Prostate cancer treatment diary

 

There is a Living Proof in every issue of icon. Real people, living with cancer; or real cancer patients; or real cancer survivors tell you their stories of what worked for them. 
We have a number of personal stories from prostate cancer survivors. Here is a current list:
1. Richard - tackling Prostate cancer with hyperthermia
2. Vernon - using an alkalising diet including sodium bicarbonate to tackle prostate cancer
3. Les - going to the Oasis of Hope Mexico to tackle prostate cancer
4. Ken - using the Pfeifer Protocol to tackle prostate cancer
5. John - tackling prostate cancer with diet and exercise

This article is the first in a series of personal stories on how people tackled, and beat, their prostate cancer, here Richard Beaven keeps a diary on his trip to have localised hyperthermia (Ablation or Ablatherm) at Klinik St George in Germany.

Chris Woollams asked me to keep a diary about my treatment for prostate cancer at the Klinic St. Georg, an hour outside of Munich, in Germany. My visit to the Klinik came at the end of a long ‘journey’ and I thought it worth jotting down how I got to here in the first place. 

I have been a type-2 diabetic for over 10 years and have controlled it by diet, exercise and medication in different proportions and with varying success over the years. About four years ago I noticed that I was urinating more than usual and concluded that maybe I was not controlling my blood sugar as well as I could. My personal blood test readings seemed OK so I consulted my specialist in London. He decided it was not a blood sugar problem and suggested I check out my prostate. I spoke to my GP who I used periodically for a health check and it looked as though my PSA had been running between 4 & 5 for a good number of years. This was something he had not thought to be significant. Although it was now showing a higher reading of around 7 and he decided to send me off to hospital for a consultation.  

As I live fairly central in London my choice of hospital was quite wide. The venue was decided and I therefore went to the nearest hospital for a consultation. As is normal with the NHS I had a bit of a wait, a consultation, and a decision to have a biopsy to check exactly what was going on. There was some questioning by me about the danger of infections as a friend had recently been on death’s door after the same procedure. The Consultant put the likelihood of infection into perspective for me and I decided to proceed. The actual procedure was very unpleasant. I had the last appointment of the day and it was at least an hour and a half late when the Consultant, who looked very tired and irritable to me, took his samples. It was businesslike but very uncomfortable. However, it was done. Cancer was confirmed T3 + T3. After a couple of days an infection was confirmed that saw me in hospital, on a drip, for several days!  

When I had recovered, a further consultation followed and I was borderline for ‘watch and wait’ or intervention. My consultant was a surgeon and he believed surgery was probably the safest short-term option. We discussed other options that all involved removal or blasting the prostate out of existence. I pursued possible side-effects of incontinence and erectile dis-function. The consultant put them in perspective for me. Fortunately my perspective had had much time to develop whilst lying in hospital on a drip for some days. Under further questioning a now irascible Consultant (probably in a permanent state of overwork and lack of empathy), in answering the question about what he would do if he was me, explained that as he was not my age he could not judge how he would feel about the risk of incontinence or erectile dis-function. I couldn’t quite see why opinions on the risks of incontinence and/or erectile dis-function would vary with age. Perhaps he thought I was loopy already and wouldn’t notice! This man was (and I am sure still is) a technician and certainly had no interest in healing me nor the impact the decision he so craved could effect my life. He could not guarantee no side-effects, even if he used robotic surgery. So basically his only solution was major surgery with a significant likelihood of debilitating side-effects. He is a one-trick pony with his magic knife. The only alternative would be to recommend me to another one-trick pony with his Cyberknife (if I was lucky). I decided to watch and wait but decided I would rather have someone else watching with me. Time to move on to someone with a more balanced opinion. 

I returned to my GP and I asked him to recommend an oncologist. I wanted a consultant who had no axe to grind about the type of treatment. So off I went to another hospital and an eminent oncologist. We happily watched and waited for a couple of years, but not without some dire warnings about what would happen if the cancer broke out of the capsule! Suddenly my PSA spiked to about 11. The consultant told me it was ‘make my mind up time’ about which treatment I preferred. I cannot be sure, but he seemed a little triumphant (maybe me hanging around on his books was mucking up his statistics). 11 didn’t seem that high to me and my views had not changed on incontinence or erectile dis-function. I had the lecture on getting it before it breaks out of the capsule etc. I mentioned HIFU as I had been doing my research. This was not a proper treatment apparently and could we get back to the matter at hand. A compromise was agreed in the short-term and a scan of the prostate was agreed upon. 

Now, you know how sometimes in the dark of night you wake up and worry away at whether you are doing the right thing. Perhaps your wife and friends are right. Don’t take the risk, just get on and do it. Better to be alive in pampers; and anyway who will want sex with a man who has to wear them etc etc. Then you conclude at least things cannot get any worse and you probably have a while yet to make the decision. So, scan done, off to see the consultant, loins girded for some more ‘perspective’. Well do you want to know the good news or the bad news first? OK, I will decide for you. Good news, I have longer to think about treatment on my prostate. Bad news, I have to do something about the 9cm tumor found on my stomach! It is called a ‘gist’.  

The most interesting thing, at this stage, was my oncologist now telling me to get the gist tumor sorted out. When that was done we could get on with the prostate. So, it seems, not quite so urgent as first thought. He recommended an excellent surgeon (colleague) in the same hospital. He made an appointment for me and off I went down a sidetrack for the time-being. Interestingly enough the theme that seems to be developing through my narrative so far continued down this sidetrack. I therefore thought you may like to come with me. I found it instructive. 

Inevitably, my appointment was not for a couple weeks that left me plenty of time for worrying. To my relief the great day came and off I went to see the surgeon to decide what should be done. This was a great triumph of optimism over experience. Apparently, my notes had not arrived but he remembered well the conversation with my oncologist. He put it in ‘perspective’ for me. The ‘gist’ (ha ha) was that this was such a simple operation that it is likely that he would get one of his assistants to do it. Not much was discussed about the nature or positioning of the tumor nor possible side-effects (that were becoming a favourite subject of mine). In fact, without my notes it was impossible to have an objective conversation at all. However, I certainly had enough information to know I didn’t want a learner at the controls when I had the ‘gist’ taken out. 

It did not take much time to realise that I needed to take control of this situation too. Off I went to my GP again. I asked him to find me someone I can trust for the surgery. Off he went and came up with the same name from 3 sources and an oncologist who was expert in sarcomas. (This is what I had as opposed to a more normal carcinoma). This was going to be private, of course, but I did have insurance (although with a large excess). 

The new Prof explained the nature of the tumor and that it is likely that, once removed and tested, would prove to be relatively benign and unlikely to re-occur. The surgeon (surrounded by disciples) explained very clearly to me about how the operation would be done (key hole) and we could do it on the following Saturday morning as he had time available then. I felt absolute confidence as everything was explained clearly and unambiguously to me. I had the operation on Saturday morning, Out of intensive care on the Sunday. 3 days later they chucked me out and on the golf course the following Sunday. Lubbly Jubbly!! 

Ho hum, back to the NHS for the prostate? No way Jose. I had decided, after research, HIFU was for me, but not much available on the NHS. I chose HIFU because, at the time, it looked liked the approach with least collateral damage. What the hell, as my old mum always says, you only get what you pay for’. Off I went to an eminent HIFU consultant. We agreed on a very detailed scan of the prostate (expensive on a special scanner) and had a discussion once the scan was available. Two small tumors were shown up on the scan. They were about 0.3cl each. He concluded that they had probably been there for quite some time and they didn’t show any evidence of progressing very quickly and could be monitored by a regular scan. However, he did remark that they were rather unfortunately positioned. Each one was in close proximity to a different nerve track. Therefore, if he did have to treat me the guarantee of no side-effects would not be possible. Ho Hum. Another scan was done after 6 months and then they were scheduled annually.   

So far, so good, and looking forward to being one of the men who dies with prostate cancer and not of prostate cancer. As my old mum often reminds me less people come out of hospital than go in. I was still happy that I had not panicked after the original diagnosis. No bed wetting and still sexually active! Don’t believe me? Well imagine my surprise to find out I was going to be a father for the first time last year and I am now the proud possessor of the most beautiful 8 month old daughter. What a surprise that even I did not think it was possible. I enjoyed presenting my 92 year old mother with her first full grandchild who thought, on balance, I had probably left it a little late. 

This of course left me with a conundrum. Whilst many may have felt I was being somewhat cavalier with my life, it was my life. I had taken responsibility for my own body and had certainly proved to my own satisfaction that relying on doctors advice alone is not a good life strategy. I know why doctors are not fond of the internet and agree that some people have no common sense when it comes to reading and reacting to all sorts of nonsense. However, I have found it invaluable in challenging complacent doctors. Thank God for Chris Woollams and his ilk for trying to make objective information available to cancer sufferers to help them take control of their own bodies. Chris has been a good mate for many years and was on the other end of the internet or phone throughout. Watch and wait, second opinions, HIFU, localized hyperthermia, clinics, diet, supplements, exercise, no subject was too great. 

I now had a baby at the ripe old age of 63. Perhaps I need to be a little less cavalier. What is the trade-off between XXXXXL pampers and a daughter who needs her dad around? Hmmm. Some thought is necessary. 

Whilst I am on this general subject, I am always interested to see that most people’s music taste eventually get frozen in time. I believe most consultant doctors are like this. So much of their time has been invested in learning their specialism that they have too much invested to switch horses later in life. As a good friend of mine once joked to me ‘ an expert is someone who knows more and more about less and less until, eventually, they know everything about nothing’. Don’t get me wrong I believe all doctors to be well-intentioned human beings. I also believe they do a lot of good. I just think we should not treat them as if they have special powers and be appropriately sceptical.  

Anyway. Early this year, there I am: fat, dumb and happy, and having dinner with a friend. No conclusions about getting my prostate ‘done’ and on the ‘pampers question’. My imminent scan came up in conversation and prostate cancer became the topic of conversation. My friend surprised me by informing me he was off to Germany to have his prostate cancer dealt with by hyperthermia. I had heard of hyperthermia but only of the whole body not specific organs. He is a thorough, intellectual man, and proceeded to describe all his research into the subject. He clearly had enjoyed challenging the specialists (good man) and was clearly going to make his own decision about his own body (even better man). He had even spoken to 4/5 people who had been treated for prostate cancer at the clinic (including one who was treated nearly 20 years ago). His trip was booked and he was off and I was intrigued. Off to the internet again to renew my research. It was fascinating. I won’t repeat it here but I clearly concluded this treatment gave me the best chance of a cure without side-effects. You should go to the web site yourself. My friend returned from his treatment, played some golf and decided that had been a little over-ambitious. However, his PSA had reacted as the clinic had predicted and PSA down to less than 1. He told me he was now peeing like a boy which I assumed didn’t mean all over the bathroom floor. Hmm, what to make of this. 

Off to London for my scan, still fat, dumb and happy but slightly disconcerted at the need to live for a further 21 years to ensure my little ‘Chubby Wubby’ had no boyfriends to disturb her studies into caring for the elderly. 

Scan done. Some changes apparent, but not to my untutored eye. The Consultant recommended a more accurate computer controlled biopsy. I agreed, but I wasn’t thinking straight. (more on this later). Oops T4+T3. One of those little critters was getting ambition. The consultant decided something needed to be done by the autumn. I concurred. He reiterated the unfortunate positioning of the tumors and suggested just treating the more aggressive one. I mentioned hyperthermia. Oh dear; and he isn’t that old. Apparently, it’s something they do in Austria and it is not a ‘proper treatment’.  

I thought long and hard about this. All the new techniques of surgery or radiation seem to be aimed at overcoming the inaccuracy of current methods by using technology to help. Therefore however much ‘perspective’ is given to me now, this tells me the likelihood of side-effects is being reduced but not close to zero. So side-effects are more likely than I am willing to risk. Localized HIFU is not a very good solution for me, due to having two tumors that are unfortunately placed. The advantage HIFU has is that it can be repeated but that is no good for me. So what about more general Hyperthermia on the whole prostate? Why isn’t it generally available in the UK? Why do I have to go to Germany for it? Is it a quack remedy?  Hmmm much to be considered.  

Hyperthermia, if it works, has the benefit that it treats the whole prostate without the necessity of major surgery or radiotherapy. There is no need for technology as it is not about accurate targeting but about treating the whole gland. Also like HIFU it can be repeated. OK, I determine to talk to my friend upon his return. 

He informed me that he was very satisfied with his treatment. It was very gentle and nothing happened that he had not been informed about. That his PSA had dropped to less than 1 in accordance with what he had been told at the clinic. He also let me know that his first check was also negative for PSA (after 3 months I believe). However, as part of the treatment, he is on hormones for 6 months. I believe to ensure any loose cancerous cells around the body, particularly after a biopsy, are given little encouragement to survive. He tells me he has been feeling some side-effects including some loss of concentration. However, he will be off the hormones soon and back to normal. 

So appointment made and off to Germany. This was the break I was looking for. I wanted not to worry about the cancer and not to be debilitated for the rest of my life. The only thing I could lose is some money. But, how much would you pay not to be wearing pampers into old age? 

2. The Diary 

I arrived at Munich airport at around 4.30. The driver was waiting for me. One hour later I arrive at the clinic. Reception is closed but I am soon gathered up and shown to my room and given the layout of the clinic. I am told where to go on Monday morning at 9.00. So far, so good. I am in time for the Sunday evening buffet. This does not bode well. I love my food but ‘this is not food as we know it, Jim.’ My friend stayed at a hotel for the week. I left it too late to get one nearby and so decided to stay at the clinic. Room is fine. Not luxurious but functional. However, I will try the food on Monday but suspect that dining out will be my option of choice. 

I duly reported to reception on the third floor. I filled in the usual consents. Blood samples were taken and a cannula inserted for the week. I was asked to drink copious water whilst waiting in the reception area. The water was for a urine test. (I have never seen so many bottles of mineral water in my life! They were everywhere, including 6 liters in my room). As I was thinking it was about time for me to urinate in the flow machine, a doctor came to get me for a discussion and to put my treatment plan together. I was then told not to pee yet as she was going to do an ultra-sound scan. Fingers crossed, I waited outside the ultra-sound room. A few minutes later, with crossed fingers on both hands, I was invited into the room. Two scans were to be performed on my prostate, one on my lower belly and one in my rectum. It is difficult to cross your legs with a probe up your bum, but I managed. The concentration on not peeing with the probe hard up against my prostate was impressive for a man of little moral fibre. 

It was over and I made a hasty exit to find the nurse that wanted me to pee. Unfortunately, the ‘pee machine” was on another floor! The only reason I didn’t get there before her was because I didn’t know where it was. I made it. Yee Ha! No accidents today. In retrospect, the eventual amount of pee did not seem to warrant the level of distress. Never mind that is why I am here. 

Back at the third floor it is time for my vitamin C. 1.5 hours while it is dripped into my arm. Also I was given some weak antibiotics and anti-inflammatories to take morning and night. Shot back to my room to get my book. Drip finished and off to lunch. Oh dear. I didn’t recognize most of it but I am still alive. Had a nice walk in the very warm autumn sun. Had a snack. Eat an ice cream. Tried to find somewhere to watch the Shalke v’s Chelsea game tomorrow. Will risk dinner tonight.  I am more worried about the food situation. A definite weakness of character. 

Off I went to dinner. Oh no, a schoolboy error! Who would have thought dinner was between 5.30 & 7.00?? OK out for dinner then. Perhaps this was a Freudian slip. The Trattoria Guiseppe across the road looks good. There was a lovely Italian feel to the room. I order the mozzarella and tomato & seafood linguine but German beer. Everything cooked fresh. Two types of mussels wiith the linguine. All’s well that ends well.  A sigh, a sleepy farewell and off to bed. My advice to those who follow this is, no necessity for a hotel but budget for a few meals out. 

Up early for my 9.00 hyperthermia treatment. My neighbour Jim is already prepped and in his seat. No curtains in the room so no dignified introduction. Dropped my track suit bottoms and pants and received a shot in the backside (pain killer & anti-inflammatory). I sat in the chair and the catheter was inserted. That smarts and the end of my penis was stinging. The catheter had a metal plate half way up to divert the radio waves into the prostate. The chair was reclined and the drip attached and there we lay for 3 hours. My friend had told me it was an unpleasant experience. I would describe it as horrible. Jim was telling me it was excrutiating. (although Jim had informed me he was already having a lot of pain peeing, something I had not been experiencing). I didn’t really notice the heat at first but the stinging seemed to be getting more intense as the heat pulsed up. A glimpse at Jim told me he was getting it worse. I could not use my computer and could not concentrate on my book. An age later, I opened my eyes to see I only had another 2.75 hours to go! 

By looking at the dials next to me I could see that the heat was not constant. It made its way to maximum, subsided and then increased to maximum again. After an hour I was beginning to get the sensation of needing a bowel movement. I had already had one that morning so decided that it was a false alarm. Ten minutes later I was not so sure. I was not too keen on adding to Jim’s misery by sitting on a bed-pan next to him. I decided it was probably better than the alternative. But, no bed-pan. I was detached and hobbled off to the toilet clutching my bag of urine, and none too soon as it happened. Re-attachment was no less uncomfortable. Stinging subsided a little heat was now more noticeable and uncomfortable. Jim had some extra painkillers that helped him a little. However, he too needed to hobble off to the toilet. The nurse acted like it was unusual but I wonder (see later). 

Two years later we were detached from the machines. Another shot in the other cheek and packed off to our rooms. I felt like I wanted to pee all the time and had discomfort (from where I guess my prostate is) when sitting and lying down. I decided to miss lunch for two reasons (you can guess but no prizes for a correct answer). The best solution for me was sitting on the toilet, reading my book. No pressure on the prostate and no getting up every 5 minutes. By 5.30 everything was getting better, there was less discomfort from the prostate and less urgency to pee. Now I understand why dinner starts at 5.30. A quick dinner and back to my room. I watched football until internet went down. Ho Hum. Went to sleep and only needed to get up once during the night. 

Off for my vitamin C drip. Just sat on the recliner and caught up with my book and emails. No big deal. Feeling pretty relaxed. Decided to go for a walk around town and did a couple of chores. My friend had asked me to pick up some natural remedies he had run out of that were difficult to get (or very expensive) in Hong Kon where we live. I booked a restaurant for 6pm for Jim, his wife and I. Had a sandwich and a coffee in one of the many bakery/café’s in town and returned to the clinic for a nap. Mid afternoon coffee and cake followed. Jim’s wife not well so we went to restaurant without her. The restaurant was called ‘Genus Art’ and was only five minutes walk around the corner. Jim had the pork and I had the liver. We both loved the food and Jim had a little of my enormous portion of small pancakes with apple sauce. Delicious. Back for a read and a good night’s sleep. I only got up once. 

Up early for my new strategy to prevent the need for bowel movement during treatment. I had breakfast at 7.30 and had plenty of coffee, fruit and any roughage I could get hold of. I returned to my room to make things happen. Eventually I had some success. I went off to the treatment room for 9 (sharp). Jim was already there on his bed. It was the same routine as Tuesday. A shot in the right buttock, a catheter inserted (less sting than Tuesday), the drip was attached and off we went. It was still very uncomfortable. Jim was in a different kind of distress, as his catheter had to be replaced. This meant more discomfort and longer on machine. Also, although Jim also had a strategy for reducing in-treatment bowel movement, it had not worked. Jim’s turn to want to use the toilet first, more delay for Jim. It now became clear my strategy had not worked also. Ho Hum. Three and a half hours later I was off the machine and getting a shot in the left buttock and back to my room. The after-effects were less severe that Tuesday. I had some lunch and napped in my room. I got up for an early dinner and caught up with Jim. He confirmed he also felt much better than Tuesday. His wife is recovered so I went out to book the restaurant for tomorrow and had a cafe latte. Tomorrow I will be back on the vitamin C and will get to meet the great man! Later I did notice the number of pee’s was increasing slightly. 

Onto the vitamin C drip at 9.30 with an appointment to see Dr. Douwes at 12.30. Nothing went to plan and did not catch up with the Doctor until 4.30. It was worth the wait. He informed me that my PSA on arrival was down to 6. My testosterone was already lower than normal. He informed me that he normally prescribed hormones to all his patients who have had biopsies. The reason being that the biopsy had two rather problematic side effects. The first is the wound to which the body reacts with its repair kit that promotes cell growth. The issue being that the process of cell growth works on the cancerous cells as well as the healthy cells. Secondly there is a probability that some individual cancer cells escape into the body. Therefore the hormones would normally suppress the testosterone that gives strength to those cells and to facilitate the bodies own immune system to destroy them. He put the low testosterone down to my stomach that was converting testosterone into oestragen? Go figure.  

He was also taking account of my type-2 diabetes and not put too much strain on my body. So he recommended a one-month shot and six months of a gentle hormone tablet to calm things down. I was to check my PSA after 6 weeks, 3 months and a further 3 months and send him the results. His prognosis, based on his own patient data, was I had an 85% chance of reaching 10 years with no recurrence and 15% chance of a recurrence in 2-5 years. After 10 years he thought I would be pretty much in the clear. Interestingly he believed that where no biopsy’s had been taken there would be a 100% success. 

In addition, he wanted me to stay on Tamsulosin for the time being to keep the prostate relaxed while it repairs itself. He also recommended Coenzyme CQ10 to keep the heart strong because of all the medication I am taking for the diabetes. 

Caught up with Jim and his wife for dinner. We compared notes. They were mightily impressed too. Some other interesting stuff came out from their consultation. However, that is not for me to indulge. 

3 Summary 

I am sitting outside a café in Bad Aibling in the hot autumn sun. I am told they expect the weather to change next week as they start to move into winter. It is a pretty little place, quiet and peaceful. It was well chosen by the good doctor as a place ideal for a clinic. My taxi comes for me in a few hours and I have a little time to ponder my experience here before returning to the hurly burly of Hong Kong. Four years ago I was contemplating my mortality. I was weighing up difficult decisions about how to see my life out. Knowing Chris for some years meant I had had regular input of good perspective on health and how to maintain it. My own philosophy was that I had had a good life and short and happy was preferable to long and miserable. I have witnessed many older people suffering during old age and wondered why. This was not for me. It probably helps that I am not religious. Nevertheless, the only correct result for me is a healthy and active old age otherwise I am not interested.  

So was my trip to Bad Aisling worthwhile. My thoughts are that if you do not have the money beg, borrow or steal to get your prostate treated here. It is a no brainer. Why risk your future health without trying this first! Euro 6,000 versus a risky way forward. 

It is a no brainer!!!  If your PSA goes to an unacceptable level, do not have a biopsy go to Dr Douwes who has other methods of diagnosing prostate cancer and leave it all to him. Not so sure? I will keep you posted on the results of my subsequent PSA tests. And, if I am one of the 15%, I will go back to the good Doctor for advice. If not, Yea Ha! 

I think I would have enjoyed a few hours in the company of Dr. Douwes, perhaps over a good meal. He struck me as someone who had an interesting story to tell and in whose company I would be very comfortable. He had all the science at his fingertips to explain his treatment, but there was something more than that. He came across to me as a healer and someone who could easily live with himself because of the good he was doing. This is a romantic notion perhaps, but one that suits me for now. Even on short acquaintance he seemed to care that I see out a healthy life. It was also in complete contrast to the rather impersonal and technical consultancy I had received in the UK. Have it out and get on with it is not a recipe for a happy life. 

Next 

February 6th 2014: Richard, in Hong Kong, has a PSA reading of 0.3. Brilliant!

 

Richard was told all along that Klinik St Georg believedthey had a 100% cure rate where the patient had had no biopsy. Richard had hada biopsy, one that left him with a bad infection. 

 

Two years on, his orthodox medical team gave him a routinescan and started talking about nodules. Richard consulted with Klink St Georgagain. Although no one seemed to think the nodules were cancer reappearing, adecision was made to be better safe than sorry. Richard underwent a secondround of localised hyperthermia.

 

A year on, he is now completely and utterly clear ofprostate cancer. His PSA is zero.

To Read more about Klinik St George Click Here