My PSA seems to be definitely on the move, latest is 0.11 up from 0.085 taken 3 months ago, full history is in my profile. I am sure SRT is now on the cards. There seems to be much to consider about dose (64-70Gy), target area (prostate bed with or without lymph nodes) and short term ADT, which is summarised in this recent paper I saw on here thelancet.com/journals/lanc...
Any thoughts would be welcome, I already have some adverse irritation in lower urethra so am adverse to more side effects, but needto balance with best outcome. I would probably want to therefore have a lower dose (64-66Gy?) to the prostate bed, plus something to lymph nodes and possibly short term ADT.
I am in UK so would need to get what I can from NHS treatment wise, and have a phone appointment (probably with the PCa nurse) in a couple of days.
Also there is the PSMA scan, which I think I may be able to get from NHS, is there any sense delaying until something shows?
I am happy to seek a private consultation to get a second opinion on treatment, if anyone has a recommendation?
Many thanks for any thoughts, I have found HealthUnlocked a very useful source of info - and best wishes to all.
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julianc
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The decision to expand the radiation field to include the pelvic lymph nodes should be based on PSA. If your PSA<0.35 there is no need to expand the field. However, 4 months of ADT are needed.:
Do not wait for metastases to show up on a PSMA PET/CT. That is a dangerous thing to do. By the time they show up, there are probably many more that are too small to see.
Thank you so much for replying. The SSPORT trial findings seem very timely for me. I spoke to an oncologist about 12 months ago, he was suggesting I would have no need for short term ADT at low levels of PSA. With this trial the ADT seems beneficial when considering endpoints in that it can keep you from needing lifelong ADT later on. Avoiding wider area RT in terms of toxicity vs outcome for PSA <0.35 seems to be a key relevant finding too. I hope the NHS has the flexibility to listen to suggested treatment. I will try and find an external specialist to discuss treatment plan with, I suspect the NHS oncologist I spoke to covers a wide range of conditions.
All but your latest PSA counts are to the 3rd decimal place. This leads me to suspect that the latest, to the 2nd decimal place, originates from a different lab. If so, you should retest. Your past time series reveales a quite long doubling time. This, in conjunction with your continence history, would made me very sceptical regarding sRT at this point in time. Lastly, a PSMA scan before deciding on the next step is mandatory IMO.
Many thanks for replying. I had assumed they dropped the dp once over 0.1 but I will try and find out if the lab is different. I hope I can get that info from the NHS. Regardless, I will push for a another test in a month or sooner if they recommend it. I have been fortunate to be on 3 monthly tests so have been alerted early.Yes I would try and get a PSMA. I know they do MRI as standard which seems of little use at low PSA levels, and a PSMA scan may just see something, although I believe unlikely if PSA<0.2. The oncologist I spoke to a year ago said he may be able to send me to London if I wanted a PSMA scan, so it didnt seem out of the wuestion then. I gather there are different options they can use (Ga vs F) and it sounds important to understand which would be best suited.
Current trend is to schedule sRT when PSA breaches 0.1. There are some ROs though that adhere to the older cutoff of 0.2. Some are just old school, but there are also few that are aware of the "bumpy" 0.15 region and would like to get clear of this. I am posting my PSA chart so you can visualize the volatility between 0.1 and 0.2. According to a research urologist I consulted, I am not an isolated case. At 0.17 it was evident that I was recurrent so started my Bicalutamide maneuvers documented here:
Many thanks, your Bicalutamide maneuvers are very interesting. What do you think your long term plan could be if you are adverse to SRT ... are you considering perhaps an estrogel approach? I have read of ronron's account of this, which seems better than a standard ADT approach, but I need to find out more about any trials underway. I think the PATCH trial is more focused on cardiovascular outcomes, rather than looking at something like Lupron vs Estrogen, but I need to beef up my knowledge on the ADT side of things.I assume you are somewhere you can get monthly tests easily? Not sure how I could sort that in UK.
I am not in principal against sRT. Definitely _blind_ sRT is out of the question. My plan is to see how far I can go with the adjustable Bicalutamide dosage and then have a PSMA scan before deciding on following steps. I mainly use two labs for the monthly PSA tests, in an alternating fashion, plus a third one as an ambiguity resolver in case of more than 20% count discrepancy. Quarterly PSA tests are provided by the healthcare system, the remaining are out of pocket, they don't cost much though, ie 14 to 16 Euros depending on lab. My personal idea/strategy is to keep the number of active cancerous cells within _measurable_ limits. If for each cell that is killed or put into hibernation another is allowed to divide, then the sum stays constant. IMO it is a bad idea to seek extinction of all hormone sensitive cells as this facilitates the proliferation of the hormone resistant ones. But, people like bragging regarding undetectability. Not I!
I would retest PSA. If confirmed I think you should discuss your risk rating with an oncologist as to whether to expand radiotherapy to include the lymph nodes or not and discuss the pros and cons. You had an RP 6 months before me. I too had reoccurrence. I had SRT in U.K. to prostate bed and 6 months worth of Lupron but this was a blind punt that works for 70% of people but not for me. In retrospect, had my physiology been different, I would have been better off going for whole pelvic lymph node radiation. My physiology means that they were loath to do this because of the risk of damage to my bowel was high. But had I been suitable I would have gone for whole pelvic lymph node radiotherapy and took the risk of greater side effects for a chance of a cure because, like you I was relatively young. However this is a very personal decision and imho should be taken in consultation with an experienced oncologist and, if necessary following a second opinion. Although they don’t like it you can push for a second opinion on the NHS . Good luck with your difficult decision. Your PSA took longer to rise than mine so I hope it is just in your prostate bed. I still have subsequent lymph node involvement.
Thanks for your thoughts, I read your bio and was interested to see that you were able to have targeted cyberknife after SRT, which could mean I could go back if I just had a treatment to the prostate bed and subsequently needed more. Was cyberknife in the uk on nhs? Also interested in your ADT treatment. I still think I have a lot to learn about the various ADT options
CyberKnife was on NHS but it is very much a fall back non curative option for me which might buy me some more time before going on systematic treatment because it won’t deal with micro metastases. It’s just that I was not suitable for whole pelvic lymph node radiotherapy. Speak to an oncologist but I think the problem with going back post prostate bed radiation to do whole lymph node is they cannot do a perfect match and may need to leave a small strip unradiated. My two bouts of ADT were firstly 6 months Lupron which was effective but I hated it will have more in the future and 6 months bicalutamide when doing CyberKnife. I chose the latter on pure basis of mixing it up and trying not to let resistance develop. Not scientific
I am in the UK and after having had a RP and PSA readings after my surgery being really negligible, I was frustrated and worried when after a year my PSA started to rise again. It was a slow increase and at 2 years had further biopsies taken of prostatic bed but were clear. However after 3 years it reached 1.11 and my surgeon recommended salvage radiation, I refused to have hormones and asked if I could just go straight to the radiation treatment, after a DRE he agreed.
I had 34 days of radiation treatment and had no issues with my bladder but did have severe proctitis from halfway through the treatment till the end. The proctitis cleared after about 2 weeks of the treatment ending.
The treatment knocked the PSA down again and it reached a nadir of 0.17 after 2 years and has stayed fairly steady since but has been increasing slowly and I will have to bite the ADT bullet soon.
I had a PMSA scan on the NHS last year but it was clear, so have delayed ADT but I am due a check-up this month so maybe that BIG decision will have to be made.
Ask as many questions as you can, make notes too and the one thing I have learned with the NHS is not to be afraid to say why? It was something I learned when I asked "why do I need hormones?" before the radiation. The Oncologist went away and brought another guy in who did the DRE and he said "OK no hormones needed".
Many thanks for your reply and sharing. Was your SRT over a wider area to cover lymph nodes also, which may have caused the proctitis? It sounds unpleasant but good that it did clear up.
No it was just my prostatic bed. My surgeon had taken out my pelvic lymph nodes prior to my RP to make sure they were clear before proceeding to the RP. The first time the radiologists knew I was having problems they insisted I saw the Doctor at the hospital, and when I asked him why I was so sore, he said that my rectum was filling the space where my prostate gland had been hence it was now also getting a radiation dose. I expect laying on my back to be zapped did not help and I understand that you can now have a spacer to reduce the impact on the rectum, worth asking about. It was not a fun time, I was well looked after by the girls doing the radiology work. The doctor gave me some anaesthetic gel to insert into my rectum prior to evacuation which helped with the pain. It did clear quite quickly once the radiation was over. I had an endoscopy last year and there is a small area in my lower rectum of increased vascularity as a result but it is not presenting any problems. All the best - Brian.
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