Mens Health Ride: a group of guys having fun, and occasional talk about their physical and mental health issues, all in an enjoyable atmosphere. Here we are at Mt Hotham.
I was diagnosed with prostate cancer, and operated on, in 2018. I was inspired by Dan’s experience with prostate cancer, where Dan wrote a blog on his journey from discovery to operation to life afterwards. A very interesting read, and worthwhile checking out.
The blog was useful for me, and I assume, my journey could be useful for others as well.
Here follows my journey – my experiences, my emotions, and my outcomes – from being diagnosed, to being operated on, recovering, and life afterwards…
In July, my PSA reading was considerably higher than previous readings. Being always fit and healthy, I was pretty complacent, expecting all to be OK. Unfortunately, further tests confirmed that I had localised but aggressive Gleason Score 8 cancer. Not the best of news, but I spoke to many men who had been through similar experiences, and I proceeded with a positive attitude.
Eventually, after much soul-searching about the best way to proceed, I had a Da Vinci Robot-Assisted Radical Prostatectomy on Dec 5th, by Dr Kooner, one of the best and most experienced surgeons in Australia.
The surgery indicated that the cancer was not as aggressive as earlier diagnosed, and the anomalies picked up in the PSMA were non-cancerous. I could not have expected any better news.
At the time of writing (Dec 16), my recovery is progressing better than I would have anticipated.
What follows is my journey from first suspicions, to more evidence, to definitive confirmation of the cancer, to the confusion as to what path to choose, to the operation, to being a patient, to recovery, and back to normal life (I hope…this section hasn’t been written yet!?)
Do I have cancer?
Jul 24: appointment to have my annual check-up including a PSA test.
Aug 1: blood test for my annual check-up.
Aug 3: results of the blood test returned:
- PSA was 5.8, up from from 3.8 8 months ago.
- My GP, Dr Stevens, who is very diligent, insisted I see a urologist. She referred me to Dr Tim Nicholson in Orange.
- Naturally I was slightly concerned, but not really. Because I’d only been in hospital for minor operations (broken leg, vasectomy) I was (mistakenly) super confident that the PSA was elevated because I cycle 4-5 times a week.
Aug 10: further blood and urine tests for Dr Tim Nicholson.
Aug 17: DRE by Dr Tim Nicholson found some suspicious lumps:
- Neither Dr Nicholson or myself were terribly concerned. The logic being that the lumps were only minor, and the further tests requested on Aug 10 showed that my PSA had actually dropped to 4 point something.
- I, again mistakenly, had stopped cycling before this test, and put the lower PSA down to this ‘fact’.
- Just to make sure, Dr Nicholson ordered an MRI.
- Psychologically, I was still super confident.
- There are three types of biopsies:
- transrectal ultrasound (TRES)-guided systematic biopsy
- transurethral biopsy
- transperineal prostate biopsy.
- Dr Nicholson didn’t mention the transutheral type, and recommended the transperineal type, because the chance of infection is minimised, and this technique is more accurate.
- I went with his advice, and agreed to the transperineal prostate biopsy, even though it causes more discomfort to the patient.
- Dr Nicholson was due to leave on a holiday. Because we weren’t concerned too much, I agreed to have the biopsy upon his return. Luckily that extra month’s delay in diagnosis didn’t have consequences further on with the cancer escaping the prostate.
Oct 11: Biopsy by Dr Nicholson at the Orange Surgery Centre.
- Prior to receiving the results, I did some reading up on the types of treatment for prostate cancer, and the meaning of Gleason Scores. But not a lot. I was still pretty confident (not super confident, as previously, though!). My wife accompanied me to the Urologist’s as support.
I have cancer
Oct 18: Tim — he asked me to call him by his first name — greeted me with “I’m sorry to say that you have cancer”.
- Again, I wasn’t too concerned. I have annual check-ups. The cancer would be localised. These days, cancer is not the big ‘C’ word when it is caught early (in most, or many, cases), and is very treatable.
- I also hadn’t had time to digest the news yet.
- My wife took it pretty well also, which helped me with my emotions. Leading into this appointment, we both were sure that it was not going to be cancer. So, when Tim informed us that it was cancer, I think that both of us were more surprised than anything else.
- The Gleason score of 8 was a bit disconcerting, but I was still confident that it hadn’t spread — again, because I have regular annual checkups.
- Tim ordered a CT and Bone Scan for evidence of metastasis.
Oct 20: The fact that I had cancer hit home.
- It was only for a day, but I was pretty down this day. I, in fact, shed a tear or two, if I remember correctly.
- But that was it. After that, I tried to remain positive for the rest of the journey. Again, using the theory as previously mentioned.
- I spoke to my friends who’d also had Prostate Cancer, and talked about their experiences, and how they felt.
- I spoke to doctors who’d also had Prostate Cancer, for a more medical (but still personal) perspective.
- I discovered that there are a lot of men who’ve had prostate cancer many many years ago, and are living a normal life.
- This all helped me to stay positive!
- I remember one person who rang to talk about his experiences. He left a message, which spoke in a sad voice, and warned me about trying to avoid all the pitfalls that he had experienced. I did not return his call, as I was determined to remain positive. Many of the men I spoke to had had difficulties (such as infections after the operation, incontinence that lasted 6 years, and blockages in the urethra which caused incredible pain from the build-up in the bladder), but they all spoke in a supportive and positive way. All I can say is: Thanks guys! It was very cathartic, and helped enormously in my intent to stay positive.
- There is an excellent Prostate Cancer Support Group in Bathurst (where I live), but that is ‘not my thing’.
- Now that I know that I have cancer, the following tests became interesting as to how extensive was my cancer.
- Because I have yearly checkups I approached these tests with confidence that the cancer would not have had time to spread. But I was still keen to have this verified by the test results!
- The tests were not painful at all. I had a funny metallic taste in my mouth for one of them — cannot remember which one.
- For the second test, I was injected with radioactive material. I was asked to return for the examination in a couple of hours, but in the meantime avoid close contact with pregnant women and young children! Still no pain or even discomfort during this time.
Oct 29: appointment with Dr Kooner
- I arranged to see Dr Kooner after speaking with the doctors in town who I use as a GP, and with whom I regularly cycle.
- If the GPs have used them personally, and recommended him, then that was a promising sign that he is a good surgeon.
- All the literature strongly recommended that I get a second opinion — even our health fund.
- Dr Kooner was the first person to inform me of my results of my Bone and CT scan.
- Dr Kooner was experienced in the Da Vinci method of surgery. Dr Nicholson, my original urologist, only performed ‘open cut‘ surgery. [My term, as I used to work in a mining town – Broken Hill – for 8 years.]
- My wife accompanied me to this appointment, as she did for all my appointments. She was terrific support! Thank you Dianna!
- As expected (!?), the bone and CT scans came back all clear. My prostate cancer had not spread to the bones (which is the most likely location for metastasised prostate cancer).
- I had not decided on the approach to follow to treat my cancer at this stage. I was leading to robot-assisted surgery, but was also thinking of radiation treatment (of which there are many variations) as well. I had discounted experimental treatments (such as this green concoction from Spain, which a friend of mine took and which he reported had eliminated his cancer), and brachytherapy. [Why? I’m not really too sure. It was brushed over by everyone I spoke to, and I guess that was good enough for me.]
Nov 1: appointment with my GP, Dr Stevens.
- Just wanted a chat with my GP on her thoughts on prostate cancer and her dealings with patients. I was trying to talk to as many and varied people as possible to enable me to make the best decision possible in the treatment to choose, and what to expect in the short and long term of my life.
- Unfortunately, without saying it in words, my GP left me in a low mental state. That afternoon, and night, I was actually scared, in what I had to look forward to with my life. I was later to find out why, but at the time, it was not very comforting at all. [May I just add that my GP is an excellent doctor of the highest standard, and I appreciate her honesty.]
Nov 2: a day of consolidation of thoughts
- After the previous day’s experience at my GP’s practice, I did some serious thinking.
- I had to weigh up the evidence: on the one hand, the many guys that I had spoken to and their mostly successful operations, followed by almost normal lifestyles; on the other hand, the feeling I was now in; and (if I have an extra arm) on the other hand, the local doctor who left his testing too late, and ended up with metastatic prostate cancer needing chemotherapy.
- there was no reasoning given for the sombre mood I had from yesterday’s GP appointment. Without a reason, I gave this factor a low consideration.
- there was the local doctor with metastatic prostate cancer. This was because he wasn’t having regular checkups of his PSA. I had been.
- there was one chap who had an infection which caused him some considerable stress. Infections can happen in any operation. Prostate cancer-wise, this was a successful operation. He is living a normal life.
- there was another chap who had incontinence for 6 years. He struggled, with many infections, until he had a sling inserted.
- otherwise, all the other guys I spoke to had successful operations.
- Given the above musings, I felt a lot better that my situation had a very high chance of a successful outcome. I continued the journey in a much better frame of mind!
Nov 4: the day before my appointment with my original urologist, Dr Nicholson
- Time to make a decision as to my treatment 😩 …
- From earlier reasoning, I had narrowed my treatment to radiation or radical prostatectomy.
- I drive the Bathurst Community Transport ‘radiation bus‘ [a daily bus with patients going through radiation treatment for their cancers to/from the Orange Base Hospital]. I spoke to many men who have been undergoing radiation for their prostate cancers.
- I got the impression that the radiation was painless, except for the bus ride, with a full bladder, over the many bumps on the Mitchell Highway. The radiation treatment took about 6 weeks or so, for every week day.
- The only side effect that the men experienced was fatigue.
- I believe that radiation treatment is the goto procedure for those whose life expectancy is no more than about 10 years or so. I am a fit and healthy (well, except for the prostate cancer!) 66 year old with at least another 20 years or so of life left. [Although I do push the limits — I push bike ride 200km a week, trying to dodge drivers who are either are on their phones, or have taken a set against bike riders; and I motorbike ride on a Suzuki SV650S.]
- For those like myself, radical prostatectomy is recommended. For one, if I chose radiation, and the cancer returned, radical prostatectomy is not an option. [I never found out why though!]
- With diagnosis and treatment of prostate cancer still with a long way to go, I did toy with radiation treatment, given that it is painless, and that there is a possibility that in 10 years time, there will be new and more effective treatments. But, I’m not a risk taker, and decided to take the recommended treatment.
- Now I had to decide as to the type of radical prostatectomy — ‘open cut’ or robot-assisted. [There is a third: Laparoscopy — basically keyhole surgery but without the use of robot assistance.]
- There are many research articles on whether robot-assisted is better than laparoscopy, such as here. Robot assisted is much more costly. Research tends to show that there are no significant differences in long-term outcomes (although my gut feeling [no apologies for the pun] is that we are not comparing apples with apples. Those with trickier situations are more likely to choose the robotic surgery. Consequently the samples for the research are not the same).
- Recovery time is much quicker with robot-assisted surgery.
- I eventually chose robot-assisted radical prostatectomy, because:
- I was lucky that I was able to raise the extra $15-20000;
- I had aggressive cancer with some of it close to the wall of the prostate, and I wanted the best doctor with the best possible technique to give me the best chance of a good outcome;
- I wanted a quick recovery.
Nov 5: appointment with my original urologist, Dr Nicholson
- Dr Nicholson discussed the results of the Bone and CT scans.
- I felt a bit embarrassed to advise Tim that I had chosen to go with another urologist, Dr Kooner — even though the reason was justified, as I wanted to use robot-assisted surgery which Dr Nicholson does not perform.
- We were comforted when my wife asked Tim the question: “what treatment would you use if you had a similar prostate cancer?”. Tim replied “robotic-assisted surgery”!
Nov 8: PSMA PET scan at St Vincents Public Hospital
- The PSMA PET scan involves an injection of radioactive material followed by a scan. It picks up prostate cancer in locations other the bone. In Australia, the PSMA PET scan is not covered by Medicare, and involves an expense of about $600 to the patient.
- From my reading the PSMA PET scan is still categorised as experimental, but the results are so convincing that most urologists use the PSMA PET scan when the situation calls for it.
- In my case, the cancer was aggressive, and was close to the boundary of the prostate, so it was worthwhile checking for the cancer having ‘escaped’.
- I was confident that the results would be negative, for reasons stated earlier.
Nov 12: result of PSMA PET scan by Dr Kooner
- There was no indication of the prostate cancer in the rest of my body!
- It definitely appears that my cancer has been detected in the nick of time. Another year (or maybe months) and my cancer may have become metastatic.
- Again my wife supported me to the appointment.
Nov 27: pre-operation with Louise, Dr Kooner’s nurse.
- With this appointment, I began to realise that the operation was getting close. I started to become a bit apprehensive. But I concentrated on being positive, and not letting negative thoughts dominate.
- Apart from that, I cannot remember much about this appointment. I know that the 450km round trip was worth it. Meeting Dr Kooner’s nurse, Louise, face-to-face is always a good thing. Much better than over the phone. I guess she covered what to expect before and after the operation, and the recovery process — incontinence and erectile disfunction, and care of the tender abdomen.
- Dianna accompanied me again, which was good.
- For the days and weeks leading up to the operation, I tried to be as fit as I could, and have good nutrients in my body, in the belief that this would be beneficial to my recovery. I road 3 50km rides before today, and upped my 5BX routines (which I have been doing intermittently since 1978), especially to strengthen my stomach muscles. [I have no idea whether this was a good idea…it seemed to make sense that it would be beneficial.]
- For the month before the operation I strengthened my pelvic floor muscles, and attending a physiotherapist who specialised in this area to do these exercises as correctly as possible.
Dec 4: pre-admission to St Vincent’s Private Hospital.
- The hospital was very efficient. We were early, yet we still didn’t have to wait long. The staff were very friendly while still being extremely competent.
- I had already completed my pre-admission forms, and emailed them in, but they hadn’t been forwarded to the correct personnel. Luckily I had the originals with me! [Although Grace, I think that was her name, did say many people don’t complete these forms beforehand, which slows down the process.]
- Louse had tried to schedule me in early, but I discovered that my admission time for the operation was 2:30pm. Oh well!
- To me, I was treating it as just an operation, something that most people, if they live long enough, go through. But, my wife, my two ‘kids’ and my Mum were all here (from Bathurst, Melbourne, Launceston and Canberra) were all staying in Sydney to give me support. They were great support and I valued their presence immensely. [Even if I had to watch them eat dinner (at Baccomatto Osteria), and then breakfast (at Simplicity at Barangaroo), while I was on an enforced fasting.]
- I had to insert two glycerine suppositories, to clean out my back passage. A most unusual experience, but it seemed to work (only 15′ wait for me, while the instructions said from 30′ to an hour!?)
Dec 5th: finally, the prostatectomy day…no turning back now!
- Breakfast, for some, in the morning. I was on a fast from midday the previous day, with only water until lunch time today. Followed by a gentle stroll through Darling Harbour.
- We (Dianna, Frances and Marnie) got to the hospital at 2:15, a quarter of an hour early. We did not have to wait. I was taken straight through to get ready.
- Preparation involved getting into a very becoming blue hospital gown, ECG, and blood pressure tests. My blood pressure was pretty low (about 91/60 at a guess, but this is expected apparently before an operation). Oh, and I had to have an enema, which took me by surprise. I was expecting I had to digest something, but no, the nurse said roll over, and she inserted this stuff up my back passage! Took me completely by surprise! Anyway, it worked very quickly.
- As has been the case all the way along this journey, the medical system, and staff, have been very patient focussed. It always seemed to be their prime concern that I understood the processes, and that I had realistic expectations, and that I was comfortable with all that was happening to me. I cannot think of any other business where the customer’s needs are of such a high priority.
- This is good, as I am completely at their mercy. I trust that the liquids being injected into me are the correct quantity and quality; I trust that the doctors and nurses and medical staff are going to do the absolutely best job that they know how; I trust that my requirements are correctly communicated to the next ‘shift’.
- That trust turns out to be well-founded. I am truly indebted to all involved from the start of this journey with my diligent GP, to the extremely skilful Dr Kooner, to the nurses and specialists involved with my recovery. Thank you!!! [Where else are we in a similar situation? We cannot trust banks, lawyers, financial advisors.]
- I said goodbye to my lovely supportive family, and I was wheeled through this rabbit warren to a waiting ward. [It happened to be that I was operated on in the public hospital next door!? The private hospital rents an extra operating theatre from the public hospital…surprise, surprise.]
- Mentally I was quite calm, joking with those around me (although, as is usual with my jokes, nobody else found them very funny!?)
- After chatting to the Anaesthetist (Dr Emma Halliday) and her assistant, a cannula was inserted into my left forearm (preceded by a local anaesthetic). After that I don’t remember anything until I was in my ward.
- It took a long time. Apparently there was an emergency in the morning. I was Dr Kooner’s 4th prostatectomy that day. In all, I started preparation at 2:15, and didn’t get back to the ward until midnight – almost 10 hours! From the anaesthetists bill, I gather that I was under for over 4 hours. Hence, I’m guessing, that the operation would have been over 3 hours.
- I don’t remember much that night. I don’t remember sending my wife a text to say that I was out, and everything seemed to go well. [The third that she had received, the previous ones from Dr Halliday and Dr Kooner.] I do remember being in some pain, and being given some morphine. But maybe that wasn’t then, as I probably had IV pain relief. And it probably was the next morning. I don’t really remember!
- For the next few meals, it was soup plus a juice. No solids. And of course my medications four times a day: pain killers, Senna and something (to keep my motions soft), and antibiotics.
- My family came to see me the morning after the op. Dianna came by herself at 9, pre-visiting hours, and Frances, Marnie and Mum came at 10, after having breakfast at Forte. My brother Rod came in from Hurstville. It was invaluable to have all of them there. Thank you!
- I was able to entertain them (or maybe they entertained themselves) until lunch.
- I was feeling very tender and sore; I had a catheter; I had a drip; I was wearing compression socks. This is my first realisation that I had just undergone major surgery.
- I didn’t have much energy. But, the nurses got me walking.
- Dr Kooner visited me in the morning, but I wasn’t really in a great condition to get all the answers I wanted. I do remember him saying that he was very happy with the result of the operation. That was very comforting!
- Dignity and decorum goes out the window –> helping to shower by the nurse, the Irish nurse helping me with the catheter, discussions about the texture of my motions, techniques to use to regain my erections, how to use my urine-filled leg bag, etc. These are conversations and situations that I don’t think I’ve ever had, let alone with young women I don’t even know!
- On the following day (7th), Dr Kooner visited me quickly before he headed off to his weekly consultation at Bowral. He was sort-of happy for me to leave after lunch, even though it was only a day and a half after the operation.
- I had my first solid foods for 45 hours! [If only a turkey sandwich, it still counted!]
- Dianna drove me home. It was a slow 200km trip back to Bathurst. I was sitting on a blow-up donut seat (to take the pressure off of the perineum), and with the back of the seat set well back. We stopped every hour or so to give my tender areas a break, and to empty the leg bag. Dianna drove slowly to try to smooth the bumps in the road (and NSW roads aren’t the best in the world, in most parts of the state).
- My recovery involved
- no vigorous exercising (walking was OK),
- no lifting and pushing etc (to avoid pressure on the lower abdomen),
- no foods that produce gas (as the CO2 pumped in during the operation needs to escape, and any gas build up in the colon is going to put unnecessary pressure on the area of the operation, which causes pain, and possible damage),
- always wearing compression socks (to reduce the chance of DVT because of the lack of movement during the recovery period),
- completion of the two packets of antibiotic capsules,
- movicol and the Senna tablets to keep the motions soft (again, any pressure ‘down there’ does become very uncomfortable),
- pain-killers where necessary.
- My recovery went extremely well:
- I stopped the painkillers only 3 days after the operation.
- My discomfort from the operation and the stitching which made standing erect difficult eased after only a few days.
- After the catheter was removed, my incontinence was acceptable from day 1. My muscles were strong enough to help me make it to the toilet without any rush, and without any leakage — when I felt the need. Sometimes a dribble would occur without any warning. I started to learn when this would occur (such as when standing up from the couch), and I pre-empted the situation by tightening my pelvic floor muscles before I stood up.
- After only 2 weeks, I felt really good. I had a big bruise where they removed the prostate and lymph nodes, but it was not sore at all. I had an issue with the drainage hole not closing up properly, and some reaction to the dressing, but both those issues were under control now. [I checked with my local GP just to make sure. They put some steri-strips on it just as a precaution.]
- But, I still had to be careful not to put too much pressure on my lower abdomen. I avoided gassy foods, and didn’t do any lifting or pushing etc, tried to eat healthily (generally speaking).
- I was still getting up 2-3 times a night to empty the bladder, which was starting to annoy me. [I’m lucky in that my wife and I are used to sleeping all through the night, undisturbed.]
- One week after the operation, I had a cystogram to check the progress of the stitching on the urethra. The radiologist was happy with its repair, and Louise, Dr Kooner’s nurse, removed the catheter, much to my relief.
- I had an appointment with Dr Kooner who reported that:
- he is confident that he cut out all of the cancer;
- even though the cancer had started to grow on the outside of the wall of the prostate, Dr Kooner was confident enough to not ask for follow-up radiation.
- the cancer wasn’t as aggressive as first diagnosed, and was ‘only’ a Gleason score of 7;
- the anomalies in the lymph nodes turned out to be non-cancerous;
- I could not have expected any better news.
- I had an appointment with my GP just to keep her in the loop, as she will be the one to monitor and lead my progress.
- I had a follow-up appointment with my physiotherapist. She reported that she has male clients who have to change their soaked pads 6 times a day. I use one per day, and even then, I’m not too sure if there is any urine in the pads. I’m amazed at my recovery rate!
Dec 26th: Three weeks after my operation
- I was down to only waking up once per night for urination. And there were two nights where I woke up (at the usual time of about 2:30am) but managed to go back to sleep without having to get up. I hope that this happens more often in the near future!
- I only used one pad per day (as I had been doing since day 1). I started experimenting with Light absorbency pads, which worked out just fine. I think I’m lucky with my light incontinence…the exercises pre-op helped I’m sure.
- I continued to do the exercises prescribed by my Pelvic Floor Physio.
- My bruising had almost disappeared, but I still felt uncomfortable strain on the ‘entry points’ when I stretched upwards. And at times, the abdomen still felt a bit tender…a good reminder to not push my return to normal routine too quickly.
- I was still using special antibiotic gel when washing…probably ultra-cautious I guess, but the hospital were almost paranoiac when it came to cleanliness. Fair enough too!
- Not being able to return to exercise (apart from walking, but with the temperatures regularly in the high 30’s Celsius, that didn’t happen too often), and eating generously over Christmas, my new Bluetooth scales were not being kind to me. I was tempted to return them!
- I was still wearing compression socks at night, and during times of inactivity. Ultra-cautious again!
- I should be taking Movical to make sure I have no pressure in the intestine, and lower abdomen, but I was being ‘prudent’ with my dosage. I would only take Movical and/or prune juice when I thought that there was a danger of the bowel becoming clogged, such as after a day without any motions, or after a huge meal.
Progress on my other more sensitive issues (NSFW-ish)…
I started taking Viagra 2 weeks after my operation (as prescribed by my urologist). I was advised to start my rehabilitation of my erection as soon as possible. For some reason (pride?), I was reticent about taking Viagra, but eventually I started the course — half a tablet every second day.
I took it for 8 days. I initially took it in the morning, but the nurse (Louise) advised me to take it in the evenings. One of the reasons was that each time I took it, I had headaches (I always thought that Viagra reduced the frequency of headaches 😜) and felt a bit poorly. Taking it in the evenings should allow me to sleep through these symptoms. It did, a little.
For Christmas, with the family about, I didn’t want to feel poorly, so stopped taking the Viagra.
After Christmas, 4 weeks after my operation, I gained the courage to make love to my wife, not really knowing what to expect. I was pleasantly surprised to experience ‘half an erection’, which gave me optimism on the future. [BTW, earlier in the piece, my wife and I had discussed making love post-operation, which I think was good for both of us — rather than ‘having an elephant in the room]
To be written as my life continues on post-prostatectomy, which will include, hopefully, bicycle riding and motorbike riding!
My journey was an experience that I had not encountered in my life before. I can say it wasn’t an unpleasant experience, and in many ways a beneficial experience.
I was nonplussed by the amount of support I received from my family, my cycling buddies, my motorbike mates, the U3A committee members, my Mum’s church group, and many many others. The devotion of my wife I am forever thankful for. It’s almost worthwhile getting ill!
My fitness and positive attitude helped considerably in both the preparation and recovery.
I am forever indebted to Dr Samantha Stevens and Dr Kooner for their diligence, attitude and skills. Basically, they saved my life.
The Australian Medical System comes under criticism (as does everything these days it seems), but if there was anywhere I would prefer to be ill, it would be Australia. The work ethics and standards are of the highest order.
And finally, thanks to this journey, my conclusion is now a fair way down the track.