphocele rather than lymphoedema. I've had the misfortune to have suffered both. Mary, I was similar diagnosis to your husband. T3b with cancer in one lymph node which showed up in the histology. I was fitted with the drain during the surgery and a further drain later on to drain a lymphocele. I was told they would be taken out after about two weeks when the lymph had more or less stopped draining. That never really happened and I ended having them in for around five weeks. So it was not unexpected when I started with mild lymphoedema around my pubic bone and at the top of my thigh. That did not cause any problems but following SRT the lymphoedema got a lot worse and my whole right leg started to swell up. I was able to walk around but my leg did feel stiff and heavy. I had to wait seven weeks to get an appointment with a lymphoedema nurse and and during that time there was no improvement to my leg. I now have to wear a full length compression stocking (except when sleeping) to keep it under control. It looks like I'm going to be stuck with that for the duration. I was also told these things can usually sort themselves out as the lymph finds new channels in which to drain. I suppose at two and a half weeks there is still time for that to happen. If it doesn't I would push to get a referral to a Lymphoedema Nurse. Just one question, has it definitely been diagnosed as lymphoedema? My lymphocele presented with similar symptoms at about the same time post surgery. The pocket of trapped lymph was pressing on my right iliac vein which was causing my thigh to swell up. As steve mentioned it can be detected with a CT scan. I hope it sorts itself out.
Thanks to you both, very helpful as ever. Sorry you have been through so much. He hasn’t seen a doctor or nurse yet (just email) so we can’t say for certain it’s lymphoedema but it looks that way to my untrained eye. Nurse says it’s entirely to be expected and they won’t do anything yet. I just wondered if that’s correct and the swelling/fluid retention/heaviness is just what happens. Presumably they will do something if it doesn’t improve with time. It’s frustrating because it means he doesn’t feel like being up and moving for long, and he needs to be to recover. It’s one thing after another with this disease - dealing with all the side effects including incontinence and now this! No plans for him to speak to a doctor for another four weeks and that will be a phone call. If it gets worse I’ll encourage him to press the specialist nurse for a face to face. Thank you!
Thanks Lyn. Yes catheter is out but issues with leg started afterwards. Left leg is really big compared to the right! He looks like half professional rugby player half his previous skinny self. And not only above the knee. It is immobilising him which is not good for recovery. My gut feeling is that it should be checked out properly and so I don’t agree with the nurse either. He’s going to email him a photo and push to be seen - we have had to push at every stage of this process so nothing new there.
The irony is before the operation he felt really well! Although we know he had to have it.
Thank you x
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