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14 Months post op....on going issues, finally getting to me.

Posted 31 Jul 2016 at 21:56

Hi all , well im 14 months down the rd from my surgery my PSA is not registering so the future looks bright and im forever grateful for that..........But....... there is always a But!!

Ongoing issues

I am struggling with a side effect of Lymphedema,  due to having 26 lymph nodes removed during  the surgery. Its in my lower ab area and left leg and is limiting my mobility to say the least. the doc has given me compression pants to keep the swelling at bay but it getting to me now, any one else suffering with this complication at all?

One of my testicles was very swollen after surgery, i was told this was normal and would return to normal.....it didnt, it effectively died and has shrunk to about the quater of the size it once was. Again anyone else has anything like this?

Incontinence, still ongoing. Iv done the exercises, and even had a go with the  anal electronic simulator and im still leaking. Just to really rub it in iv had a letter from my local NHS saying they will no longer provide me pads due to cost cutting as they consider i dont leak enough!!!! Not sure how thats worked out its not going anywhere else, im on 4-5 pads a day(grade 3 tena).

On the bright side, iv got glaucoma and cataracts..........but both under control and getting sorted and my erections have returned with the help of Viagra and Cialis although its probably the erections that buggered my eyesight up in the first place!!!! 

Anyway, any advice , experience, opinions etc about the issues above with be gratefully received, sorry for the offload but i know you guys and girls can relate to how im feeling.






Edited by member 02 Aug 2016 at 22:54  | Reason: Not specified

Posted 02 Aug 2016 at 12:28

Johnny, sorry I can't help with your problem but I am just bumping your post up so that someone may see it and answer.

I hope you get some relief to all your problems and get funding back for your pads, not sure how they measure your leaking without inserting some sort of device, which obviously they won't, you should start exaggerating how much leakage there is to see if you can get funded again!!

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

Posted 02 Aug 2016 at 12:50

Hi Johny
I could cry for you mate I really good. You deffo had it bad side-effects wise , but you put a brave face on it. I know you must be struggling inside though.
As you said you're essentially cured, but left with a right load of s**t.
Everyone is telling me how good I look , I'm totally continent , no natural erections but can rustle something up for her when necessary with tablets and pump etc. But then I'm on an incurable route HT only at the moment. This cancer just sucks to the max whichever way you go. I too had lymph nodes removed and they had spread , but I praise the Lord I didn't end up like you with fluid , although I do have some in my abdomen.
You're a strong man Johny. You should pat yourself on your own back. You'll always have people who understand on here. Take care

Posted 02 Aug 2016 at 13:36

12 months in front of you, cannot help with the lymphoma, just waiting for a date for urethral procedure number nine, been left incontinent from one of the procedures still get free pads with a 10ml a day leak. PB you weigh the pads to get the leak and the add a nought at the end. Cannot get a full natural erection,the PSA is rising and looks like I am heading for salvage RT. So I have an affinity with your situation, but remember what we are told prostate cancer is the best cancer to get.

Thanks Chris

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