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Hi all, I'm newly diagnosed with Prostate cancer

User
Posted 13 Mar 2024 at 09:28

Where to begin?
With a sex scene of course, like an episode of The Sweeney!

So it's around 2006, which would make me 38 and I'm having drunken sex with a lady when I feel a sharp pain in my cock and call a halt to proceedings ouch! It's a bit sore for a few weeks and then I notice it's starting to look a bit crooked, a few weeks later and it's so crooked I can't bear to look at it, but after seeing a specialist and several months of healing and prescription Viagra things return to something like normal.

Fast Forward 18 years and due to the injury and the ageing process I decide it's time to seek help for ED and an appointment is made through my GP to see a Urologist at a local private hospital.

The appointment goes well and he suggests I take Cialis daily. He also organises blood tests.

I think no more of it until a week later when I get a call from his secretary one morning and she explains he needs to see me urgently, by now of course the alarm bells are ringing and as I'm driving over all sorts of thoughts are flying through my mind, including of course cancer, but surely not? I feel absolutely fine, play sport twice a week, drink moderately and have a healthy BMI.

A urine sample is taken on arrival and swiftly analysed so after a short wait he calls me through and explains that I have a PSA of 42 and as there is no sign of infection in the urine sample I very probably have cancer. A physical examination revealed a bump on the left side and after another blood sample was taken and I was told an urgent MRI scan would be booked I left the building in a state of shock.

When I got to the car I decided to ring my partner to arrange to meet her at home, but she sensed something was wrong and demanded I tell her what the problem was straight away, which I did.

It later transpired that she thought the dog must had died!

I didn't sleep well that night, but fortunately I didn't need to as I had an early morning flight to Alicante to catch and it was going to take more than cancer to stop me going to Benidorm!

The three days away gave my time to contemplate and come to terms with the situation. I did more walking and less drinking than usual, had a thoroughly pleasant time and sure enough when I got back I'd received an appointment for an MRI scan at the same hospital.

The scan wait was around 10 days and the day after the Urologist rang to say that it very much looked like cancer but didn't look to have spread to the lymph nodes or surrounding areas and his subsequent letter was noted T2c N0. What I didn't know at time was the significance of the lack of an M on the letter.

I still really don't know if the scan had been used to check for bone mets or even what the protocol is, but as I was told the cancer hadn't spread beyond the prostate I read this as relatively good news.

He also explained that they were very busy with biopsies but that he had spoken to a consultant at the BRI and he had agreed the referral.

As I'd got some definite news at this point I decided to speak to my mum, son and pregnant daughter about my condition. I put a positive spin on things and all took the news well.

I received the appointment for the biopsy and this took place 4 weeks after I was first told about the cancer, time seem to have stood still since my diagnosis but I'm guessing by NHS standards this timescale isn't too bad.

Pain thresholds are obviously different for everyone but I'm guessing by the look on the clinicians faces most people don't shriek, swear, arch their backs as if they've been possessed and stop breathing when they're subject to prostate biopsies! I thanked them and apologised once the pain had subsided, I was a bit sore on the long walk back to the car, but absolutely fine by that evening and could probably have played football. Parking is horrendous at the BRI there are rarely any spaces and the bays looked to have been marked out many years ago when cars were narrower and people not as fat and clumsy.

The MDT at the BRI meet to discuss cases on Mondays and I received a call on the Tuesday, he told me that my Gleason score was 7 and that I would need a bone scan and a PET to rule out metastasis before they could look at treatment options.

I'd pretty much resisted googling things until that point as I'd reasoned it would probably add to my anxiety rather than relieve it, but at this juncture I decided to have a look online and realised that with a PSA of 42 and no confirmation of the situation re Mets in bones, my positive spin looked more like wishful thinking. That week my thoughts had become more morbid, every other advert and soap storyline on the TV seemed to be cancer related and I was thinking about funeral songs.

Then I received the phone call,,, I was a Grandad! I was ridiculously happy that day and when daughter and grandson arrived safely home the next day I got to hold him for the first time I was totally overwhelmed and shed a few tears, which took me by surprise as I genuinely couldn't recall the last time I'd done so, bugger I must be going soft in my old age!

Around this time I'd began reading some of the threads on this forum, I found them very informative but also inspiring I was particularly drawn to the posts by the contributors on the advanced cancer section who's dignity and courage shone through their posts, sadly I suspect many of them are no longer with us, but fortunately there words of wisdom are.

The PET passed without incident, the bone scan less so, I was the last appointment of the day and apparently the machine had been playing up all day, I noticed the machine had a Philips badge on it, at least it wasn't made by Sharp!

2 software reboots and 90 minutes later and we were all done. This took place on the Monday 4th March and I'd already been booked an appointment with a consultant urologist on Thursday 7th, the radiologist was aware of this and assured me the scan would assessed in time for the appointment.

I'd decided to ask my daughter to attend the appointment with me, she's very calm and it gave us a chance for a good chat on the way there,

The appointment was at St Luke's, parking is better there as is the cafe. We turned up a bit early and sat in the waiting area which was quite busy so I was a bit surprised to hear my name called out straight away, I was given forms to fill in regarding ED and bladder function and directed towards some weighing scales and a height measuring stand and debated with myself, my daughter, the clinician and another bloke who was waiting whether taking my shoes would increase or decrease my BMI, in the end I left them on and it came in at 25.1, so despite my earlier assertion that I have a healthy BMI I'm actually marginally overweight!

We entered the consultants room and following the introductions the surgeon informed me that he believed I was suitable for RP.

So I don't have bone metastasis?” I asked

No” he said and carried on in a matter of fact way. I squeezed me daughters hand and we exchange a smile of relief. At times I think some of the clinicians struggle to put themselves into the position of patients as I think anyone who'd found themselves in a similar position to mine would have been very nervous attending that appointment and hugely relieved to hear that there had been no indication of spread, obviously it's not quite as simple as that as there could be cancer that hasn't shown up, but for now I'll take it as good news.

In total it's taken 7 weeks from discovering I have probable cancer to a meeting where a treatment was offered and he estimated it would be 5 weeks before I was scheduled for surgery. I have a telephone appointment with an Oncologist in 2 weeks time and am hoping he will have put together an RT/HT option, like many I'm not sure which route to take at the moment.

The MDT assessed it as Left T3a, as opposed to the initial T2c, I'm guessing that this is just a difference of opinion and that's its a marginal call and Gleason score left target was 7 (4+3) 3/3 50%

I got a phone call yesterday and was told I'll be scheduled for a PMSA scan, fair enough, we need an accurate diagnosis before proceeding with any treatment, but it feels like I've twice been told there's no spread and subsequently been scheduled for more sensitive scans to look for it, which seems rather cruel, why not do the PMSA earlier?



User
Posted 08 Apr 2024 at 00:17

Originally Posted by: Online Community Member
Lots of men go on a low inflamation diet to prevent prostate cancer progression

If so, they're deluded.

Refusing medical advice and treatment for diagnosed prostate cancer and relying on diet to stop progression is a sure path to advanced cancer and ultimately, death.

Jules

User
Posted 13 Mar 2024 at 09:28

Where to begin?
With a sex scene of course, like an episode of The Sweeney!

So it's around 2006, which would make me 38 and I'm having drunken sex with a lady when I feel a sharp pain in my cock and call a halt to proceedings ouch! It's a bit sore for a few weeks and then I notice it's starting to look a bit crooked, a few weeks later and it's so crooked I can't bear to look at it, but after seeing a specialist and several months of healing and prescription Viagra things return to something like normal.

Fast Forward 18 years and due to the injury and the ageing process I decide it's time to seek help for ED and an appointment is made through my GP to see a Urologist at a local private hospital.

The appointment goes well and he suggests I take Cialis daily. He also organises blood tests.

I think no more of it until a week later when I get a call from his secretary one morning and she explains he needs to see me urgently, by now of course the alarm bells are ringing and as I'm driving over all sorts of thoughts are flying through my mind, including of course cancer, but surely not? I feel absolutely fine, play sport twice a week, drink moderately and have a healthy BMI.

A urine sample is taken on arrival and swiftly analysed so after a short wait he calls me through and explains that I have a PSA of 42 and as there is no sign of infection in the urine sample I very probably have cancer. A physical examination revealed a bump on the left side and after another blood sample was taken and I was told an urgent MRI scan would be booked I left the building in a state of shock.

When I got to the car I decided to ring my partner to arrange to meet her at home, but she sensed something was wrong and demanded I tell her what the problem was straight away, which I did.

It later transpired that she thought the dog must had died!

I didn't sleep well that night, but fortunately I didn't need to as I had an early morning flight to Alicante to catch and it was going to take more than cancer to stop me going to Benidorm!

The three days away gave my time to contemplate and come to terms with the situation. I did more walking and less drinking than usual, had a thoroughly pleasant time and sure enough when I got back I'd received an appointment for an MRI scan at the same hospital.

The scan wait was around 10 days and the day after the Urologist rang to say that it very much looked like cancer but didn't look to have spread to the lymph nodes or surrounding areas and his subsequent letter was noted T2c N0. What I didn't know at time was the significance of the lack of an M on the letter.

I still really don't know if the scan had been used to check for bone mets or even what the protocol is, but as I was told the cancer hadn't spread beyond the prostate I read this as relatively good news.

He also explained that they were very busy with biopsies but that he had spoken to a consultant at the BRI and he had agreed the referral.

As I'd got some definite news at this point I decided to speak to my mum, son and pregnant daughter about my condition. I put a positive spin on things and all took the news well.

I received the appointment for the biopsy and this took place 4 weeks after I was first told about the cancer, time seem to have stood still since my diagnosis but I'm guessing by NHS standards this timescale isn't too bad.

Pain thresholds are obviously different for everyone but I'm guessing by the look on the clinicians faces most people don't shriek, swear, arch their backs as if they've been possessed and stop breathing when they're subject to prostate biopsies! I thanked them and apologised once the pain had subsided, I was a bit sore on the long walk back to the car, but absolutely fine by that evening and could probably have played football. Parking is horrendous at the BRI there are rarely any spaces and the bays looked to have been marked out many years ago when cars were narrower and people not as fat and clumsy.

The MDT at the BRI meet to discuss cases on Mondays and I received a call on the Tuesday, he told me that my Gleason score was 7 and that I would need a bone scan and a PET to rule out metastasis before they could look at treatment options.

I'd pretty much resisted googling things until that point as I'd reasoned it would probably add to my anxiety rather than relieve it, but at this juncture I decided to have a look online and realised that with a PSA of 42 and no confirmation of the situation re Mets in bones, my positive spin looked more like wishful thinking. That week my thoughts had become more morbid, every other advert and soap storyline on the TV seemed to be cancer related and I was thinking about funeral songs.

Then I received the phone call,,, I was a Grandad! I was ridiculously happy that day and when daughter and grandson arrived safely home the next day I got to hold him for the first time I was totally overwhelmed and shed a few tears, which took me by surprise as I genuinely couldn't recall the last time I'd done so, bugger I must be going soft in my old age!

Around this time I'd began reading some of the threads on this forum, I found them very informative but also inspiring I was particularly drawn to the posts by the contributors on the advanced cancer section who's dignity and courage shone through their posts, sadly I suspect many of them are no longer with us, but fortunately there words of wisdom are.

The PET passed without incident, the bone scan less so, I was the last appointment of the day and apparently the machine had been playing up all day, I noticed the machine had a Philips badge on it, at least it wasn't made by Sharp!

2 software reboots and 90 minutes later and we were all done. This took place on the Monday 4th March and I'd already been booked an appointment with a consultant urologist on Thursday 7th, the radiologist was aware of this and assured me the scan would assessed in time for the appointment.

I'd decided to ask my daughter to attend the appointment with me, she's very calm and it gave us a chance for a good chat on the way there,

The appointment was at St Luke's, parking is better there as is the cafe. We turned up a bit early and sat in the waiting area which was quite busy so I was a bit surprised to hear my name called out straight away, I was given forms to fill in regarding ED and bladder function and directed towards some weighing scales and a height measuring stand and debated with myself, my daughter, the clinician and another bloke who was waiting whether taking my shoes would increase or decrease my BMI, in the end I left them on and it came in at 25.1, so despite my earlier assertion that I have a healthy BMI I'm actually marginally overweight!

We entered the consultants room and following the introductions the surgeon informed me that he believed I was suitable for RP.

So I don't have bone metastasis?” I asked

No” he said and carried on in a matter of fact way. I squeezed me daughters hand and we exchange a smile of relief. At times I think some of the clinicians struggle to put themselves into the position of patients as I think anyone who'd found themselves in a similar position to mine would have been very nervous attending that appointment and hugely relieved to hear that there had been no indication of spread, obviously it's not quite as simple as that as there could be cancer that hasn't shown up, but for now I'll take it as good news.

In total it's taken 7 weeks from discovering I have probable cancer to a meeting where a treatment was offered and he estimated it would be 5 weeks before I was scheduled for surgery. I have a telephone appointment with an Oncologist in 2 weeks time and am hoping he will have put together an RT/HT option, like many I'm not sure which route to take at the moment.

The MDT assessed it as Left T3a, as opposed to the initial T2c, I'm guessing that this is just a difference of opinion and that's its a marginal call and Gleason score left target was 7 (4+3) 3/3 50%

I got a phone call yesterday and was told I'll be scheduled for a PMSA scan, fair enough, we need an accurate diagnosis before proceeding with any treatment, but it feels like I've twice been told there's no spread and subsequently been scheduled for more sensitive scans to look for it, which seems rather cruel, why not do the PMSA earlier?



User
Posted 04 Apr 2024 at 12:57

Originally Posted by: Online Community Member
radiotherapy can cause cancers later in life

Pelvic RT increases the risk of bowel cancer by around 4% at 10 - 20 years post-treatment

In England, the risk of bowel cancer for men is 7% - RT would increase that risk to around 7.3% ... much less risky than not having the PCa treatment that might cure you!  

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

User
Posted 26 Apr 2024 at 15:10

Q1 Imagine Her Majesty the Queen was calling for tea at your house, what preparations would you make?

A1. I would definitely move the underwear I left to soak in the bidet. After discussing national debt and world peace I'd ask if she just uses her bidet for pre-soaking laundry, or if the french president had told her any other uses.

p.s. I know it's KC III now, so perhaps Camilla does the laundry stuff, and KC just has to put the bins out.

Dave

User
Posted 13 Mar 2024 at 19:59

That's a great intro for your PCa story Richard. I can't wait for the next chapter. I imagine your head is still in the clouds but once you have spoken with the oncologist and chosen which route to take (never an easy decision) then things will start to calm down. Your clinicians have done a very thorough job on the diagnostic testing. PSMA scans are expensive and are not available everywhere. This might be why they held off until they decided it would definitely be beneficial for you to have one. I think the upgrade to T3a, along with the PSA of 42 probably triggered the PSMA scan. Nothing is certain but from the tests you have had it appears not to have spread which is the important thing. I was PSA 36, Gleason 8, T3bN0M0 on diagnosis. I didn't have the benefit of a PSMA PET scan but the surgeon decided to remove local lymph nodes (34 in total) during the prostatectomy. One of them turned out to be positive. Good luck with your journey.

User
Posted 06 Apr 2024 at 11:38

https://ascopubs.org/doi/10.1200/JCO.20.03282

I thought I'd post the results from this trial as always the results should be treated with caution.

It's a trial comparing whole pelvis RT to Prostate only RT for high risk and very high risk Pca patients and enrolled between 2011-2017 so it's a lot more recent than a lot of studies that are used to predict outcomes.

There's a lot to wade through and stats isn't my strong point, but for both groups the low 5 year reoccurrence rate does look encouraging, it was much lower than they expected, long may the study group continue to make it difficult to detect the effect!

 

"Given the higher risk profile of the included patients, the 5-year BFFS was estimated to be 45% with PORT, to be improved to 62% with WPRT. With a two-sided alpha error of .05 and 80% statistical power, a total of 120 events were required to detect the effect. Totally, 224 patients were required to be randomly assigned (112 in each arm), allowing for a 5% rate of loss to follow-up.

After a study period of 9 years, only 36 events of biochemical failure were observed, which was considerably lower than anticipated and statistically planned for. It was considered by the trial steering committee that the planned number of events for the primary end point may need an inordinately long time to occur or may never be reached."

 

Edited by member 06 Apr 2024 at 11:41  | Reason: Not specified

User
Posted 10 Apr 2024 at 07:14

Thanks for the post Lizzo.

Clearly life is not easy for you and your husband for a number of reasons, including age and a sedentary lifestyle plus you've only given us a part of it.

This place has been helpful and supportive to me and a huge number of others [men and the partners/wives] so I hope it can do the same for you.

Geoff has a psa test coming up soon, plus you might have some scans to consider. In the spirit of this community I hope you'll share whatever happens next and maybe benefit from an exchange of ideas.

Having bulldozed Richard99's thread [I'm talking about myself], maybe it's time to take this topic elsewhere. Could I suggest to you, Lizzo, that you start your own thread? This would have the advantage of not getting ideas tangled up between different treatments.

In addition, if you're willing to add some details to your/Geoff's profile it makes it possible for others to see where you've been and where you're going before responding to your thoughts.

I know that when I was first diagnosed with cancer and told the treatment choices, I searched for less threatening options than the ones I was offered. I've seen other people here make the same comment but the reality is, that unless a treatment has a proven track record it's unlikely to succeed.

I wish you both well. You might well have a significant battle ahead of you but from what you have said conventional treatments still offer Geoff a good chance of surviving cancer for many years.

Me? Now aged 77, previously diagnosed G9, psa 11, locally advanced with 3 mets, now through HT/RT the treatment with no signs of recurrence. That's as good as it gets with this curse but there's no reason that you both can't get through this. Don't let the health system get you down!

Jules

Edited by member 10 Apr 2024 at 09:59  | Reason: Not specified

User
Posted 13 Mar 2024 at 11:40

Originally Posted by: Online Community Member

Where to begin?
With a sex scene of course, like an episode of The Sweeney!

Hi Richard. Were you Regan or Carter? 😄

If you were as speedy as either of them, your pain down below, was probably caused because the lady involved had not been given time to take her tights off. 

I'd just joined the Old Bill as that series was finishing. At that time, most of the CID thought they were in the Flying Squad. They tried to emulate Jack and George, but failed miserably.  

What a brilliant and very funny first post. Congratulations Grandad. 

Welcome to the forum mate. I'm sorry that you've had to find us but glad that you have. Your sense of humour, even if it's tested at times, will help you through your journey.

I was also T3a, Gleason 9(4+5) and had robotic surgery just over a year ago. Here's a link to how I've fared so far.

https://community.prostatecanceruk.org/posts/t30214-Almost-a-year-on-after-RARP 

Best of luck mate.

Edited by member 13 Mar 2024 at 12:13  | Reason: Additional text.

User
Posted 13 Mar 2024 at 13:14

Welcome Richard, what an interesting first post.

So You broke your precious manhood? Ouch!😱 I too have Peyronie’s disease but not caused by too much action in the bedroom department, and am using a Vacum Pump to slowly correct my kinky winky!đŸ¤ŖđŸ¤ŖđŸ¤Ŗ

Sounds like you’re on the way to getting a treatment plan in place and you’ll feel better when it is.

Good luck with whatever treatment you choose and please do keep us posted on your progress.

Derek

Edited by member 13 Mar 2024 at 22:21  | Reason: Misread post

User
Posted 13 Mar 2024 at 23:03

Thank you for the warm welcome gents.

I looked at each of your bios and it's made me feel fortunate I wasn't going through this during Covid regulations.

Some good news today in that my telephone appointment with the oncologist has been moved forwards a week.

User
Posted 04 Apr 2024 at 16:02

The great thing was sharing these stories is we can sometimes see some similarities.  I also went to the doctors for one thing (a cough)  and ended up via a PSA test with prostate cancer.  It was the waiting that was the worst thing,  scans tests etc,  and I nearly broke the poor nurses hand during my biopsy.  At one point I thought they were looking for my tonsils.

Diagnosed in March 2023  Operated on in June 2023,  I now lead a relatively normal life,  with the ED being the main change.  It is a very emotional time and urge you to confide in loved ones or share in this group.   It really is  a big deal for all of us.  I realise I am blessed and have utter admiration for all those fighting their own battles.  I wish you well.

User
Posted 08 Apr 2024 at 22:41

Microcolei, I think you have misread it - Lizzo is responding to Richard99 - I don't think she is married to him! 


Lizzo's husband (who is not Richard99) has supposedly been diagnosed with advanced PCa and was prescribed HT which Lizzo says she has put in the garage because she doesn't agree with the doctors and years of medical expertise - she is apparently treating him with her hormone patches instead. We have no information about how Lizzo's husband feels about missing out on his chance of a longer life.

Edited by member 08 Apr 2024 at 22:46  | Reason: Not specified

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

User
Posted 10 Apr 2024 at 07:42

Originally Posted by: Online Community Member

My husband is 76 he had da Vinci  robotic surgery in 2018 psa 8.63 gleason 4+4 pT3  we both think he is very lucky to have had an excellent surgeon he recovered well then begining of 2022 his psa reached 0.09 

I'm 10 years younger than Geoff but had a very similar PSA, Cancer staging and Gleason score. I had the same op about 14 months ago. So far my PSA has remained undetectable but on the back of my mind I dread recurrence.

Best of luck to you both if further treatment is deemed necessary. 

 

User
Posted 16 Apr 2024 at 20:26

Ha ha ha yes the ad-cal are anything but chewy, more like chalk I think designed to reduce the farting. The Prostap injections in the belly no problem although I think after my first one after a couple of days it did feel like a wasp sting for a while. I also missed my radiotherapy pre-planning call, so don’t worry they will go through it with you when you go (it’s just a checklist of side effects etc but you’re in for a penny so c’est la vie eh?). 
I do certainly hope that you fair better than me on Prostap, beware it might creep up on you! 😱. 
Good luck

Spingebob ps my PSA now 0.02 đŸ˜ŦđŸ˜ŦđŸ˜ŦđŸ˜ŦđŸ˜Ŧ

User
Posted 18 Apr 2024 at 17:30

My Radiologist must have reviewed my notes before our missed telephone appointment, hence he'd booked me in for the flow test and bladder scan!

I turned up at the allocated time, but despite joining a waiting room full of people I was swiftly ushered through.

When the nurse booking the test had telephoned she'd asked that I turn up with a full bladder.

I enquired as if she wanted a normally full bladder or a "super full bladder"

"A normally full bladder will be just fine", she replied in a tone of voice that indicated she thought she was dealing with someone a few shillings short of a pound.

400ml of apple juice imbibed and 400ml similar looking expelled in what I thought a respectable time, a few seconds later the teleprinter sprung to life as if the first footy result of the afternoon was in and a respectable peak flow of 30ml/sec was recorded and a scan showed a residual of about 25ml.

I'd fully expected to pee and pee off, but unbeknown to me I'd been allocated a slot with a Urologist.

He was very pleasant and genial and explained that he'd fully expected to be booking me in for a TURP on the evidence of my previous Flow test. I explained to him that it had been carried out 20 minutes after I'd given a urine sample to check for infection and 10 minutes after I'd been first told that I almost certainly had cancer, he smiled and stated that he too would have struggled to pee on demand in those circumstance.

One thing that did suprise and slightly concern me was that the PSA test that was taken just before I started on Bical came back as 32. I know these tests can vary a bit but that's quite a lot less than my initial 42 from 3 months ago and I can think of no good reason for such a decline, but he didn't seem unduly worried and was viewing it as a positive I'm less than convinced and would have been happier with 42 again or a little bit higher.

He said my rescheduled appointment would be in a couple of weeks and we rambled on about dads, diet and dogs, but I did use the opportunity to bring up Abiraterone......

 

Edited by member 18 Apr 2024 at 17:40  | Reason: Not specified

User
Posted 19 Apr 2024 at 13:05

Thanks Adrian,

I've learned so much from reading bios and threads on this forum, I'm nowhere near knowledgeable to offer any advice to others, but pleased that if I've managed to raise an occasional smile.

 

Edited by member 19 Apr 2024 at 23:58  | Reason: Not specified

User
Posted 20 Apr 2024 at 01:52

Originally Posted by: Online Community Member
I'm less than convinced and would have been happier with 42 again or a little bit higher.

Must be the first time anyone here has wished for a higher psa result!

I reckon the 32 is probably fine.

Jules

User
Posted 12 May 2024 at 13:18

Reminds me that I need to get up on my roof to see if I can spot the source of an occasional leak. Flat roof which was firbre glassed so shouldn’t ever leak unless the cowboys didn’t apply it properly or screwed up the join with the neighbours ancient felt.

I’ve probably been in that same orifice in Jimmys when I was consulted about my brachy and EBRT options. I seem to remember having to fill in a mountain of forms about my sex capabilities. And I took the stairs too, much to the surprise of a guy I sought directions from. Good luck with your choice of treatment options.

Just watching the play-offs first leg, it’s 0-0, half time and I’m bored out my head. But guess that Leeds fans will take that as job done so far.

Show Most Thanked Posts
User
Posted 13 Mar 2024 at 11:40

Originally Posted by: Online Community Member

Where to begin?
With a sex scene of course, like an episode of The Sweeney!

Hi Richard. Were you Regan or Carter? 😄

If you were as speedy as either of them, your pain down below, was probably caused because the lady involved had not been given time to take her tights off. 

I'd just joined the Old Bill as that series was finishing. At that time, most of the CID thought they were in the Flying Squad. They tried to emulate Jack and George, but failed miserably.  

What a brilliant and very funny first post. Congratulations Grandad. 

Welcome to the forum mate. I'm sorry that you've had to find us but glad that you have. Your sense of humour, even if it's tested at times, will help you through your journey.

I was also T3a, Gleason 9(4+5) and had robotic surgery just over a year ago. Here's a link to how I've fared so far.

https://community.prostatecanceruk.org/posts/t30214-Almost-a-year-on-after-RARP 

Best of luck mate.

Edited by member 13 Mar 2024 at 12:13  | Reason: Additional text.

User
Posted 13 Mar 2024 at 13:14

Welcome Richard, what an interesting first post.

So You broke your precious manhood? Ouch!😱 I too have Peyronie’s disease but not caused by too much action in the bedroom department, and am using a Vacum Pump to slowly correct my kinky winky!đŸ¤ŖđŸ¤ŖđŸ¤Ŗ

Sounds like you’re on the way to getting a treatment plan in place and you’ll feel better when it is.

Good luck with whatever treatment you choose and please do keep us posted on your progress.

Derek

Edited by member 13 Mar 2024 at 22:21  | Reason: Misread post

User
Posted 13 Mar 2024 at 19:59

That's a great intro for your PCa story Richard. I can't wait for the next chapter. I imagine your head is still in the clouds but once you have spoken with the oncologist and chosen which route to take (never an easy decision) then things will start to calm down. Your clinicians have done a very thorough job on the diagnostic testing. PSMA scans are expensive and are not available everywhere. This might be why they held off until they decided it would definitely be beneficial for you to have one. I think the upgrade to T3a, along with the PSA of 42 probably triggered the PSMA scan. Nothing is certain but from the tests you have had it appears not to have spread which is the important thing. I was PSA 36, Gleason 8, T3bN0M0 on diagnosis. I didn't have the benefit of a PSMA PET scan but the surgeon decided to remove local lymph nodes (34 in total) during the prostatectomy. One of them turned out to be positive. Good luck with your journey.

User
Posted 13 Mar 2024 at 21:50

Originally Posted by: Online Community Member

It later transpired that she thought the dog must had died!

That made me laugh out loud Richard. 

Great post. It's a journey none of us wanted to be invited  to join in on. It can turn out well, or less well, however regardless of the start and end points you'll find a lot of support and humour here. 

All the best,

Mark

 

User
Posted 13 Mar 2024 at 23:03

Thank you for the warm welcome gents.

I looked at each of your bios and it's made me feel fortunate I wasn't going through this during Covid regulations.

Some good news today in that my telephone appointment with the oncologist has been moved forwards a week.

User
Posted 14 Mar 2024 at 16:25

Hi Richard,

Congratulations on becoming a Grandad!

I had my bone scan down at the BRI and can confirm that the parking there is a nightmare. Luckily, my missus was driving and she was able to deposit me at the entrance having found nowhere to park. I fully expected her to still be driving around Daisy Hill trying to find somewhere when I came out. Of course, back in the old days there never used to be a problem plonking the car on Squire Lane outside the Girls School but then times have changed since the days of the trolly bus.

My bone scan experience turned out to be quite a good do, because they allowed me out to have a pint in between the dye injection and the scan. Such a treat, I was able to get my first pint in a while given the circumstances at the time, even better as the missus was driving and took me up to the Dog and Gun near Oxenhope for a pint of Landlord and a bowl of soup. But then from such highs it was back down to earth as she couldn't find anywhere to park again when we got back for the scan. 

If you end up going down the RT route then you'll probably end up going into Jimmys everyday. As we come to expect, everything in Leeds is up a couple of notches compared to Bradford, unfortunately it seems forever the case with the footy 🙁 (we can't even beat FGR 😡, we'd struggle against Snow White and the seven dwarfes!), anyway, so it is, that the car parking at Jimmys is no problem at all because they have a multi-story car park right next door that reaches right up into the clouds. And it's free for those having the radiation đŸ˜Ŧ. You see, there is a ray of light in every situation.

I hope everything works out for you and that your treatment path is a smooth one.

Spongebob

User
Posted 19 Mar 2024 at 13:37

Unfortunately my meeting with the Oncologist has been delayed, I'm now scheduled to meet him on 28/03, on the plus side this will now be face to face.

Obviously I haven't seen what plan he's proposing, but I am inclined to go down the HT/RT route. I do see it as a positive that an RP was even proposed, but the surgeon did have concerns regarding my PSA 42 and the possibility of micro mets and referenced a possible need for RT to mop up any cancer he missed.

It's only over the last weeks I've realised the significance of been initially referred to Bradford rather than Leeds.

Bradford is very much geared towards surgery which they perform with their fancy new Da Vinci machines, where as Leeds is where Radiotherapy is performed, hence I will be meeting with an Oncologist who is visiting from Leeds. 
Does anyone know whether the reverse is true, i.e. if my initial referral was in Leeds and I wanted to go down a surgical route would I have been meeting a surgeon based in Bradford? If so then if you are diagnosed with PCa and have already formed a strong view on which treatment you'd prefer you may well be better asking for a referral to the correct City as early as possible. Who knows if I'd not endured the detour I might already have a rack like Sam Fox this Spring.

Spongebob, many thanks, I quite like Landlord, it's certainly a lot better than Mansfied!😂.

Am I correct in reading on your Bio that having waited several weeks for the result of you Biopsy you stared on HT  that very day?

Chris. you're correct.
I was viewing the PMSA as another hoop to jump through before surgery, but it will actually be invaluable resource in determining my RT needs so I should be thankful I'm having one.

Decho, crikey that's been a hell of slog through the HT, I'm pleased to hear it's nearly over.

 

 

Edited by member 19 Mar 2024 at 14:50  | Reason: poor spelling

User
Posted 19 Mar 2024 at 14:08

Hi,

Yes, I was put onto HT straight away on the biopsy results day. It wasn’t several weeks waiting for the results, just a couple, I didn’t put in the exact dates in the bio. And actually I would have had them a week earlier if I hadn’t been on a jolly on the Isle of Skye. 
Sorry, I don’t know about the Bfd/Leeds question but would be surprised if people in Leeds are referred to BRI - I know nothing though đŸ˜Ŧ.

The prospect of growing boobs like Sam Fox, just one of the many worries about poss side effects đŸ˜ŗ.

All the best

Spongebob

User
Posted 20 Mar 2024 at 20:29

Richard when I was diagnosed my NHS Trust did not have a Da Vinci machine. Patients opting for robotic surgery were referred to a neighbouring NHS Trust. It might be the case that Leeds doesn't have one but I would be surprised if that was the case. Maybe it is two Trusts actually working together for the common good. Does that really happen in the NHS?😃

User
Posted 02 Apr 2024 at 21:33

As previously indicated I've decided on RT/HT, I met up with the Radiologist on 28/03/2024 and he proposed the following.

EBRT 20 fractions to prostate 

with the addition of and/or

1 Brachytherapy

2 RT to Lymph nodes

Brachytherapy options are LDR or HDR, but given the warnings re contact with infants etc with the implanted seeds I would only consider the latter.

I'm not totally sure but I think there'd be a lower dose of EBRT to the prostate if I added in the Brachy.

The other thing he mentioned was a clinical trial whereby they would be using 5 factions of EBRT, I'm guessing this is follow up to the successful one using a similar methodology on lower staged cancer.

I struggled to take all the details of the trial in but believe the RT to the wider pelvic area would be randomised. Am I likely to get more resources thrown at me if I'm involved with a trial, scans etc?

Given my high PSA and viewing this as my best and probably only chance of a curative solution I'm tempted to have the full Monty, but I am wondering if this would push me towards my lifetime RT quota, should the future guidelines to zapping mets  become more relaxed.

I had a PSA test on my way out and picked up 28 x 50g Bical and my first batch of Prostrap. I was slightly suprised that he didn't see the need for further PSA tests before RT treatment scheduled in a few months,.

without one how would we even know the HT was working?

Has anyone else experienced similar?

Could I ask my GP for one, perhaps a month after the Prostrap injection?

I notice Andy62 referenced some papers that indicate that commencing RT when PSA approached Nadir led to improved outcomes in high risk patients, but this doesn't seem to be anything taken into account in the UK

I was very happy and relieved to finally have something in my hand that could actually impact on the course of the cancer. I necked the first tablet before I'd even left the car park.

I realise this is a low dose of Bical, but 6 days in I've not noticed any effects as yet, in fact it was a Sunny day up North today and as I drove through the village my eyes were still drawn to women in their summer outfits, but perhaps it was just reflex or muscle memory, either way women may not give me a stiff cock these days, but they can still give me a stiff neck.

Any input or insight re my treatment options would be welcomed.

 

 

 

Edited by member 03 Apr 2024 at 08:46  | Reason: Not specified

User
Posted 03 Apr 2024 at 18:46

Hi Richard,

I remember having a similar conundrum over which radiography treatment choices, although I didn’t have any ‘trial’ options. In the end, and I’ve got to say not based on much, I opted for the HDR brachy followed by 20x EBRT. The HDR just seamed to make the most sense to me, I liked the idea of it properly targeting the cancer and then giving it a proper blast (If you’re going to kick something then make sure you properly welly it!)

Like you I was a bit bemused by the lack of PSA testing, my last PSA test was done prior to my 6th chemo way back last November, and I’ve had to arrange my next one at my local GP which actually will be next Monday - I’m hoping the score will be zilch 🤞. Also, a note on the brachy itself - I found the procedure quite straightforward, it involved an overnight stay and a catheter đŸ˜Ŧ.

The 20x EBRT, I found to be a right bind, a daily trudge, but it involved a one to one and half hour each way trip for it everyday. I was certainly glad when it was all over. But yes, good question- how does anyone know that all this has worked? No PSA test or scans.

I really hope you continue to surf away without feeling any adverse effects from the bicalutamide/ Prostap. I remember seeming equally unaffected at the beginning, but for me I am finding that it’s a different story 9 months down the line. Prostap is wiping me out, even this morning I went straight to bed again after getting up for breakfast â˜šī¸. I believe that everyone is affected differently so fingers crossed that you get away more lightly.

Good luck with your decision making and all the best with your treatment. 
Spongebob.

User
Posted 03 Apr 2024 at 19:34

Cheers Bob,

Your comprehensive detailing of events has given me a good idea of what to expect, gulp! It all sounds to have gone fairly smoothly, maybe you'll get some time off for good behaviour re the prostrap?

 

Straight back to bed after breakfast, it must have been one hell of a fry up!

.. and I def spoke to soon re the Bical, because for some reason I had nipples like Kim Basinger this afternoon and was craving all sorts of stodgy/sugary crap in the supermarket, I think I'll have to do food shopping daily, as I have limited will power.

 

 

Edited by member 03 Apr 2024 at 19:36  | Reason: Not specified

User
Posted 04 Apr 2024 at 10:35

Hi 

I'm not a medical person but I would like to raise 2 points 

Your high psa and low  gleason score suggests  inflammation is a major issue with you  ?

Given your ( relatively ) young age why are you not looking at the option or were you not given the option of surgery? 

I read recently that surgery is offered to younger guys bc radiotherapy can cause cancers later in life and (all being well) you are looking at another possible  20 years to live with after affects of RT

you wouldn't need ADT if you had surgery but ED may be a problem 

Like I said I am by no means a medical person but my husband has prostate cancer and I have read an awful lot about it and read many personal stories 

I'm not advocating or advising anything but you need to weigh everything up 

Your insomnia suggests you are worried 

 

Edited by member 04 Apr 2024 at 10:37  | Reason: Add more info

User
Posted 04 Apr 2024 at 12:47

Hi Lizzo,

Thank you for commenting.

I've not been a great sleeper for a while, I tend to be woken once a night by my bladder these days and it can take a while to drop back off, I dare say it afflicts many on this forum.

The high PSA (42 on diagnosis and probably higher now) is indeed a major factor in my considerations, it doesn't really equate to the Biopsy, Gleason 4+3 and size of prostate and tumours, so there's a fair chance that I already have undetectable cancer outside of the tumour, hopefully just in the pelvic area, so RT directly to the prostate and a lower dose to the pelvic area and 2 years HT looks the best way of attempting to kill it all.

It's got a prophylactic element an each way bet in gambling parlance and that's how I'm viewing the treatment decision partly a gamble based on my diagnosis and how it matches up to the stats that are out there and partly an act of faith, technology v The surgeon's (robotic) hand, balanced against QOL and the short term/long term side effects.

I suppose I'm one of life's pessimists as I'd definitely take 10/15 relatively healthy years even with the prospect of other cancers further down the line.

I was given the option of surgery, but he seemed to be already factoring in salvage RT, if I was T2 a/b and PSA<15, I'd be very tempted by the surgery.

Best wishes to you and your husband, I'm hoping and assuming he has a lower staging than myself

 

 

Edited by member 04 Apr 2024 at 13:05  | Reason: Not specified

User
Posted 04 Apr 2024 at 12:57

Originally Posted by: Online Community Member
radiotherapy can cause cancers later in life

Pelvic RT increases the risk of bowel cancer by around 4% at 10 - 20 years post-treatment

In England, the risk of bowel cancer for men is 7% - RT would increase that risk to around 7.3% ... much less risky than not having the PCa treatment that might cure you!  

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

User
Posted 04 Apr 2024 at 16:02

The great thing was sharing these stories is we can sometimes see some similarities.  I also went to the doctors for one thing (a cough)  and ended up via a PSA test with prostate cancer.  It was the waiting that was the worst thing,  scans tests etc,  and I nearly broke the poor nurses hand during my biopsy.  At one point I thought they were looking for my tonsils.

Diagnosed in March 2023  Operated on in June 2023,  I now lead a relatively normal life,  with the ED being the main change.  It is a very emotional time and urge you to confide in loved ones or share in this group.   It really is  a big deal for all of us.  I realise I am blessed and have utter admiration for all those fighting their own battles.  I wish you well.

User
Posted 04 Apr 2024 at 18:00

Originally Posted by: Online Community Member

Hi Lizzo,

Thank you for commenting.

I've not been a great sleeper for a while, I tend to be woken once a night by my bladder these days and it can take a while to drop back off, I dare say it afflicts many on this forum.

The high PSA (42 on diagnosis and probably higher now) is indeed a major factor in my considerations, it doesn't really equate to the Biopsy, Gleason 4+3 and size of prostate and tumours, so there's a fair chance that I already have undetectable cancer outside of the tumour, hopefully just in the pelvic area, so RT directly to the prostate and a lower dose to the pelvic area and 2 years HT looks the best way of attempting to kill it all.

It's got a prophylactic element an each way bet in gambling parlance and that's how I'm viewing the treatment decision partly a gamble based on my diagnosis and how it matches up to the stats that are out there and partly an act of faith, technology v The surgeon's (robotic) hand, balanced against QOL and the short term/long term side effects.

I suppose I'm one of life's pessimists as I'd definitely take 10/15 relatively healthy years even with the prospect of other cancers further down the line.

I was given the option of surgery, but he seemed to be already factoring in salvage RT, if I was T2 a/b and PSA<15, I'd be very tempted by the surgery.

Best wishes to you and your husband, I'm hoping and assuming he has a lower staging than myself

 

 

 your high psa may be  due to inflamation not a spread of prostate cancer 

Inflamation could also be causing your bladder problems 

 you should look into a low inflamation diet 

 

Edited by member 04 Apr 2024 at 19:37  | Reason: Not specified

User
Posted 04 Apr 2024 at 20:41

Certainly an informative and interesting read! I hope your treatment choices work out.

Just commenting briefly on your biopsy experience. Reading posts on this forum was a great reassurance to me after my own very recent TP biopsy. (I’ve posted about my own ongoing experience in a separate thread.) The agony I felt during the half hour or so it lasted was why I chose my nick. I’m not sure why the medical folk aren’t more accurate about just how painful the TR biopsy procedure can be, nor why phrases like “noticing a little blood in your urine” etc are used when the reality for me and others has been more like a scene from a horror movie. The people performing these procedures day in day out surely know the score and crushed hands, profanities and damaged ear drums must be a regular occurrence. It’s a pity the screams don’t carry through closed doors and the aftercare descriptions aren’t such understatements. Not that this would lessen the pain etc. But we’d know what to expect better and it may save a few kindly nurses from crushed hands. (I accidentally clenched my nurse’s hand while she was adjusting my gown as I writhed during the procedure and didn’t even known I was holding or squashing it till she asked me to let go).  

User
Posted 04 Apr 2024 at 21:57

Originally Posted by: Online Community Member
Just commenting briefly on your biopsy experience. Reading posts on this forum was a great reassurance to me after my own very recent TP biopsy. (I’ve posted about my own ongoing experience in a separate thread.) The agony I felt during the half hour or so it lasted was why I chose my nick. I’m not sure why the medical folk aren’t more accurate about just how painful the TR biopsy procedure can be, nor why phrases like “noticing a little blood in your urine” etc are used when the reality for me and others has been more like a scene from a horror movie.

Hi, King of Pain 

You and Richard99, both obviously found your biopies a very painful experience. I've had two and didn't find either of them a problem. There have been numerous conversations regarding biopsies on here and I think it would be fair to say that the majority of people didn't find pain a great issue.

As Richard said it might be down to everyone having different pain thresholds.

I just wanted to balance out the experiences of the procedure on this conversation, in case it's read by others who are awaiting biopsies.

 

Edited by member 04 Apr 2024 at 22:07  | Reason: Typo

 
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