I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

Time from diagnosis to treatment

Email this conversation Print this conversation

User

Posted 21 Mar 2023 at 20:51

I guess the role of the onco Vs physicist Vs radiographer, is that the onco is in overall control. A bit like an oil painting being described as "school of Leonardo da Vinci", he probably drew the outline of Mona Lisa and just asked one of his minion's to fill in the details, "and give her a nice smile, like someone's tickling her..."

Dave

User

Posted 21 Mar 2023 at 21:47

Thanks Chris, appreciate the comments. I think that the only reason that I was thinking of RP originally was the hope that the nerves could be spared and once that option had gone then RT became the preferred option and the short, relatively, period on HT only confirmed this.

Thanks Dave

As long as the minions are experienced I will be happy.

Best wishes

Ian

User

Posted 21 Mar 2023 at 22:29

The skill of the oncologist is in designing / planning exactly how much radiotherapy you need where and write the computer programme - s/he will usually do this in consultation with a physicist. Once the computer programme is written, it is over to the radiotherapy team to get you in position and then press start on the computer each day. They don't 'do' the treatment.

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

User

Posted 22 Mar 2023 at 21:04

Thanks again Lyn, more useful info.

User

Posted 24 Mar 2024 at 12:09

Hi all, a year I think since my last post in this conversation. I had 4 months of HT between April and August last year followed by 20 fractions of RT in August. I felt that after waiting almost 16 months to get treatment I needed to step back and try and think of other things hence the lack of posts. I had no real issues with the HT or RT, seems that I was lucky. 6 months on and I now am struggling badly to pee. Started early February and has gradually got worse. Infection test came back negative but I am taking Ciproflaxin antibiotics and Tamsulosin but after a week there is no change. I've been referred to Urology but based on my experience so far I am not expecting great things from them. I a sure that I have a stricture or some other kind of blockage as the pain at the base of the penis when the bladder is squeezing is intense. A question I do have for anyone who has experienced low flow issues is how little urine being passed should be a worry as far as future bladder weakness or retention issues are concerned. I was up 6 times last night passing probably 50 to 100ml each time but not all at once. I generally have to sit there for 15min while it comes out in small drips and spurts.

Thanks

Best wishes all

Ian

User

Posted 24 Mar 2024 at 12:40

Originally Posted by: Online Community Member

I was up 6 times last night passing probably 50 to 100ml each time but not all at once. I generally have to sit there for 15min while it comes out in small drips and spurts.

Sorry I can't help with your specific question. I just wanted to say that the disturbance to your sleep must be soul destroying and I hope they can identify and deal with the issue asap. Best of luck.

User

Posted 24 Mar 2024 at 13:07

My cancer diagnosis started with an episode of urinary retention. I was able to piss out 25ml at a time. After a call to NHS111 I was at an emergency GP who prescribed tamsulosin. It didn't really work. About two days later my own GP sent me to AandE. The first doctor said "if you can piss at all, I'm not putting a catheter in". About two hours later a nurse turned up with a bladder scanner. This showed I had 500ml in my bladder. They put a catheter in and I nearly filled up two half litre bags (nearly one litre). This went on my notes as 485ml. As the nurse was trained to "make a note of how much urine the patient puts into the first bag". The first doctor was never seen again, I think he was a patient who found a doctors uniform and put it on.

I really think your situation is almost identical to mine. You are not able to empty your bladder so it is full, that can potentially damage your kidneys.

With the knowledge I have now if I were in that situation I would be down at AandE today. You will probably have to pretend it has got a lot worse to justify your trip, demand a bladder scan. I think even after you have had a piss that scan will show more than 300ml which is more than a normal bladder would hold. If that is the case you will need a catheter. If it comes back at about 50ml you probably have a different problem to what I had so I can't really help.

I know you are already under the care of medics, but my experience is that medics are not always as competent as they should be. Your symptoms are almost identical to what mine were.

Don't take this as medical advice I'm not a doctor, but do take it as advice of exactly what I would be doing if I were in your situation.

If you do find yourself with a catheter in by the end of today, then read the post copied below.

https://community.prostatecanceruk.org/posts/t22995-Escaping-the-Catheter

Dave

User

Posted 24 Mar 2024 at 14:11

Thanks Adrian, appreciate it. I'm mainly concerned with how long it will take to see someone competent and get it sorted. Based on my past experience it will be a long time.

Cheers

User

Posted 24 Mar 2024 at 14:17

Thanks Dave that's really useful.

I have a GP appointment tomorrow morning and she is one of the good ones so I'll give her a good grilling and mention the bladder scan etc. I really don't fancy going to A and E on a Sunday and being seen by a junior doctor angry about their pay. If I'm going to go I'll take my chances and leave it until tomorrow. On Thursday I had bloods taken for kidney, liver and PSA so should have those back this week.

Thanks again for the post Dave, really appreciated

Ian

User

Posted 24 Mar 2024 at 15:03

With a GP appointment tomorrow, I agree don't go to A and E today (unless symptoms get worse). Getting those blood results will be very helpful, urinary retention can damage kidneys. It is very good news that if it is urinary retention (I think it is) then you will know straight away if it has damaged your kidneys, and though that wouldn't be good news at least it would prompt definite action.

The first doctor at AandE that I saw and I describe as incompetent saw me after about a three hour wait. I described my symptoms and he said as I could piss there was nothing to be done. He said the bladder scanner was broken but they may be able to find one on a ward. I said "does a bladder scanner use ultrasound" (I'm a physicist) he said nothing, laughed and walked away, he never returned. I assume he thinks ultrasound is only used on pregnant women. Anyway a bladder scanner is a specialised device, but yes it does use ultrasound. About an hour later two nurses turned up with a working bladder scanner.

Maybe there are some guidelines about diagnosing urinary retention and I didn't meet them, but the fact I had a litre of urine in my bladder, means I had urinary retention, irrespective of what that first doctor thought.

Your GP will probably not have a bladder scanner. Your GP will probably not be prepared to use a catheter as a means of diagnosing urinary retention. If the GP cannot categorically rule out urinary retention I wouldn't leave her surgery until you have an emergency referral to Urology that afternoon. My experience of the NHS is that sometimes you have to be very pushy.

Just because your symptoms are almost identical to mine doesn't mean you have the same diagnosis is mine only a medically qualified person, can give you a reliable diagnosis.

Dave

User

Posted 24 Mar 2024 at 19:12

Thanks Dave, great advice. If I don't get any joy with the GP I will probably look at paying for a private scan just for the peace of mind.

All the best

Ian

User

Posted 22 Apr 2024 at 17:40

Hi all

So I have had a pretty horrendous few weeks unfortunately and I would like to post about this in case anyone going through the same in future happens to read this. I believe my experience has been almost identical to that experienced by Dave64 mentioned in a previous post. After seeing 3 different GP's and given different relaxants for the bladder and prostate I continued to be unable to pass more than about 25ml at a time and this was a struggle. Eventually on Saturday 30th March I gave in and spent a joyful 6.5hrs in A&E where they were absolutely useless. At this time I had started hallucinating, I hadn't slept for over a week and hadn't managed to eat anything more than a bowl of cereal a day. My abdomen was like a football. A&E scanned my bladder and said there was 136ml present and the bloods showed no problems so basically stop being a nuisance go home and drink more water. Referred to Urology with an expected wait for an appointment of 12 weeks, great.

Fortunately I had booked a Private consultation with a Urologist at a hospital outside my local authority the following Friday, waiting for that was hell. Within 5 minutes of speaking to him he had scanned my bladder, detected 1.5L and referred me for immediate admission to the Surgical Assessment Unit at his hospital where one of his registrars was on duty. This was 7pm on Friday 5th April. Was admitted onto the ward where they again scanned the bladder.

Results

First scan - Your bladder is empty to which my response was try again.

Second scan - You have 136ml which coincidentally is exactly what was measured at A&E the previous Saturday, try again.

Third scan - You have 440ml you must have passed 1L between leaving the consultant 1hr ago and arriving here. At this point I pretty much broke down and begged them to put a catheter in.

A size 16 catheter was inserted, not pleasant as it went through the narrowing in the prostate but 1.5L almost to the ml was drained off. The registrar at this point looked very embarrassed and said that they could only detect 440ml.

Conclusion

The consultant had a different more accurate bladder scanner OR the nurses in both A&E and the SAU were not trained properly in the use of the equipment.

Bloods were taken and my blood sodium level was through the floor due to the urine backing up to the kidneys. At this point my vision was gone, I was slurring and my tongue had swollen and was cracked and full of ulcers. I was put on an IV saline drip and slept for the rest of the night apart from when woken for blood pressure checks and more bloods. The first sleep for over two weeks. I woke the following morning, still with blurred vision, sore tongue but otherwise feeling like a million dollars.

I am convinced, and have since told him, that the consultant that I saw saved my life as by the time I saw him I could feel my body shutting down and the terrifying thing was that there was no-one to talk to or anyone that seemed to take it seriously.

I have had the catheter in now for 3 weeks and am not getting on with it at all. Finding it very uncomfortable to sit down and in bed at night it is like a constant ache. The district nurse is coming to replace it on Friday and is going to change it to a size 14 although whether that 0.5mm will make a difference is debatable. I have a TURP operation booked privately with the same consultant that I saw on May17th when hopefully I can put all this to bed and get on with trying to enjoy retirement.

Sorry for the long winded post but I wanted to reiterate what Dave64 said in his post. If you are unable to pee or are struggling to and you feel that your bladder is full do not let anyone fob you off with bladder scanner results. As the consultant that I saw said, anyone with even a limited amount of medical knowledge should have been able to feel 1.5L in a bladder with a physical examination.

All the best everyone

Ian

User

Posted 22 Apr 2024 at 18:08

Ian, you won't be the first or last person to have more in your bladder than the scanner shows. I have had similar issues.

Having had a urethral catheter on at least a dozen separate occasions, I would say the difference between a 14 and 16 is noticeable.

Have you been given or told to use any of the anesthetic, antiseptic and lubricant gels. I swore by instilagel,the NHS in our area now prefers hydrocaine,it's cheaper. Optilube is another option. The three gels are designed for catheter insertion and maintenance, why use anything else.

I found a squirt of the gel eases any soreness and the lubricant helps reduce friction.

They are available without prescription at most pharmacies except Boots.

Hope things improve.

Thanks Chris

User

Posted 22 Apr 2024 at 18:28

Thanks Chris

I will ask the district nurse about the gels when she comes to change the catheter on Friday. The only thing I have been using so far is a bit if KY jelly at the tip to stop the tube rubbing but the irritation/aching is more at the very base of the shaft where the tube disappears inside the body so not sure how any gel would get down that far. The consultant recommended trying co-codamol which I did today and that does seem to have eased it. Now that I have a date for the TURP to aim for I am sure that I can manage.

Thanks

All the best

Ian

User

Posted 27 Apr 2024 at 10:42

Hi all

The district nurse came yesterday and removed the size 16 catheter, not a pleasant experience as it seemed to be stuck to the urethra in the shaft of the penis, and fitted a size 14. The 14 is a lot softer material almost like a silicone whereas the 16 was more like a clear harder plastic. After a night of the shaft really stinging, this morning I am a lot more comfortable and glad that they made the switch. I have the first TURP pre op next Thursday and then the second pre op on the 13th followed by the TURP on the 17th. Fingers crossed that will be the end of all issues and apart from the 6mths PSA tests life can carry on as normal.

Good luck everyone

All the best

Ian

User

Posted 03 Apr 2025 at 21:10

Hi Ian

Hope you are doing better Did you request for the PET PSMA scan?

I have recently been diagnosed with PCa. PSA was 5.5. Biopsy was 27 cores sample with 14 positive. Gleason score 3+4=7. The Nurse told me that the MDT agreed that RARP is the best option to follow- with nerve sparring. I am in my late 40s. I have not decided. Also thinking of the post op side effects with incontinence being the most worrying.

Originally Posted by: Online Community Member

Hi all

Thanks for the replies

I should have added Gleeson 3+4=7 and 12 of 20 cores showing cancer to the original post but having pressed send could not work out how to amend it.

Hi Lyn. I guess what I was trying to say, rather badly, was that if the side effects of RT and RP are broadly similar and there is an equal chance of requiring further treatment then isn't it correct to say that after RP you can have RT but after going down the RT route originally further RT or RP is a no go or more difficult? I have only had contact with the Urologist post biopsy and after the PET scan Wednesday I should be seeing the "Team" in approximately 2 weeks when they should have all of the info they need. Nothing has been mentioned regarding nerve sparing or what type of treatment to have, the only thing he mentioned was that it was still contained in the capsule but was right on the edge of the RHS so if its on one side I would guess that 50% should hopefully be spared at least. Hopefully, between the MRI and the PET scan they should be able to determine if the cancer is fully contained in the prostate and in that case, after RP shouldn't I be reasonably confident of not requiring RT in the future?

I have ordered the Toolkit and hopefully this will clarify a few things and point me in the right direction. Knowing something of the radiologists/surgeons record or success rate would be a big factor in deciding which way to go if there is no definite prompt either way but the Welsh NHS seem to keep things close to their chest regarding this kind of information.

Best wishes

Ian

User

Posted 03 Apr 2025 at 21:12

Hi Ian

Hope you are doing better Did you request for the PET PSMA scan?

Originally Posted by: Online Community Member

Hi all

Thanks for the replies

I should have added Gleeson 3+4=7 and 12 of 20 cores showing cancer to the original post but having pressed send could not work out how to amend it.

Best wishes

Ian

User

Posted 03 Apr 2025 at 22:31

Hi Bd_O

Sorry to hear of your diagnosis. I did not have to request any of the tests, MRI, Bone scan or PET Scan, these were all arranged by the Urology dept although from diagnosis to the PET scan took 8mths and then a further 2mths to the MDT meeting. I was also advised to have the RARP but after speaking to the surgeon and the Oncologist I decided to go with RT. Nerve sparing was 100% no go on one side due to the tumour starting to break out and unlikely to be spared on the other side, The tumour also ran the length of the length of the prostate and was close to the apex which according to the surgeon made continence issues likely. I was told by the surgeon and oncologist that for patients under 65yrs of age RARP was almost always recommended. I have no doubt that RT was right for me but obviously this is not a recommendation for you and though undeniably the most difficult decision you will have to make, only you can decide which option to go for. I would say that there is no rush, take your time, speak to the surgeon if you decide to go the RARP route and ask the usual questions, is he/she is a high volume surgeon, likelihood of a successful outcome regarding continence and ED issues etc.

If you have any other questions feel free to message me directly or reply to the post and if I can help I certainly will.

Good luck with whatever you decide on.

Ian

User

Posted 03 Apr 2025 at 22:53

Hi Ian

Thanks for the response. I have spoken to only the specialist Nurse - she was the one that broke the news to me and the only one present to discuss the biopsy results with me during my post biopsy appointment. How long away (weeks/months) was your PET scan appointment from time of request?

I will take your advice of asking the usual questions onboard.

User

Posted 04 Apr 2025 at 16:33

Hi Bd_O

June 22 PSA 9.5

July 22 MRI

October 22 TP Biopsy

Dec 22 Bone scan

Jan 23 PET Scan

Feb 23 MDT meeting

March 23 meeting with surgeon

March 23 meeting with Oncologist

April 23 Started HT treatment

July 23 started RT

This is the rough timeline. Everything was organised by the Urology dept. The only thing I requested was a one to one meeting with the surgeon and the Onco after the MDT meeting as I wanted to be sure which was the best option for me.

Good luck, any other questions fire away.

Ian

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.