I stumbled on this website and it struck me that most postings are those seeking medical advice/assurance etc. I think this is entirely understandable. But it may also be useful to share expereiences of a process. So here is my contribution. it's a little over a year old now - and as an update, my recent one year PSA result was "undetectable". So so far so good
From viral rash to radical prostatectomy.
A few reflections on the journey
These days I work part time as a research psychologist at the Australian Institute of Family Studies. During 2010, I dropped my formal working hours from 4 days per week to 3 days per week. One of my days off was to be spent with my 2 year old granddaughter, Allegra. The other was for me. Wednesdays with Allegra have been sacrosanct. We start the day with a music class and then do whatever takes our fancy. She is cheap to entertain, one of her favourite activities being riding the suburban trains. We have a ball. The other day, Thursday, has been less successful to date, too often defaulting to work commitments. That is about to change!
Late in 2010, I developed a rash on both my hands. I assumed that like most medical things in my life to date, it would clear up of its own accord. Three days later, the rash and associated itch were driving me crazy. The itch would get considerably worse when using a keyboard, presumably because typing caused my hands to heat up somewhat. Not unusually, I was under pressure to complete a report at the Institute. By day three, I was alternating between typing until I could bear the itch no longer, then plunging my hands into cold water for a while, and starting the process again. I had tried a variety of creams on my hands but nothing seemed to have any impact. I decided to make a time to see Costa Vakalopoulos, my GP.
To my surprise, it had been more than 3 years since my previous visit to Costa. He asked if I was spending any time with young children. When I mentioned my granddaughter, his next question was whether Allegra had recently started child care. She had! He suggested that it was likely I had picked up a virus through Allegra.
Ironically, my visit to the GP coincided with the rash improving considerably. Indeed by the time I arrived home, the symptoms had all but disappeared. My wife Banu puts it down to the “Neem Oil”, a preparation her Grandmother used to give her as a child in Malaysia. Unlike Banu, Costa did not prescribe anything. What he did do however, was to check on how long it had been since my last PSA test. We did another PSA and I made a time to see him about the results. A subsequent phone call from the surgery to confirm my appointment raised my anxiety a little, so I was not entirely surprised when Costa told me at this appointment that my PSA had risen from 3.4 to a bit over 8. He referred me to a Urologist, Dr A, whom Banu and I eventually got to see early in the new year.
Like the other two urologists with whom I subsequently had in-depth conversations, Dr A was informative, respectful and open to considering questions ranging from the considered to the utterly naive. He suggested in the first instance that I get another PSA test, especially as the raised PSA had coincided with a rash that probably had its origins in a virus.
When Banu and I received the news that my second PSA reading was as high as my earlier one – indeed a little higher, it seemed logical to proceed to the next diagnostic phase, a biopsy. Dr A had a slot the next day at the Epworth Hospital in Melbourne and was then going on holidays for three weeks. The Director of my research institute had been very supportive from the outset. “Do whatever you need to do; take whatever time you need.” I decided to take the available time and so early the next morning, we found ourselves at the Epworth for what we had been assured was a straightforward day “procedure” with a relatively minor risk of complications. The most likely complication (though still with a low risk) was post operative infection. To reduce this particular risk even further, I had been prescribed a crash course of antibiotics.
The day procedure introduced me to Richmond’s Epworth Hospital routine, which I imagine is similar to the routine of hospitals throughout Australia. There is a lot of paperwork and a lot of cross checking. Are you Lawrence John Moloney? Is that what it says on both your wrist tags? Can you tell me you date of birth? And so on! Gradually, patients work their way through the system, losing possession of all valuables and items of clothing on the way and ending up in the standard backless hospital gown, waiting for the “procedure” is to take place.
My experience of this day at the Epworth was that staff were all friendly and proficient, explaining what was happening each step of the way and regularly enquiring about my wellbeing. The aneathsatist, who paid me a visit an hour or so prior to the procedure told me that I would be sedated and would probably have no memory of the event. There is clearly a significant technical distinction between being sedated and being anaesthaetized, though for me, the experience of both is virtually the same. As one who has never had a problem with anaesthetics, the main difference is linked to recovery time and the fact that after sedation for the biopsy, I was encouraged to eat and drink before leaving the hospital. After the anaesthetic, which I was given for the prostatectomy (described in more detail later), I was permitted only sips of water for a period of almost 24 hours.
For the biopsy, I was transferred to a bed and wheeled along several corridors into a waiting area and eventually into a room in which the procedure was to take place. As I was wheeled in, I noticed that Dr A was working on a laptop with a screensaver that was displaying what I took to be family photographs . The room appeared to be one in which a number of things happened – a sort of cross between an open plan office and an operating theatre. Dr A and the aneathsatist were chatting amiably to each other about holidays. A number of other people were busy doing things, but it was impossible to say whether what they were doing was linked to my procedure or to other things that might have been happening that day.
I felt mildly affronted that my grand entrance had not been acknowledged. My dealings with Dr A up to that point had been open and very respectful, but I was now at the heart of his territory and he gave the impression of having other things on his mind. He had his back to me, but even if he had been looking vaguely in my direction, I’m not sure I’d have had the chutzpah to have drawn attention to my presence. I felt even less inclined to address him after the aneathsatist asked me to lie on my side so that my backside was presented for the world to see through the gap in the hospital gown.
I had been told earlier that the procedure required sending a probe through the “back passage” and I understood the pragmatics of rolling myself over at this point. Of course it would have felt better to have remained on my back while still conscious, even though I was aware that this is not where I would have stayed once the sedation kicked in. I guess even at moments like this, we strive to salvage whatever dignity we can muster. Somehow, what part of our anatomy we present to the world whilst unconscious seems to be less importance. I suddenly felt a surge of empathy for Banu who years earlier had been required to use stirrups when our children were born.
The morning after the biopsy, Dr A called me and informed me that come cancers had been found. He had kindly arranged an appointment time for that afternoon and suggested that we use this time to discuss options. Sensing my anxiety, he reassured me that making a decision was not urgent. He said that the cancer scores, which he promised to explain in more detail later, were at the better end of the spectrum. I also remember feeling somewhat calmed when he said, “If you have to have a cancer, this is one of the better ones to have”.
Banu and I went through the options more formally with Dr A later in the day. They boiled down to
• “Watchful waiting” – i.e., doing nothing until and unless PSA levels or other relevant scores continued to rise
• Radiation therapy
• Removal of the prostate.
We learned on this occasion that radiation therapy could be applied externally or internally via what is known as Brachytherapy, and that there were further options with regard to how the external and internal therapies were applied. We also learned that removal of the prostate (or radical prostatectomy) could be performed via open surgery or via laparoscopy and that laparoscopies could be done robotically or non-robotically.
In the subsequent weeks, Banu and I weighed up our options. We met with a radiation oncologist, Michael NG, who carefully (and again very respectfully) took us through the advantages and disadvantages of radiation treatment in general and Brachytherapy in particular. We dismissed this option in the end mainly because both Michael and Dr A had informed us that if the radiation treatment did not knock out all the cancer, it was very difficult if not impossible to move from this treatment back to a prostatectomy. It had also been disconcerting to learn that if I had opted for Brachy therapy, it could be unsafe to have my grandchildren near me - and certainly not sitting on my lap - for at least two months.
One of the advantages of a treatment such as Brachytherapy is that you can normally return to work or other normal activities within days. In view of the caution about the grandchildren however, I couldn’t help but wonder about the effect of standing next to colleagues or to people in crowded trains, which I do several times a week between Richmond and the Melbourne City. I never got to ask this question, but I wondered about the impact of standing close to a pregnant woman in such circumstances. Hanging a warning sign around my neck hardly seemed practical. And in any case, a woman in such circumstances may not even know she was pregnant.
During this period, I also had the benefit of listening to the stories of a number of men who had had a diagnosis of prostate cancer. All were generous with regard to their time. All were willing to answer any question I had, no matter how personal. It became clear to me that every story was a little different and that in the end, you have to make the best decision you can, based on a range of factors.
My decision in consultation with Banu was for a prostatectomy. I made this decision based on the knowledge that
• what is known as my PSA “doubling score” was relatively high, suggesting that it was likely that the cancer would continue to grow
• at least one of the cancers detected in the biopsy was relatively large
• my Gleason score of 6 (which as a lay person I think of as how well defined the cancer currently is) was at this stage encouraging
• the chances that the cancer had spread beyond the prostate were reasonably low – this was subsequently reinforced by the results of scans that I was encouraged to have
• the probable side effects of this operation – reduced urinary control and reduced erectile function –become increasingly less problematic over time for most (though not for all)
Having come to this conclusion, the next decision was who to ask to do the surgery. There are a number of factors here but for me, it boiled down to the experience of the surgeon, as well as feedback from other professionals and other men regarding each surgeon’s attitude and outcomes. I believe that Dr A or that a second urologist I consulted, Dr B, would have done a perfectly adequate job. Both had performed over one hundred prostatectomies. Both were passionate about their work and made it clear that I could call them at any time if I had questions or concerns.
But many different roads led me to the same person, Dr Mark Frydenberg. I liked Mark when I met him, an important though I admit not an essential decision-making ingredient. I also liked his sense of clarity which seemed linked amongst other things to the fact that he had done thousands of these operations. I became convinced during the meeting with Mark that I wanted him to perform the prostatectomy and somewhat to Banu’s surprise, I made myself available there and then for the first date in his surgery calendar.
I imagine it is a common response that once decided on an important course of action, we want it to happen as soon as possible. I had about a month to wait for the prostatectomy. Logically I knew that there was no rush, but during that month, I had less logical thoughts and feelings about the cancer bursting out of the prostate. I literally had to make use of some self-calming techniques, and remind myself that the objective data like my PSA scores and Gleason score, plus CT and other scans that I had undertaken, all pointed in the direction of the cancer being confined to the prostate.
A week before the operation, I had sessions with a physiotherapist and a nurse. Both were useful. Debbie, the physiotherapist gave me information about post operative bowel control which has proved to be useful. She also physically checked my understanding of and capacity to do the pelvic floor exercises which I am hoping will put me in a good position to develop good bladder control when the catheter comes out. Kay, the nurse, made sure I understood the nature of a radical prostatectomy and in particular showed me exactly how the catheter would work.
The appointed day saw Banu and I arriving at the Epworth at 6.30 am for a prostatectomy (for me not Banu!) scheduled for 9.00am. We were directed to a waiting room where my name was called within minutes. Paperwork was completed by a very polite and very efficient young woman, shortly after which we moved to the next phase of doing “the bloods”, having an ECG and attending to more medically oriented paperwork. Next came the donning of the hospital gown, dressing gown and slippers, the handing over of wedding chain and other valuables to Banu, and the move along the line to a waiting area close to the operating theatres. Sitting comfortably in a semi private cubicle, we awaited the arrival of the anaesthetist. Things at this stage were running a little late, but in due course, the Armani- suited anaesthetist arrived, introduced himself and went through his check list of issues that might impact on the safe administration of the drugs. There being no questions from Banu or me, he said he would see me shortly.
About ten minutes later, the assistant anaesthetist informed me it was time to go (Banu had had to leave shortly before that to attend to other matters). I was taken by surprise that there was no bed or wheel chair to convey me to theatre. On the other hand, I thought, “Why should there be?” I was perfectly capable of walking normally. Accompanied by the assistant anaesthetist therefore, I walked the 50 meters or so to the door of the operating theatre.
My momentary scan when the theatre door opened revealed a large room dominated at the centre by the raised operating table. I estimated there to be about ten medical staff, each of whom seemed quietly preoccupied with their own tasks. As requested, I walked from the door to the single step that had been strategically placed at the end of the operating table, then climbed on to the table itself and positioned myself with my head at the step end of the table. With my eyes now looking directly at the ceiling, I could no longer see all the medical staff. Though none had formally acknowledged my arrival, I now became aware of a slight increase in the general level of activity. I had a disconcerting sense of witnessing a well rehearsed routine in which the only newcomer – the only one who had not been present at rehearsals – was the principal actor.
During my brief journey from the theatre door to the operating table, I had recognised Mark Frydenberg, my surgeon. He was in a corner of the room with his back to me, in quiet conversation with a colleague. From my prone position, I could still see Mark to my right. But my attention was diverted to the needs of the anaesthetist, who quietly and efficiently inserted into my left arm, the device that was to deliver whatever range of chemicals would be needed during the operation. At this point, I sensed Mark approaching from the other side of the table. He greeted me warmly and asked how I was doing. I told him I felt calm – all the more so knowing that from what I had heard, I was about to turn myself over to the best urology surgeon in Australia. I sensed what I took to be a murmur of approval run through some of the staff. The assistant surgeon, a man who looked to be about my own age, also approached, introduced himself by name and quietly confirmed my assessment of Mark. It felt as if take off was now immanent. It also felt good that at the pointy end of the aeroplane, I appeared to have not one but two very experienced pilots.
Mark then did something that will remain in my memory. He took my right hand in both of his hands. He squeezed my hand several times, looked me in the eye and promised me he would do the best he could. It was a simple gesture that cost Mark nothing and in one sense, told me nothing I did not already know. But it was a profoundly humane action on Mark’s part, bridging in that instant the tension that must always exist between the surgeon as technician and the surgeon as a fellow human being.
Mark returned to the periphery of the room. Somebody to my left and close to the head end of the table was (I think) attaching something to me and simultaneously telling me that my assessment of Mark was correct – that he had been the first to being this operation to Australia and that I was in very good hands. I felt extremely calm. The last thing I remember was the anaesthetist telling me that I would become drowsy within the next minute, while I was quietly thinking, “No it doesn’t work like that – at least not for me.”
One aspect of my limited experience of procedures and operations has always been the same. Despite what anaesthetists say at the time, for me there is no sense of fade out. There is no felt time between my last memory of the operating theatre and a realisation that the operation itself has been completed. On this occasion I have no memory of being wheeled back to my hospital room and only vague memories of a nurse speaking to me whilst taking blood pressure and temperature and attending to various intravenous lines. As I drifted in and out of consciousness in my hospital room however, I seemed to remember speaking with Mark post operatively and being assured by him that things had gone well. Was this a wish on my part or had it been a real encounter? Either way, I feel sure that my “memory” of the conversation (plus I’m sure the intravenous morphine) contributed to my feeling calm and relaxed in those early post operative hours.
Sometime later in the day, the phone rang. Mark confirmed that he had indeed spoken to me post operatively but had wondered how much I had taken in. He said he had assured me at the time and was doing so again, that so far as he could tell, everything had gone well and that importantly, he had not been able to detect signs of cancer outside the prostate. He said I was an anatomically “easy” patient to operate on. I wasn’t sure whether to feel proud of my genes or just lucky.
My long day ended surrounded by flowers and family, a sense of having made the right decision (for me at least) regarding surgery vs radiation treatment vs waiting, and a profound sense of gratitude to Mark and his talented team for handing me what was increasingly looking like a second chance at life. Throughout the evening and through to the next morning, I was attended to on an hourly basis by a nurse who displayed a perfect combination of care and efficiency. The following day, the odds in my favour improved further when Mark called with the pathology results. Again, there appeared to be no cancer outside the prostate.
I have been home for a few days. Tomorrow, the catheter will be removed (oh joy!)and from there, my journey to recovery will continue. Of course I am hoping that full urinary functions will return and that I will be again be able to enjoy a “normal” sex life (whatever that is). These things are important, but somehow they pale into insignificance when I stop to appreciate the fact that only a few years ago, this cancer would have been a death sentence – not immediately, but eventually – and not a very pleasant death at that. I feel fortunate to live in a country like Australia. I feel fortunate to have Banu and my family around me. It is good to know there are so many dedicated competent professionals out there. And I thank my little granddaughter for passing on the virus that caused me to seek help from Costa, my GP.