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Update x 30/07/21

User
Posted 30 Jul 2021 at 13:43

Hi All 
Ive been off this for a year, not been too good. I have a fair bit to write so please bare with me..

 I was wondering if anyone could help me with what I’m going through as I’m hitting a brick wall with the medical profession.

I’ll try my best in explaining my symptoms.

before my diagnosis in 2018, I was experiencing excruciating burning pains in my genital/ right groin and right hip bones and right side of lower back. After my surgery of full non sparing prostectamy I was still suffering the same symptoms, but was told times a healer. Coming to 3 years since surgery, hormone and Radiothearpy treatments I am worse now as times moved on.

at current my psa is x .05 

my testosterone level is x 11

during the surgery they found the cancer had moved to the base of the urethra and bladder, they cut away 30mm. Last November I started experiencing terrible swelling in my urethra, losing blood and mucus during peeing along with the pressure decreasing during peeing.  This along with still getting severe burning pains in my right groin also my right hip and dead leg ( bone pains even worse at night). I explained this to my urologist, which they said was nothing to worry about as these symptoms were side effects from the hormone and Radiothearpy treatments. I didn’t think any different from the answers I received until a week later I received a telephone call from my GP, he had received an email from urologist confirming our conversation, he said that he was astonished with the explanation from the urologist and he had got me into the hospital for a camera down my urethra and bladder as he believed it wasn’t side effects. Well he was proven correct!! They found a growth on the base of the urethra and bladder, the same place as the cancer was originally taken away during surgery, I was told that it needed to be taken out under general anaesthetic. February of this year I went to have the surgery, But, at the last minute, whilst waiting to be taken for the operation  I was told that they couldn’t remove it due to being dangerous, instead they inserted a double valve catheter to stretch the urethra and bladder. The catheter had provisionally helped with the urine flow for 2 months but then went back to dribble flow. Pains and swelling still continued but now noticed the whole genital area keeps turning to a very dark beetroot colour, also still losing blood and mucus during peeing, if anything, it’s got worse.. 

In April I saw the surgeons assistant, she told me that during the surgery for the original non sparing procedure, they left the lymph nodes in my right groin and only took away the secondary lymph nodes near my hip bones, reasons not given as to why they did this. I asked her if the cancer could have moved to the right groin? She said she wasn’t sure.

moving to the hip bones…

my GP sent me to a walk in centre for X-rays on my hips and pelvic bones, results came back to show that I have white shadows in my right hip bones and that they requested for me to get an mri scan done. This was 9 months ago and I’m no further forward . Again my GP has emailed both urologist and oncologist departments for urgent action to be taken, so again wait and see..

 if any of you good people have experienced same or similar symptoms could you please let me know. At present I feel like I’m in a dark circular room looking for a corner..

User
Posted 30 Jul 2021 at 20:48

Hi,

I haven’t experience of this and it seems possibly a bad infection or some kind of growth that might not be prostate cancer.

The reason that thought came up is a psa of 0.05 is very low to have such big effects and growths on the bladder and hips.

Why is it dangerous to remove the growth in that location?

It’s often said that an MRI won’t detect prostate cancer with a psa that is so low and a different type of scan might be better, although I don’t know enough to suggest anything.

It seems you might not be getting very good advice.   If it was me I'd be looking for a private opinion and looking for someone with a good reputation.   I'd also not really want to leave the NHS for my main treatment and perhaps your GP could recommend a different hospital.

Perhaps someone else on here has some better thoughts.

All the best,

Peter

Edited by member 30 Jul 2021 at 20:55  | Reason: Not specified

User
Posted 30 Jul 2021 at 21:16

Thanks Peter 

very much appreciated. I was disappointed when the surgeon refused to take the growth out, his only explanation was that he was worried They would have problems with fusing back together and myself bleeding to death. It was the same surgeon who performed my initial first operation and he explained that they had big problems fusing the cuts etc during the operation and was frightened of history repeating itself. I asked him what he would do if the growth grew bigger, he said they would cross that bridge when they came to it.

 I just wait and see.

Thanks Neil 

User
Posted 30 Jul 2021 at 23:12
This seems to me to be a case where you could have a word with your GP about obtaining a second opinion. I would do this as soon as you can and in need go to another hospital.
Barry
User
Posted 30 Jul 2021 at 23:21
Are you sure it was a growth that they found at the base of your bladder? Could they perhaps have said that it was a stricture? And are you still on the hormone treatment?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jul 2021 at 23:45

Hi Harvey,

The non-healing may stack up with a non cancerous growth.  As said above a stricture, or scar tissue caused by the difficulty healing.  I've read about that before.

You still have problems though with pains that need looking at.

Regards

Peter

 

User
Posted 31 Jul 2021 at 10:22

Hi Lynn

they’ve only referred it as a growth.

when the doctor looked in with the camera he came to a sudden stop, he said that a growth is blocking his way from looking into the bladder. and that they need to cut it out under general anaesthetic. What I previously hadn’t explained was, during the original robotic surgery I found out that quite a bit of damage was done to the inside, also a couple of medical experts said that I had the Radiothearpy treatment too soon after surgery x 4 months which contributed to more internal problems. They explained that whilst I was still on the hormone medication at the time it would have been better to wait up to a year to allow more recovery time before Radiothearpy.

 I was taken off hormone medications halfway through Radiothearpy treatments and not been back on since. I was informed a couple of weeks ago by my GP that I should be zero for testosterone not 11, because everything was taken away from the surgery, he suggested that he was going to discuss with the hospital for me to go back on hormone medication. 
so I’ll just wait and see what happens next.

will keep you posted 

thanks Neil 

User
Posted 31 Jul 2021 at 10:41

Hi Peter 

the pains and swelling are excruciating, it doesn’t help either when I get pains for the need to pee then I only drip like a tap.

the swelling is at the base and the tip along with severe shooting pains then colour change to very deep beetroot red,( including the scrotum), it’s worse when I’m in bed asleep then the pains attack me making me shoot out of the bed.

do strictures release blood and mucus? 

I wonder……

cheers

Neil

 

 

User
Posted 31 Jul 2021 at 11:33

Neil 

My stricture did not release any blood or mucus, but the radiation damage did. I did not have HT with SRT because it was thought to make the RT to toxic.

Thanks Chris

 

User
Posted 31 Jul 2021 at 13:19
Neil, I think you are very stoical considering what you are experiencing and obviously I am in no position to say what could be done to improve your situation and indeed there might not be very much at this time. However, I would push to explore possibilities. I have had to do this myself at times to make progress and get things done.

Barry
User
Posted 31 Jul 2021 at 13:29

Hi Chris 

thanks for the email, I tried phoning you back but the number was incorrect. Probably could re send then we could chat 

cheers

Neil

User
Posted 31 Jul 2021 at 13:36

Neil retry the number, it is correct, there has been a network problem.

Thanks Chris

User
Posted 31 Jul 2021 at 16:45

Neil,

I think you should talk with your GP about being referred to a specialist urology centre. UCLH is one such, but quite a way from you. We have a FOPS support group meeting on Wednesday which I just posted details of (also in my profile). We have 3 consultant urologists there to take your questions, and they may be able to suggest a suitable hospital to be referred to near to you, if UCLH is too far.

User
Posted 31 Jul 2021 at 22:58

Hi Neil,

There is some good advice and offers on here.   

I recall reading about scar tissue before my op and it caused me to be ultra careful with the healing process after the op.   Apparently if the operation doesn't heal properly scar tissue can build up making it difficult to pass urine and then needing another op to remove the scar tissue.

There can be a lot of different effects after the op.  I get occasional sciatic nerve pain that I read can be caused by the nerve being slightly moved during the op.  I read there are different types of pain and mine is like an electric shock which quickly goes away, luckily as it's extremely painful.

Yours sounds like something is blocking something.  I don't know if you've tried drinking water instead of other drinks or eating food that's low in fat and sugar.  Some foods and drinks can agitate wounds.   Andy's offer sounds good although I'm not sure I'd want to discuss my case in an open forum but sometimes needs must and you don't know what you can do.

All the best, Peter

 

 
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