In September 2008 I went for a medical - PSA was around 4.3. I was sent to a specialist who repeated the PSA and did a DRE. The prostate felt normal and he suggested another PSA in 3 months time.
The second PSA was much the same as before and he suggested a biopsy which he did in his rooms. Three cores were taken from each side as I have a small prostate (~20g) The results came back as atypical but without a diagnosis for cancer.
A further biopsy four months later again showed no definite cancer although this time the pathology was "highly suspicious" in one of the cores.
A further PSA 3 months later was measured at 5.3 and I was advised to have a "saturation biopsy" under general anaesthetic. This turned out to be eight cores, of which two came back positive for cancer. After waiting for a year, I was not that shocked at the news. My wife Sandi has been with me throughout this journey and has been a great source of support.
(As an interesting aside, post the diagnosis I found a PSA test from Feb 2007 at 4.13 - that GP doctor kept going on about my high cholesterol, neglecting the high PSA - In those days the normal upper level was considered to be 4.0 - on my latest test it is 2.6)
Having been diagnosed my specialist advised me to get other opinions on treatment although he had not given me his advice. He had spent a lot of time going on about Active Surveillance, at the same time mentioning how young I was. This put me off AS, although effectively that is what I had been doing anyway.
My initial thoughts were towards brachytherapy, however the more I looked into it the more I was put off by the potential side effects. HIFU is available in Cape Town, but it is a new procedure here and someone has to pay off an awful amount of money for the machine. The fact that there are no long term studies on it's effectiveness put me off this route.
After consulting the university academic hospital Professor of Urology as well as another surgeon urologist I have decided to go the surgical route. Sandi and I liked the guy and he could answer all our questions in a factual and honest way. My advise would be to only go with someone you feel 100% comfortable with.
I am not aware of any laparoscopic prostate removals in Cape Town, and I am put off by the remoteness of the procedure anyway - I don't think that there are any Da Vinci robots here either.
Anyway my final choice of surgery may be of interest to some - my specialist only does perineal RP's. He started off doing retropubic, and after observing his first perineal op, vowed to never do another retro. The big advantage to him is the significantly lower blood loss (200ml vs 1200ml) which enables him to SEE what he is doing clearly. He says that you cannot easily see the nerves anyway, but claims to have good success in nerve sparing through clear cutting around the prostate. For those considering surgery, its important to talk to your surgeon about success rates and experience. He studied the perineal procedure under Lance Coetzee in Pretoria, and has done 170 perineal ops and about the same retropubic prior to that.
I am booked in to the Christian Barnard Memorial Hospital on the 3rd November. I have provisionally set myself two recovery goals:
1. Celebrate my birthday on the 21st November
2. Ride the Argus cycle tour (the largest timed event worldwide) It will be my 10th tour.
In the meantime I am working at improving my fitness levels and eating healthily, as I am convinced that these will improve my recovery rate.
I'll add some more after my surgery.
Had the RPP on Nov 3 - The surgery was about 3 hours and I came round early evening. I was kept in high care which was unpleasant with drip alarms going off all night and a lot of noise from the night staff. I had been given an epidural which was wearing off, leaving my legs full of pins and needles, making sleep difficult. I also bled more than usual (400ml), but the surgeon said all had gone very well - he had hit the plane well, easily removed the prostate and was pleased with the bladder reconnection.
The following morning I was moved to a private room with amazing views of the city, mountain and sea. It made a huge difference to my well being and if you have the opportunity to have your own room it is worth paying for.
I was discharged on Friday 6th November and am now recovering at home. The pathology shows PCa in both lobes, no extra capsular or positive margins. Gleason upgraded to 3+4.
I battle to sit for long at the moment but can climb up and down stairs fairly easily. Like many others, the catheter is the biggest issue at the moment. I have had intermittent bleeds/clots and some bladder spasms - which is a feeling of a full bladder with an urge but inability to urinate. I am now on antispasmodics, as well as 6 hourly pain meds, 2 daily antibiotics and 1/day Movicol, a PEG stool softener. Some practical things to help that I have used are:
- sections of ladies stockings to anchor catheter bag works well
- I remove the bag completely when showering
- Baby wet wipes for cleaning wound/backside
- separate big bag for nighttimes
The catheter remains in for 14 days from op. My urologist is very against earlier removal as the bladder neck must heal correctly and is the key to continence recovery. I am happy to live with it for now therefore.
That's all the updates for now.
Later: 19 November 2009 Yesterday I had the catheter removed, 14 days after my surgery. As I mentioned my uro, Dr Dave Bowden, is against early removal to allow proper healing. If you want your continence put up with the catheter.
So like everyone else, I have learnt to live with my new friend. It's manageable. I have had a lot of bleeding into the catheter as well as a bypass bleed linked to doing a bowel motion.
On the subject of BM, I have had to juggle my Movicol (PEG stool softener) to try and get a gentle bowel motion without diarrhea. So I do not take it every day. A very good tip when sitting on the loo is to lift your arms above your head - this lifts the abdominal organs and allows easier bowel movement.
Anyway, back to the catheter removal - It was uncomfortable, a mix of ticklish and pain. It came out with some blood that the Dr suggested could be a haematoma. I had my pad inserted in my undies and Sandi was handed the pack of pads to carry.
Well needless to say I have not had any leaking and seem to have full control of my bladder. I'm going to aim for 1.5 litres water today to test things, and flush the system, as I have a weaker flow and blood in the urine. I will call the uro tomorrow to give an update. With my first pee, quite a lot of 'debris' were ejected.
Over the past few days I have managed to walk about 4km per day, with catheter. This I would highly recommend - it promotes the healing, psychologically and physically. The catheter does rub and pull a bit, put up with it.
I have also given up my ring cushion - with the perineal cut that I have it kind of pulls at the outer regions of the incision. You have to have it at the start but later I believe it becomes a hindrance. What did work well for me at the beginning was to sit in an aluminium frame fold up nylon camping chair with my ring.
I feel great now the catheter is out and I am dry, and Dave is confident the PSA test in 2 weeks time will go well. Next to robotics, he is convinced that the perineal op is greatly advantageous to the retropubic RP. He felt right from the start that I would have no continence issues.
Four weeks after my op had the first PSA which came out at 0.02. Not as low as I had hoped but still good and may still drop.
No incontinence, but ED. We decided on 5mg daily Cialis with either 10 mg Levitra or 20mg Cialis on demand. I was also keen on a VED but my doctor is concerned about possible damage to the anastamosis [Tim is referring to the surgical join in the urethra], so I will leave that for now.
Otherwise I'm recovering well - the wound is a bit tender still but I have been doing a lot of walking which causes it to rub.
Urination is a bit tender and I can sometimes feel the anastamosis, but the main thing is that continence was 100% from day 1.
I started work today, 5 weeks after the op, and am doing a 5km charity walk tomorrow evening. PSA follow ups are 3 monthly for 2 years.
Thats all for now. This is a brilliant site. Thanks to Terry and all the contributors.
I was relieved to get my PSA reading in at less than 0.01. This had been worrying me since the one month PSA was 0.02. My uro was not concerned - his theory is that bits of prostate tissue left behind can survive for a while, but lacking the proper vascular structures, will die off.
So with the cancer no longer an issue, incontinence never being an issue, my focus for now is on ED. I am taking daily low dose 5mg Cialis, have purchased a Vacurect™ VED, and have started using Trimix injections. Some observations.
The VED works well and produces usable erections although the erection is only after the ring.
Higher dose Cialis, Viagra and Levitra do little or nothing.
The trimix works to give normal erections, although I do get some pain. I started off at 0.5 ml dose which was far to strong and after 2.5 hrs was getting worried. I have reduced to 0.15ml and that gives 1hr plus still with pain, so will look at 0.1ml next. These doses are low, and the Cialis my be having a synergistic effect.
Doc still very confident that all functions will return, says give it 6 months. Still happy with choice of treatment and choice of urologist.
It is almost 11 months since my surgery. In brief my situation is as follows.
PCa - clear, PSA less than 0.01
Incontinence - nil from day 1
ED - work in progress - quite a few developments which is the part I'd like to expand on.
Four weeks after surgery I was put on daily 5mg Cialis, and also purchased a VED. The logic of the Cialis was to promote blood flow, if not achieve erection. The Cialis in short has had no outward effect on erections.
After three months I started using trimix injections, which were 100% effective at a low dose of 0.05ml. I did however have a lot of penile pain. I got a modified formula of 50% less PGE1, which did not change the pain. I stopped the trimix and found that without it I could achieve a usable erection, even without the Cialis. Sure it's nothing as good as it was but hopefully work in progress and will improve.
Unfortunately at about 6 months I developed some hardness in the end of the penis, which took a slight deflection to the right. This hardness disappeared followed by a lump near the base and almost a slight s- shape erection. I'd read enough here and on other sites to know about Peyronie's and decided it was time to visit my uro.
When I told him my research indicated that up to 20% of RP's develop Peyronies his response was - Were these medical websites? [Some studies (done by medical people and reported in medical journals) indicate that the level of Peyronie's is probably under-reported at the stimated 16% in one of the latest studies and this is borne out by the MiniPoll of Yana members earlier in the year.] Reason is that many men develop curvature post RP as the urethra is shorter and bows the penis. This is normally cured with time and is not Peyronies, which is infact a calcification, hard if impossible to reverse without surgery. Normally according to him, erections are fine upstream (pardon the pun) from the plaque, which itself restricts blood flow.
To come back to my case - he wasn't worried about the end of my penis but was a bit concerned around the lump at the base, which is probably Peyronies. His advice - monitor and see if anything gets worse. On no account to use injections which are contra indicated. To "boost things" use Cialis on demand 20 mg – (does not like Viagra due to side effects) Now on the general ED side, Terry always summarises that this is the major surgical side effect reported by those with low post RP PSA's. [This is a major surgical side effect for virtually all men. Much depends on the defintion of ED (erectile dysfunction). The surgeons claiming the highest level of recovery often have defintions that might not meet men's expectations.] My uro however considers me "unlucky" as he would have expected a better outcome by now given my age and circumstances. I feel quite positive however as I am able to have sex unaided although ED is hardly a thing of the past. I don't have his stats but he seems to get good outcomes especially with younger patients (younger than 60)
Now in closing a few general discussion points coming from our meeting. I may be misrepresenting but these are my recollection. The discussion was around appropriate treatment:
AS or radiation over 70, reluctant surgery.
AS considered over 60 if patient wants, and PSA less than 10 and GS OK.
Under 60 - Intervention necessary - no difference in RP vs radiation BUT no salvage after radiation failure. Surgery: Perineal has advantages over RRP (refer earlier comments on good ED and incontinence.) No difference between laparoscopic and robotic in the hands of a good surgeon - Robotic not available in South Africa, where standard is RRP, with a lot of PRP experience in Johannesburg from Dr Lance Coetzee's teachings.
This is a somewhat basic summary and is by no means what many experts suggest. On the Choosing A Treatment page on the site there is a link to the NCCN (and other) decision paths which expand on these basics. Personally I have never understood where and why youthful age comes into the decision making process. It seems to me this is basd on outmoded pre-PSA thinking.
Once again thanks Terry – this is a great site and source of comfort to many.
Greetings from Cape Town to you all in cyberspace.
It is now 20 months from my RPP. I am in good health with the following.
PSA remains less than 0.01
Fully recovered from ED - function started to return after about 7 months. So I guess I have a lot to be grateful for. I put it down to my age, my choice of treatment - Perineal prostatectomy and my surgeon.
On the downside I have developed Peyronies quite badly. Having been through the resources there doesn't seem a lot worth doing. I have a dorsal bend about 45 degrees. Fortunately I am still able to have sex fairly normally. If there is anyone out there who has had success with Peyronies, I'd like to hear from you.
Keep strong and to Terry, thank you for giving so many of us hope through this great website.
I am coming up for 2.5 years since my surgery. I have moved to bi annual PSA checks. Since surgery my PSA has been <0.01 ng/ml. I am fully recovered from the surgery effects of ED, but have developed Peyronies. I am not being treated for this as it seems a bit pointless. Having scoured the net there seems little chance of correction, and I am still able to enjoy a normal sex life.
If however there are any good experiences of treatment of Peyronies please let me know.
All in all I am in excellent health and proof of a successful outcome of a younger diagnosis.
Thanks to Terry for keeping this going, and providing help and hope to those of us diagnosed with PCa.
Life seems back to normal I go for PSA tests twice yearly without anxiety. So far all <0.01 except the last which was reported as 0.01. I am going for my 2nd 5 yearly colonoscopy as colon cancer is prevalent in my family. My gastro advocates everyone to have one at age 50 as early colon cancer is so easy to remove during the procedure.
The Peyronies is no better or worse and I have not pursued any treatment as this does not affect my sex life in any major way. I do not want to explore the surgical route.
ED remains a thing of the past but took about a year to come right although my surgeon expected a quicker recovery.
Thank you Terry for keeping this going. You are an inspiration to many and the Yana site helped me more than anything during my ordeal. Without hesitation this is the first place I point people to during or after diagnosis.
PSA remains <0.01 so all is good on that front. Life is normal and I have no side effects apart from the PD. It is the 5th year since my RP and as such I will be moving to yearly PSA checks.
This site is a great help and I have referred a few people here. Terry keep up the great work.
Current PSA is <0.03 which is on a Roche protocol.All is good health wise and by this sensitivity undetectable. I have adopted a low carb high fat diet which has radically improved my cholesterol and triglycerides and all other blood markers. Google Tim Noakes it you are interested.
My results are testimony that PCa can be cured and even a diagnosis at a young age is not a life sentence. Please contact me with any questions.
Another year has passed. I have not yet been for my annual medical including PSA but no longer feel any anxiety. Life is normal and I focus on a low carb high fat diet which works for me. As always I am available for anyone to contact me and if I can help one person through this journey it makes me fulfilled. To everyone out there stay strong.
All good - PSA still <0.01
Tim's e-mail address is: timandsandi AT gmail.com (replace "AT" with "@")