I hope this story might be useful to others. I'm based in the UK and had a PSA of 12.7 from a test in June 2023. That led to an MRI in August with a PI-RADS of 5 with irregularity on the front of the prostate. I eventually had a biopsy at the end of September after 3 cancellations (this was through the NHS). I finally received the results 5 weeks later - Gleason 9 (4+5) and was told by the consultant (or at least was given a book with the title "Understanding locally advanced prostate cancer" plus a card for the specialist nurse) in a 10 min consultation. This was a huge shock. I had an ordinary CT scan and NM bone scan. I saw another consultant privately and he was able to give me the results which were that there was actually no spread identified, which was cause for celebration.
I then needed to make a decision on radical prostatectomy or radical radiotherapy. Officially, both were treated equally. My initial thoughts had been on RP rather than RT. However, after investigating the options in more detail, I decided on the radiotherapy. My reasons are:
- fewer side effects with RT such as urinary incontinence.
- the treatment could start straight away back in November whereas the surgery would not happen until early Jan (i.e. around now) at the earliest. Even then with the 6 day junior doctors' strike and critical incidents declared, it would almost certainly have been postponed due to lack of beds, and that includes going privately. That would have been a time of great uncertainty and anxiety. With prostate capsule irregularity and high risk cancer, time was of the essence before mets appeared.
- I was concerned that the urologist was very gung-ho about spread. He said that as no spread had showed up on the ordinary CT scan and bone scan so there was no need to do anything about the lymph nodes.
- I went to a lunch and sat between two guys who it turned out had both had PC but were 3 years ahead of me. We spent the whole lunch discussing PC! Both had had RT. One without a spacer on the NHS and one with a spacer privately. The former developed further problems and now has a colonoscopy bag. The latter is clear. I could relate to his experience.
- I had been referred to a very nice oncologist for a discussion, We spent an hour discussing the various options and what the RT would involve. This gave me great confidence in her professional ability.
Consequently I decided on RT. The oncologist arranged a PSMA PET CT scan (hurrah!) in days and I then started on bicalutamide within an hour of the scan. The relief was immense! Two weeks later I had my first 3 monthly prostap (leuprorelin acetate) injection. That will carry on for up to 3 years. The radiotherapy starts at the beginning of March for 7 weeks. I will have the spacer fitted in February. My PET scan has shown no spread, but the oncologist says there is still the risk of microscopic spread to the lymph nodes and has calculated that there is a MKSCC risk of lymph node involvement of 69%, risk of SV invasion 71% and Roach risk of nodal involvement 28.5%. The PC is T2c/T3aN0M0.
Fortunately there is an excellent new private cancer centre 5 minutes away with the latest RT equipment where I will be treated. Otherwise the NHS hospital was 30 mins away on a good day, 90 mins on a bad day with poor parking.
Subsequently, a friend of a friend, who had seen the same urologist and had a prostatectomy 3 years ago and been given the all clear, had a sudden rise in his PSA and has been found to have spread to his ilium (hip bone), which was shattering for him.
So far, the side effects of the hormone treatment have been fairly mild, long may it continue 🤞.
I hope this is of use to others. Anyone with a specific query in the south of England can PM me. This is a great site.
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I suggest you rethink the spacer in spite of your lunch-mate anecdote. With GS 4+5 and stage T3a, there is a danger that the spacer will trap cancer cells against the rectum and prevent them from being killed. This happened to a friend of mine. An inoperable tumor grew into his rectum and was his main source of pain until his death. In spite of your lunch-mates, spacers only prevent late-term rectal injury, which is rare. I call it "a cure in search of a disease."
I know Alison Tree does excellent work, and uses an MRI-guided Elekta Unity. IDK how far you would have to travel, but she could complete treatment in about 5 weeks. MRI-guidance and gating of organs at risk can do a lot to prevent toxicity when wide areas are treated.
This article discusses some other considerations for you:
Thanks, TA. The oncologist had considered the issue of the spacer. Cancer is restricted to the anterior portion of the prostate. Hence the rear of the prostate which abuts the rectum is clear. Alison Tree works from the Royal Marsden which is about 2.5 hours away, so not really practical.
They will be treating the entire prostate of course. Was there any PSMA PET uptake in any area other than the anterior? and remember, PSMA PET does have limitations...growths < approx 5 mm will not be picked up. assume they will do whole pelvic RT?
Yes they'll treat the whole prostate. The PSMA PET uptake was only in the prostate in the area identified by the MRI scan. But I assume they'll do the whole area that could be at risk.
Hi TA, I asked my RO about the issue you raised concerning the use of SpaceOAR and he said that they do not use that in Australia anymore but now use another type of Barrier Gel (not sure what the brand name is) but he said with this new Gel, the issue you raised is now extremely minimal compared to the benefit gained. My mate couldn't have any Gel due to issues with anaesthetic and now is facing rectal issues.
In spite of your mate, late-term rectal problems are rare and it doesn't help with acute problems. Barrigel is better than traditional SpaceOAR, but is still a solution in search of a problem.
I chose total laparoscopic prostatectomy because I wanted to be rid of the prostate altogether. My only suggestion is that you be ware of unqualified people on this site dispensing medical advice without a license. I'm not talking about people who give their general advice based on their own experience and/or research. Just the know-it-alls.
Hi Mark, your journey almost mirrors mine. Like you, the panic sets in when you are told you have an aggressive PCa and that news is usually given by the Urologist.
Mine told me to get the PC out but he also did say to evaluate both types of treatment first and so after going to a RO, - like you I adopted the radiation / adt pathway.
I did note that the Urologist did say that during Covid many PC treatments were cancelled, some ended up being delayed for up to 18 months and the data showed that over that time many (including those with 8+ gleason scores) had very little change in their diagnosis. I just had another MRI 6 months after original and nothing had changed at all.
Anyway, I've elected to do a few months ADT first (starting in 2 weeks) before RT and I'm also getting Brachy Boost treatment after RT. The RT / BBT will be happening in July after I get the Barrier Gel. Hopefully by then my PCa will well and truly be in a sleep mode.
I am interested in how you are coping with Bicalutamide ( i assume 50mg) and I'll be keen to see how you cope with the ADT as well. You are a few weeks ahead of me with this and I'm hoping to cope with my HT while travelling overseas.
Anyway, all the best to you and thanks for your comprehensive story.
Thank for your comments. I haven't seen any data on the effect of Covid on rates. I am a little surprised. At some point mets must start travelling around. I do wonder whether the NHS is being a bit selective with its data as it was us protecting the NHS rather than the other way round, which is a bit scandalous in my view! The effect is shown in the level of excess deaths in the UK which was and still is higher than it should be. I know my nephew's wife was a victim. She had bowel cancer that was in remission and was supposed to have had additional scans and chemo which did not happen. Sadly she died just over a year ago.
Spacers have little effect on short term side effects but a lot more on long term effects. For instance, rectal toxicity after 3 years was 2% in the spacer group and 9% in the non-spacer group. Most of the non-spacer group who had side effects had "grade 2". That is defined as intermittent loss of sphincter control with 4-8 poos a day. None in the spacer group had grade 2 toxicity. That seems pretty significant to me!
I was only on bicalutamide for 1 month and it didn't have a noticeable effect. The ADT is having some slight effect. I have lost a lot of libido, but at 72 that is of less concern! I am a bit more grumpy, as my wife would say. The exercise classes I go to seem slightly more hard work, though I have managed to increase the dumbells I use from 3 to 4 kg. Following advice from my massage therpist, I have been working more on my back muscle (deltoids?) and the muscles at the back of my thigh, increasing weight from 35 to 40 in both cases. But if I didn't know I was on ADT, I would just put it down to age!
I think you should be able to sail through your overseas trip.
Thanks, Mark, for your excellent reference by NICE. I think it's extremely important, and everyone should read it who's thinking of RT. Some of it's summary results are listed below:
Chao (2020)
Early Grade 1 GI toxicity was 13% with a spacer and 31% without a spacer.
Early Grade 2 GI toxicity was 0% with a spacer and 2% without a spacer (not statistically significant)
Late Grade 1 GI toxicity was 0% with a spacer and 8% without a spacer.
Late Grade 2 GI toxicity was 0% with a spacer and 2% without a spacer (not statistically significant)
Miller (2020)
Late Grade 1 GI toxicity was 21% with a spacer and 30% without a spacer.
Late Grade 2 GI toxicity was 2% with a spacer and 6% without a spacer.
Mariados (2015) & Hamstra (2017)
Late Grade 2 GI toxicity was 2% with a spacer and 9% without a spacer.
Late Grade 3 GI toxicity was 0% with a spacer and 6% without a spacer.
Late Grade 2 GU toxicity was 4% with a spacer and 15% without a spacer.
Thanks Mark for your great reply. You have given me some confidence that ADT hopefully wont have an impact our holiday. It's good to see that you are managing quite well on the medication so far. I mentioned about your comment of getting a little more grumpy to my wife and her eyebrows instantly rose until they had no where else to go. Ha!
The PCa treatments today have really come along way in the past 5 -10 years, particularly in the area of Ray Treatment and they keep evolving in a positive way, which is good. On the other hand RP hasnt really improved since robotic surgery and so I sort of get this impression that Urologists feel like their method of treating PCa is declining in favour of RT. I'm not suggesting that getting RP is a bad choice, as there are a lot on this forum who have had good outcomes with it, but if there is an alternative now that has less risks and potential SE's and that demonstrates equally as good outcomes, then I can understand the Urologists concerns that there method of treatment is waning somewhat.
Just out of interest was your Bicalutamide 50mg tabs?
Many thanks for your reply. I liked that comment about the eyebrows, with my wife it's just the one eyebrow that goes up! I agree, the advances seem to be with RT rather than RP. To me, RT is the scientific method. With advances in hormone therapy and even more RT accuracy coming along, the days of RP do seem to be numbered. The cancer treatments coming along are likely to be more chemo / HT based. Hopefully, in the next few years it will be possible to pick up cancer markers in blood tests so it can be treated at a very early stage.
Yes I was on 50mg Bicalutamide tabs. Let us know how you get on.
Dear MarkExcellent news that it's all going to plan with the Radiation and hormone treatment. I am sure that you will have an excellent result.
When I was at the Royal Marsden I asked about a gel spacer and the response was that they no longer recommended the use of a spacer, since they seem to have such confidence in the accuracy of their machines?
Just back from Morzine after a couple of weeks skiing. All good. It is two months since my operation and yesterday went to the hospital for a PSA test. I am told that the GP will review the results on Tuesday and it will be available on the NHS app thereafter. The results are in why not just post them so I can see if it's below 0.1? It does not take any involvement from a GP who had nothing to do with it. So frustrating.
No real incontinence issues apart from some stress incontinence eg sneeze or exert myself by lifting something too heavy. It is said that as time passes then stress incontinence will decrease. Sleep all through the night and the bladder copes with the volume fine. Still doing pelvic floor exercises.
Seems as if I have been lucky on the continence and "potency" fronts. Let's hope that I am also lucky on this next PSA test result and its not the case of 2 out of three ain't bad.
I wish you all the best for your curative treatment going forward.
Dear WYWH, Thanks very much for your best wishes. I'm really glad your RALP is working out so well. I would have gone for that as well if my cancer had not been high risk and with little or no risk of spread to the lymph nodes, etc. So far the side effects seem limited (lack of libido and feeling slightly tired). I have my planning appointment on 27th Feb with RT starting on 6th March which continues for 7 and a bit weeks. Fortunately most of the sessions start at 1045 so I can get a gym class in beforehand. The RT place is literally 2 mins from my gym! I hope to be able to continue with the exercise throughout treatment, which I hope is realistic. Presumably there is a balance to be achieved between sufficient exercise and not getting exhausted - I don't always get that right! I hope your PSA is nice & low!
Seems like a well thought out plan Mark. My husband had a RP in 2019, but came back with positive margins after surgery, so he wound up needing RT anyway a year later. He had 35 sessions of VMAT for a total of 70 Gy. One comment to you. He had his treatment at a top cancer hospital and they did an ultrasound bladder scan before every treatment to make sure his bladder was at the optimal level for RT. He has had no real side effects from radiation other than fatigue. His brother also had PC and lives elsewhere, and no scan was done on his bladder prior to RT. Brother has many RT complications. No this isn't scientific whatsoever, but I do think choosing a facility that has excellent operating procedures can make or break your outcome. All the best.
Thanks, Fluffyfur (Golden Retriever? - beautiful dogs), the hospital is private and top knotch. They do some sort of a scan before each session and I have strict instructions on emptying the bladder and drinking 750ml of water 45 mins before. Did your husband have to have a special diet for the sessions? They say, eat a healthy diet, which I do but that does mean a lot of fibre. I have a consultation and planning session coming up in Feb but it would be good to know what others did. Cheers, Mark
Dear Mark SJust a quick update. PSA result back. Less than 0,025. Hence it looks like it's below the lowest detection threshold of the testing machine.
Very happy with that figure.
I also had the histology back from the removed prostate. My 2 MRI scans and one biopsy ( 18 cores) reported that I had one tumour in the prostate. The histology revealed that I actually had 2 tumours present in different locations. Just makes me think that having the prostate removed was a lucky move since if I was to have had radiation then they would have zapped the single identified tumour and we would have been casting around after treatment asking why my PSA level was 5. I am sure that further rounds of MRI would have found the "rogue" tumour and then radiation would have dealt with it.
As always best of luck with your treatment. Stay healthy, eat well, sleep well, exercise well but don't overdo it since your body will be "stressed "with the treatment and it needs to recover.
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