Hi Johny,
My husband and I just read this- and Pete also had quite marked Lymphodema after his surgery back in January. His left leg swelled up to twice the size of the right one, which caused limping. The limp and pressure was so bad that we bought Pete a walking stick (an interesting look for a 47 year old!)
In Pete's case he had a build up of lymphocele in the pelvis as well, which had to be drained requiring 2 weeks in hospital (this is rare we are told). After that, the swelling did gradually go down.
Pete requested the GP to send him to our local Hospice lymphodema clinic. In the meantime we kept the leg clean and moisturised every night- which is important to stop the leg getting any infections. (having a faith we prayed each night too!).
Anyway, the swelling did go down, and by the time he went to the lymphodema clinic it was confirmed that he did have lymphodema but it is now classed as mild. He was measured up for an excellent support stocking which he has to wear each day, and he walked out of the clinic stick-free!
The support stocking helps tremendously. He will need it long term,
The thing with lymphodema is to get the right help to stop it from worsening, as if it gets worse it's harder to control or reduce the swelling.
I would really recommend you ask your GP to refer you to a lymphodema clinic in your area if you have one, or to a specialist physio / nurse. The support stocking needs to be measured to you, so it's important a professional does it, and Pete was given a EU standard one, not British, as the EU ones are slightly thicker and therefore more effective.
Having a pillow underneath the affected leg, supporting the knee area is also very helpful at night.
We know what you;re going through, so hope this helps in some way.
All the best.
Edited by member 16 Jul 2015 at 21:22
| Reason: Not specified
'Sorrow looks back, worry looks around, but faith looks up' |
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User
Hi Johny,
There is a national Lymphoedema society, they have a website. They are dedicated to promoting understanding and treatment of this condition, so often a side effect with cancer treatments. Seem to remember they had a very good helpline too. I live in Bristol and found that Macmillan had a dedicated Lympheodema treatment centre, bless them, no-one told us about this ! So, may be worth trawling round the internet for local resources. There are specialised types of massage which can held and some techniques can be learned. You need a massage therapist specially qualified in this. I remember taking Neil to see a lady who used these techniques who also taught us how to stimulate the lymph fluid to help move it out of the swollen area. There are various bandaging techniques, trouble is it depends on where you get the problem. You are right to not ignore it, the other thing is to be very clear it is in fact lymphoedema, again,an agency or indvidual with a specialist knowledge would be best placed to do this. Our GP also diagnosed it but had no idea what to do next, hence the 'self help' !! Good luck,
Fiona.
User
I was told I had my lymph nodes removed as well as the LRP and bladder repair. But 25 ?? Gosh I didn't know there were that many. I didn't ask. I assumed only 2. I was in hospital extra days due to high drainage. But no side-effects since leaving.
Chris
User
yes 25, no idea how many men have in that area, anyone have any ideas?
User
Hi I had 32 removed and none were cancerous. What a waste lol
Roy
User
Johny,
The organisation I mentioned is the 'Lymphoedema Support Network'. Just got their latest Newsletter today. Would recommend to anyone with this complication of treatment !
Fiona.
User
Hi Johny,
My husband and I just read this- and Pete also had quite marked Lymphodema after his surgery back in January. His left leg swelled up to twice the size of the right one, which caused limping. The limp and pressure was so bad that we bought Pete a walking stick (an interesting look for a 47 year old!)
In Pete's case he had a build up of lymphocele in the pelvis as well, which had to be drained requiring 2 weeks in hospital (this is rare we are told). After that, the swelling did gradually go down.
Pete requested the GP to send him to our local Hospice lymphodema clinic. In the meantime we kept the leg clean and moisturised every night- which is important to stop the leg getting any infections. (having a faith we prayed each night too!).
Anyway, the swelling did go down, and by the time he went to the lymphodema clinic it was confirmed that he did have lymphodema but it is now classed as mild. He was measured up for an excellent support stocking which he has to wear each day, and he walked out of the clinic stick-free!
The support stocking helps tremendously. He will need it long term,
The thing with lymphodema is to get the right help to stop it from worsening, as if it gets worse it's harder to control or reduce the swelling.
I would really recommend you ask your GP to refer you to a lymphodema clinic in your area if you have one, or to a specialist physio / nurse. The support stocking needs to be measured to you, so it's important a professional does it, and Pete was given a EU standard one, not British, as the EU ones are slightly thicker and therefore more effective.
Having a pillow underneath the affected leg, supporting the knee area is also very helpful at night.
We know what you;re going through, so hope this helps in some way.
All the best.
Edited by member 16 Jul 2015 at 21:22
| Reason: Not specified
'Sorrow looks back, worry looks around, but faith looks up' |
User
Thanks all for the reply,
Iv been in contact with my local clinic, im on the list so to speak, not sure how long it will be before i get in. Am able to walk ok in the morning, but as the day goes on the pressure builds up, annoying being as i am trying to get fit. I will let you know how i get on in the future, seams not many get this side effect as a result of prostate removal
johny
User
Hi all,
A quick update, im 22 months post op and still getting major leg pain after exercise or walking. Initially put this down to Lymphedema but being as i dont get the classic leg swelling im not so sure. Im beginning to think its a nerve issue Currently getting nowhere with the NHS just told to take pain killers. Anyone else suffer the above symptoms as a result of the prostectomy?
thanks, Johny
User
Four weeks after my op (RARP on 26th Jan 2017) I had an uncomfortable lump in my groin, in the next 24 hours my left leg became very swollen. Walking was eye wateringly painful. I was admitted (A&E) and was diagnosed with a lymphocele in my abdomen. After 4 days (Friday to Monday (it was a weekend!!)) I was given the option of draining or nothing. I opted for draining. That afternoon I was told (by a junior doctor) that I should walk (through the pain). I did that and the next morning my leg swelling had reduced. I was discharged . . . see how it goes.
I got my GP to get me an appointment at my local lymphedema clinic - 12 month waiting list!
Five weeks later . . . . . my left leg (thigh) is just 1cm bigger than the right leg but I still have a large volume of water? in my pubic area. I am hoping it will drain.