It was spring of 2011 and I was 49. I have always kept physically fit and over the previous couple of years had joined the triathlon scene (probably mid life crisis). On returning from a long hard cycle ride one day I experienced some pains which I thought might be appendix related, but on finally consulting with my doctor and ultimately the hospital I was diagnosed with kidney stones. The stones ran their course, but during those visits to the urologist, I asked whether it would be a good idea to have a PSA test, as my father had suffered from prostate cancer and I understood that statistically I was twice as likely to do so too.
I had my first PSA test on the first of June. The result came back at 3.58, which for my age was considered a little high though not in any way conclusive. A subsequent DRE detected no abnormality. The urologist favoured a TRUS biopsy to try and confirm or otherwise the presence of any cancerous cells. I however wanted to have a couple more PSA's first, as the idea of the biopsy didn't really appeal and in fairness the urologist said that the kidney stones may have been a contributory factor in the elevated results. The spacing of the next two PSA's were not ideal - they should have been further apart, but at least they gave perhaps a better indication than the single isolated test. Test 2 was on 14th July (3.17) and test 3 on 19th August (3.41).
The conclusion was that the readings were a little high and a biopsy would be the best option. A TRUS biopsy carried out on the 5th Oct indicated 2 positive cores from a total of 10 taken. The two positive cores were the right midzone and the right base. Both had a Gleason pattern of 3 with less than 5% (3+3=6). There was a potentially suspicios foci at the right mid apex, but nothing confirmed. I was told therefore that this was low volume, low risk cancer.
I don't think anyone will ever forget the day they get told the bad news. My wife Sue and I left the consultation and went for a walk along the coast, we had a drink in a little pub and talked things through. She has been a great companion and friend throughout these stressful times, as too have my daughters. I'm conscious that I need to make the right decision, not only for me and my quality of life but for my family too.
Eventually we attended further consultations with urologists and oncologists and of course spent hours on the internet finding excellent sites like this one. Generally the feeling from the oncologist was that I could decide on whatever treatment felt right for me, but his advice was that due to my relatively young age, he would either choose AS or RP. That rather surprised me, as I had expected an oncologist to recommend a radiation treatment. His rationale was basically that at my age, it would not be unusual to see a recurrence of the disease far too early and so better to either treat it radically or go AS. My father successfully had radiotherapy and is still around at 78, but he was in his mid sixties when he first was diagnosed (after spotting blood in his urine). I'm 15 years younger, with no symptoms.
I decided that for the time being, for all of the usual quality of life reasons I was happiest to go the AS route, but to remain proactive with regular checks. If you choose that option, the last thing you need is to get complacent and get a big surprise - when it could then be too late.
So all options remained on the table. A confirmatory MRI told me that nothing appeared to have escaped the capsule, so we were good for the Active Surveillance option.
I then continued with a regime of PSA tests every 3 months and biopsies every 12 months;
12th March 2012 - 2.97
8th June 2012 - 3.51
26th Sept 2012 - 3.66
The PSA's bounced around a little and I was aware that depending on the level of physical training I was doing, especially cycling, it was likely to have some effect on those results.
On the 1st of October 2012 I had by second TRUS biopsy. I really do NOT like having that done. This one hurt a little more than the last procedure and although I was admistered the usual doses of antibiotics before during and afterwards, I very quickly developed an infection. I attended hospital the next morning with severe flu symptoms and a high temperature. I was quickly put on an IV antibiotic drip for the next couple of hours and sent home with stronger antibiotics which did the trick. I was pretty sure that I wanted any OTHER alternative to a TRUS biopsy next time around.
The results from that biopsy again had 2 positive cores of a total of 12 taken. The right central medial Gleason 3 (2%) and a more worrying Right Apex Gleason 3, but 40%. The urologist told me not to worry about the fact that it was 40%, it was still a 3+3 pattern.
On the 28th January 2013 I had a further PSA test and this one came back as 3.99 - my highest yet. I discussed this with my urologist and although this is not a huge score, I was begining the feel that if it was to rise much higher, I might like to take some more positive action. I think that most of us who go the AS route have it in the back of our minds that "what if it escapes the capsule and I could have potentially eradicated it altogether". We agreed that if it climbed higher than 4 we would seriously begin to discuss other options.
In between PSA tests I'm able to put thoughts of the PCA completely out of my mind and I actually forget it's there. I get very busy with my triathlon training and had decided to enter and begin training for my first Ironman. However, my next PSA on 13th May 2013 came back as 4.85. a rise of 22% in just over 3 months. This was classed as significant. An MRI was scheduled.
I had the MRI on 4th June, 2013. Meanwhile, because I new my increase in cycling may have contributed somewhat, I had a further blood sample for PSA taken too. The PSA came back as 4. The MRI report by the initial 'Principal interpreter' had me worried. It talked of "intermediate probability small focus higher grade tumour right apex, with probable capsular breach, but biopsies to right apex advised". My urologist reassured me that subsequent to this initial interpretation, a case conference is held with a number of experts and the conclusion was that there was no such capsular breach and that this was still low grade low volume cancer. He recommended that I could undergo a more accurate 'template biopsy', performed under a general anaesthetic. Basically a grid is used and the procedure is done externally via the perineum. Many more cores are taken and there is much less likelihood of any positive areas being missed.
I had established fairly early on that my urologist has conducted over 300 RP's and that his potency / continence and reocurrence stats are good. However, he uses an open technique and I was keen to look into robotic techniques too. I have successfully been referred to a urologist in London who is well established in RP's using robotics and my appointment with him is on the 27th August. I aim to establish his post operative stats, as I am aware that it is the expertise of the surgeon rather than purely the means which has the greater effect on success rates with the RP option.
I have still not completely discounted the other available radiation / HIFU options should I decide to take a more proactive route, but the thought of the complete eradication of the cancer (with side effects minimised as far as possible) giving the best chance of longevity, is pretty attractive to me. So thats where I am at the moment, considering the template biopsy and / or potential intervention, though we still have time to think it through. I'll keep this diary updated.
Had that trip to London today to consult with a top urologist at Guys Hospital. He spent some time looking over my previous history, MRI's and biopsy results and it was very useful to have a second opinion on my current status and viable options, particularly someone with such a good reputation.
He agreed that if I planned on continuing on the AS route, a template biopsy would be advised. He pointed out that TRUS biopsies do not sample the anterior region of the prostate and so he would always advise this is done to get the most accurate indications that there are safe margins with which to continue with AS. He seemed slightly surprised that I had not already had a template biopsy, given the PSA was hovering around the 4ng/ml mark, which he considers to be high. The MRI assists in indicating things are relatively safe in that anterior region, but he says it's always best to be backed up by an accurate biopsy.
One thing I was keen to get his opinion on was the potential damage being done (certainly in my mind) by repeated biopsies and the consequences of spreading cancer infected blood around to other parts of the body. He agreed with all other statistical findings (as mentioned several times within this site) regarding any spread of cancer through a biopsy procedure - ie there is no evidence whatever to suggest that is the case. However, he did express the view that repeated needle biopsies were regularly piercing the nerves and he could quote a number of patients who had experienced erectile dysfunction to varying degrees as a result. This is not something that had been pointed out to me in the past. [This has been reported anecdotally but I have not found a suitable study to reference.]
As mentioned earlier, the reason for choosing to speak with this particular urologist is because he is notable for his use of robotic RP techniques and I was keen to get his view on this. He feels that the increased magnification and resolution of the optics makes the procedure much more precise than conventional methods once a surgeon becomes fully proficient. Also there are the obvious benefits of closed laparoscopic surgery in terms of scarring, infection and recovery times. He conducts 150 procedures per year and has carried out a total of 900 RP's. His stats on potency, continence and recurrence are very good and of course the younger one is, the better ones expected recovery time and recovery levels.
I asked him what his advice would be - would he have a RP now if he were me. He was refreshingly pragmatic;
"A good question and quite a difficult one. There is a lot of information out there and statistical analysis that would indicate an over identification and subsequently an over treatment of this disease. Let's be clear, in my opinion you are not going to die from prostate cancer any time soon. As discussed, the template biopsy would increase our reassurance levels that the current 3+3 Gleason assessment was correct. A PSA of 4 and over at your age in my view is too high and I'd be keen to ensure that I knew as much about the volume and grade of your cancer as possible, to be sure that we do Active Surveillance properly. The problem is, the process of repeated biopsies and MRI's need to then continue ad infinitum, so that you can identify any significant changes that occur in future, early enough to act on them. You are borderline, in that if you were 3+4 at your age, I would say have a RP. However if a template biopsy suggested no change to your current diagnosis, you could continue AS for some time. I feel that the key issue for you in considering the RP option is the prospect of ED. I am confident that post RP you would not have any lasting continence issues and the prospect of any recurrence of the cancer is minimal. At your age and fitness, with good pre-operative erectile function and orgasm, I would expect you to regain good post operative erectile function. I would probably go for the RP and have it done, but you have a choice and there is no time pressure at the moment".
He stressed that there was no urgency to make a decision on treatment options. Having just had shoulder surgery, he said I should wait for that to settle down anyway. He advised that if I choose the RP route, to pick a suitable time in the future and perhaps have a holiday first, as the recovery period (back to work etc) he advises is usually around 6 weeks. He is sending a copy if his report to both my local urologist and to me.
Tomorrow I'll have my 3 monthly blood test for a PSA and will report back on that result and any decision I subsequently make on treatment options (I used to be indecisive - now I'm not so sure!).
Just a quick (late) update. I had the PSA test in August and it came back at 4.47 so it tends to be steadily rising. Should have had another PSA by November really, but I have pretty much decided to go the surgery route.
I realise that the surgeon from Guys Hospital who I consulted in August, (Declan Cahill) operated on another YANA mentor Ian Sharpley back in 2004. He performed that operation laparoscopically and Ian highly recommends him. I have emailed Ian for a few specifics and he was very helpful.
I've contacted Guys to indicate that I have decided to go ahead with the surgery option and now await a further appointment to see Mr Cahill.
Well, although I'm without symptoms my PSA has steadily been rising and in January 2014 it came back at 6.5ug/L.
For the reasons mentioned earlier, I made the firm decision that I would be going for the Robotic Laparoscopic prostatectomy. I had various pre-assessment blood tests etc. including another PSA in February, which confirmed that it is now 6.52ug/L.
I'm booked in for surgery by Declan Cahill on April 10th at Guys Hospital. Here goes - I'll report back post op.........
Just a quick update, in that I was pushed back from my original operation date due to a more urgent case presenting at Guys hospital, so my new date is now tomorrow 24th April, 2014.
Ill keep you updated.
Had the operation on Thursday and was back home recovering on the Saturday. I was Mr Cahill's 1002 robotic prostatectomy patient at Guys Hospital.
All pre-op briefings were accurate in respect of the effects of the operation, such as any pain and trapped gases throughout the body (even up in the shoulders, which was very uncomfortable). Thankfully the gases have now dissipated or have been passed and the pain is easily manageable.
I'm up and about, though feel a bit battered and bruised. I return to the hospital this Thursday to have the stomach staples and catheter removed. I'll provide updates in due course.
Post op update;
I went ahead and had robotic laparoscopic surgery as planned. On regaining consciousness, I was given the good news that everything went without complication and that they were able to perform a bilateral nerve sparing procedure.
As the pre surgery consultations had suggested, there were various things to experience in both the immediate aftermath and over the next few weeks. I spent a total of 2 nights in hospital.
In the first few days following surgery I experienced a build up of gases, which needed to run their course before finally being expelled. This was pretty uncomfortable, but soon settled down. Stomach staples were removed painlessly from the six small entry sites after about 7 days. I had to follow a 28 day course of self injected blood thinning medication (Fragmin), which is initially disturbing if you're not used to it, but quickly becomes routine (ish).
Probably the worst thing to adjust to was having the catheter in. Mine had to stay in for an extra week because I was unlucky enough to develop a bladder infection. However 12 days later after the operation, (towards the end of a course of antibiotics), after a cystogram, the catheter was removed.
I think it's on removal of the catheter that you feel the recovery process can truly begin. I did continue to occasionally bleed and pass blood clots for about three weeks after catheter removal, which was pretty disconcerting, but eventually it stops. Once the catheter is out you can really start to work on bladder control and continence. I was never really incontinent to a high degree, rather just a few drips after urinating, or a little stress incontinence. My urinary flow is now normal, bladder capacity has returned to near normal, continence is so far at about 95% and I expect it to be 100% within the next couple of weeks.
There is such a variance in the advice and guidance on the net regarding recovery periods and when one should return to work etc. Guys hospital, London advise that you take a full 6 week period to recover. Many return to desk jobs within 3-4 weeks. I was glad of the 6 weeks. The infection had knocked back my overall post op recovery time anyway and I did find myself getting tired pretty quickly, even though I would consider myself to be unusually physically fit for my age.
ED is a factor as expected. There are a number of similar drugs available for ED, as discussed by many colleagues within this site. I initially started to take a daily dose of Cialis at about 5 weeks post op, which did, to a degree, begin to have the desired effect. However, the side effects were too unpleasant for me to continue with that drug (severe lower back pain / sciatica).
Reactions to these medications vary widely from person to person and luckily each drug is slightly different. I'm now using Sildenafil Teva 50mg (Viagra) with no side effects and as it happens, a stronger penile reaction. I may also compliment this 'penile rehabilitation' with other methods to increase blood flow and speed recovery etc. There's still a way to go in this respect and the advice as we know is to expect normal erectile function to take up to 12 months, sometimes more before it returns to near pre op levels, but because of the encouraging signs relatively early on in my case, I fully expect a return to normal function within a couple of months.
I'm now a day short of 8 weeks post op. Today I returned to see my consultant for the results of both last week's blood test and the histology of the removed prostate. My PSA is undetectable and the prostate margins were clear - the cancer was contained. What a relief :)
Interestingly, although my previous biopsies and conversations with urologists suggested that I would still be considered low level 3+3 and could have remained on AS for some time, it turned out that the volume and pattern of cancer had been more advanced than we had suspected. There were two cancers present, one 3+4 and one 4+4. The consultant agreed that I had made the right decision at just about the right time. I return for a further confirmatory blood test in three months.
Today has been an emotional one for my family (especially my wife) and I. It seems an age since we were told the bad news nearly 3 years ago, but now I feel that a weight has finally been lifted and that we can move on together, really appreciating the good things in life.
I would just like to thank YANA and fellow contributors for being there when I needed the comfort and support of those fellow sufferers who were willing to share their experiences. I'll periodically update on my situation and will be happy to be there as a mentor offering any support I can.
It's been a while since my last update, I apologise.
It has now been 2 years since my surgery. I've basically remained undetectable on the PSA front, no issues with continence and have regained most of my function (I still sometimes use Viagra or an injection if I want an extra boost, but I am able to fully engage in sexual intercourse without either).
Life is back to normal and is good. My final PSA test before being discharged is in a couple of months. I would thoroughly recommend the procedure for the ultimate piece of mind - depending of course on the expertise of the surgeon.
Jeff's e-mail address is: firstname.lastname@example.org