I had been experiencing peeing problems for a couple of years or more, plus dry ejaculations. My GP mentioned a PSA test in 2010, but apart from giving me leaflet, didn't really pursue it. He did give me a DRE but didnt find anything worth pursuing in his view. I have since written to him to say I felt let down, and that he should have been more directive, and he and I have since discussed this and agreed to differ! His judgement over the DRE was v.different to those of two urologists I subsequently saw.
I had a private 360 medical in December 2011 and a PSA test was included in this, the result was 27. The doctor noted my prostate felt firm but smooth. My GP then referred me to a consultant and I had a biopsy in early January which came back with : 10 out of 10 cores positive, Gleason 5+4 = 9, and staged at T3. MRI scan suggested some spread to seminal vesicle, while bone scan and CT chest scan were both clear. So staged at T3bN0M0).
At this point I begun to read and research - useful books such as Walsh and Worthington, and Strum and Pagliano. Plus good support from fora like yananow and the prostate cancer charity in the uk. My consultant proposed surgery followed by RT, or possibly HDRB. WHy? Because I was relatively young and otherwise reasonably healthy (great to hear!). I had a friend that had had a successful RARP. [RALP (Robotic Assisted Laparoscopic Surgery)] So I arranged two private consultations with leading surgeons: one in London at the Royal Marsden and one in Bristol. They both agreed that chances of cure with surgery were 20-30% in my case, but were willing to operate, if I was ready to go along with the usual side effects. I had been affected by ED problems for a couple of years so this wasn't an issue for me, but the incontinence would be a worry.
My consultant referred me to Bristol, and I then had the RARP in Bristol in March, and it went pretty well: prostate, SVs and lymph nodes all removed, non-nerve sparing. Good margins according to the surgeons. My catheter out after 2 weeks (thank goodness) and my recovery from the op is going well. The Bristol surgeon who is very experienced (over 600 ops by his Bristol team) put me on bicalutimide (casodex) for 4 weeks before the operation (150mg/day) in order to try to reduce the tumour and make it easier to remove. This he thought an innovation worth trying.
Post op: very minor incontinence, and have stopped wearing pads now after 4 weeks. So I count myself lucky. ED continues.
My follow up PSA test 5 weeks after the op was 0.38. That to me seems pretty good (though I may be proved over optimistic in the months ahead). I have an outpatient appointment tomorrow to discuss the results of the surgery and any need for follow up. Will update when I have had this.
Generally I feel in good health, and getting over the op well.
Since my first entry, I had a second PSA test 2 months after surgery, and this showed an increase from 0.38 to 0.75 in a month period. So this is a doubling but I am not sure if this is significant. It does indicate that the surgery, while drastically reducing my PSA level, has not removed all of the cancer. As planned, therefore, I am moving on to Radiotherapy in Aug-Sep. 6.5 weeks 32 doses. As part of a RADICALS trial, I have been allocated to have ADT (Prostap [aka Lupron, Eligard, Viadur]) for 2 years alongside the RT.
I started on cyproterone a month ago to reduce any flare. First injection of prostap was 2 weeks ago. This is a 3 monthly dose. So far I am very happy to report that I have no side effects from these drugs.
After my last post, when I was set to start IMRT + ADT as part of a RADICALs trial, and my PSA was 0.75, I can offer an update. After 1 month on Proscap and just starting IMRT course. My PSA has gratefully fallen to 0.14 mainly due to the hormone treatment I guess. I am happy to be on the part of the RADICALs trial that assigns me to 2yrs on ADT alongside the IMRT. This is because of the research evidence that I have seen that seems to IMRT+ADT has greater benefits than RT alone.
I have some concerns that the IMRT is guided by tattoos and regular CT scans, since I read that there are more sophisticated targeting methods e.g. in US with Calypso that adjust to your breathing. But the NHS team are doing a good job I think.
Since my last update, I have finished the 6 weeks of radiotherapy and am continuing with the adjuvant hormone treatment. My most recent PSA has gone right down to 0.01 which is great. As mentioned, I am taking part in a RADICAL trial which is comparing three hormone treatments alongside R/T. I am in the group randomly allocated to having hormone (Prostap) for 2 years, with 3 monthly injections. So far the only side effect seems to be hot flushes, which occur 2-4 times a days I guess, some mild others a bit more irritating.
Continuing on with three monthly Prostap (ADHT) injections, and my last PSA was 0.01 so that is great news. I count myself pretty lucky now and have gone back to work and travel, and am happy to put up with the occasional hot flushes. The main challenge is total ED (typical with my treatments), and the difficulty of using the vacuum pump, my preferred 'weapon' of choice. Still we will persevere (wife and I). Best wishes
Since my last update a year ago, there is no real change to report. My RADICAL trial continues with 3 monthly prostap injections. The last injection is due in April. I have enjoyed a return to normal working life, had a 60th birthday, spent a lot of time sailing...so I feel very fortunate - so far so good. I see the oncologist and also the urologist consultant for periodic check ups. Given my stable PSA over the past year, they are happy with my progress. When I come off the two year course of hormone treatment, they advise me that it will take up to a year for the hormone drug to leave my system. There may be a small rise in my PSA. But they will monitor me every three months and then reduce this to six months.
After a long series of low PSA; scores (. 03 or less), my latest test showed a rise to 0.29.
This is 6 months after finishing my 2 year hormone treatment course. It's disappointing news. But the advice I received is that this change may not be significant. The next PSA; test in 3 months will be a stronger indication of whether this rise is significant.
I feel it's the right time to add an update, after some months gap. After enjoying a year of undetectable PSA, and after stopping the hormone treatment in Feb 2014 (I had two years on the RADICALS trial in the UK, following RP and R/T), my PSA has started to rise. It was 0.29 in Sept and then 0.75 in Dec. So a fairly rapid doubling time. My oncologist agrees that this indicates treatment has not worked and I am now set to start back on hormones to manage the PSA from here on. Grim news moving from treatment with 'curatice intent' to now being incurable. I will have another PSA test in 3mths as well as other blood tests (renal, liver, bone, urea, FBC are all ticked on the form!) as well as bone and MRI scans. This is to have a full re-guaging of the disease in order to decide whether hormone treatment should start at that point.
All of these events seem strange in a way, because I actually feel pretty well. Having been off prostap for 11 months now, I guess this is partly related to a more normal hormonal balance. No pains in joints etc. and no urinary or other symptoms. (apart from ED of course).
I have been reading some useful recent research papers (published in 2013) that address the issue of biological recurrence (BR), and the key factors that determine whether to re-introduce ADT. I fall very much into the high risk category with my Gleason score, PA doubling time and time to BR. So not great news, but overall the direction of travel it is a surprise, and I will carry on managing things with the fantastic support of my family.
Well a year on, my progress is as expected - good news in that the scans I had in March 2015 proved clear, and so I am just continuing with PSA tests every 3 months and no treatment, but observation. The PSA scores have risen steadily from 1.27 in March to 2.23 in September and 2.97 in December. My consultant is happy to hold off on re-starting hormone treatment until a further rise occurs. I will have a another PSA test in early April 2016 and see him again after that. My health in general is very good, with no side effects apart from impotence. The various remedies for this have proved ineffective, and I haven't gone on to try the injections yet. I feel pretty fortunate to be off treatment for 2 years now but I am well aware that the PSA rise continues. Will update in April....Good luck to everyone!
Just an update, to follow my recent PSA test in early April that showed a rise to 4.2. I then saw my oncologist who rather to my surprise said that he was happy for me to remain off treatment for now and to revisit the situation in 6 months. I am happy to stay off treatment - return to prolonged hormone treatment isn't an inspiring next step. He believes that when I do this will knock back the PSA, but of course I would have to remain on treatment for the foreseeable future. So I can look forward to a relaxing summer, and have blood tests every 3 months as per usual.
Nick's e-mail address is: firstname.lastname@example.org