Continuing treatment and ongoing assessment

It's been a while since my last post and I am now into the monitoring phase. Since completion of the radiotherapy I have received two more hormone injections (next one due in March). Latest blood test shows less than 0.1 on the PSA blood test which shows the combined treatment is working at the moment. New phrases have now come to the fore like "time to nadir" - nadir being the lowest measure of PSA reached. This is very relevant because with my stage of cancer with lymph node involvement the disease is not considered to be curable but can be slowed down for a time. Eventually the remaining cancer cells develop their own way of making testosterone and at that point the disease has become "hormone refractory" or "castration resistant"
This is deemed to have occurred when PSA shows two consecutive rises or has doubled from its nadir. I will be monitored for PSA every few months to see when this happens and that will then indicate the disease has progressed to its final stage. There is an assumption,based on my PSA, tumour grade and Gleason score (see previous posts) that there will be micro metastases (currently undetectable by scans) that will be present in areas outside the pelvic region and therefore not treated by the radiotherapy. It is these that are being held in check by the hormone treatment. Bad news is that this is only effective on average for 18 months to 2 years.
I have been spending a lot of time on the internet lately trying to work out a prognosis. For my level of disease (T3bN1M0) it will most likely be less than 10 years,possibly 7 but in reality no one can tell you for certain. Keeping up the dairy free and just embarked on a drive to loose 4 stone. My mind will not allow me to think about anything sexual for more than 2 seconds which is a good job I guess LOL

Radiotherapy completed

Finished the course of treatment which I have to say has gone quicker than I thought possible. The daily grind of several hours travelling is over, leaving a strange sensation in my routine - it feels like something is missing. The girls giving the treatment were great as were the ladies on reception so they both picked up a box of chocolates!
I have retired my day bag which accompanied me every trip - (TenaLady,Immodium,bog roll, spare underpants,plastic bags). Main symptoms are that I am very tired (by the afternoon I feel like one of those bunnies in the Duracell ads - the one with the wrong type of battery). Also my number 1's and 2's are all over the place (well not quite literally but nearly!!) and I am now tied to a toilet by a short lead. There is an urgency to go about every hour and then nothing much results, but it is getting me out of bed several times a night, therefore bedtime is often around 19.30.
Appointment with the specialist in around 8 weeks to see how the symptoms are settling down and then it will be a case of checking the PSA level via a blood test to see how the combined treatments are going.

First week of radiotherapy completed

Daily visits to Queen Alexandra hospital, Cosham for my 37 day course of treatment. Travelling over on the hovercraft with a small group of men with similar problems. We get a taxi pickup to and from the hospital which makes things a bit easier and wait for each other in order to travel back togerther as a group. The machine that provides the treatment is called a linear accelerator. There are four at this hospital, costing a million quid each but only enough radiographers to allow three to be in use at any one time. The treatment takes a few minutes and a dose is delivered from four sides by the machine which rotates around the body as you lie on a glass table.No serious side effects yet save for a bit of diahorea and increased frequency of having to get up and go in the night.
6 down 31 to go!!

Simulation prior to radiotherapy starting next week

It was off to Queen Alexandra hospital, Cosham to check that the previous planning visit was correct. I was on a different machine this time, not a CT scanner but the X-ray machine similar to the one that will be used from next week. The tattoos were used to align the machine correctly and it took X-ray pictures of the above and from the side of the pelvic region to ensure that the CT scan and the X-ray machine have calibrated correctly in order that the rays are delivered to the right aresa. No problems and a very quick,painless proccedure apart from the nearly three hour wait. Well thats enough of the preparing - from next Tuesday it will be 37 visits for my daily dose of the rays!!

Impotence,libido and fond memories

Visited Ryde clinic with Sue to see the erectile disfunction nurse. When you have a life threatening disease you tend to become blinkered but it turns out that loads of men have this difficulty ,caused by a variety of illnesses both physical and mental. The nurse was very understanding and compassionate and allowed us time to talk about the situation at length. She had a free sample of Levitra and also wrote out a prescription for Cialis (free if you have cancer or are over 60) - I qualify on both counts! The Viagra had run out but I can try it later if I want. All three work along similar lines in that they help you achieve an erection provided there is manual stimulation. What they cannot do is improve libido. Impotence is defined as the inability to have intercourse whereas libido defines the mental desire for the same. And there lies the rub (if you will pardon the pun). Yes I did obtain a sustainable erection and lovemaking was achieved - but without the libido it was a strange experience. Probably akin to a lady who lies there "thinking of England". To cap it off I now have dry orgasms as either the lack of testosterone or the diseased prostate or both mean that there is no longer any production of seminal fluid.
We will try again of course but the lack of libido is natures feedback mechanism to make sure the brain is in harmony with downstairs.

You are what you eat?

I have never been one to believe in special diets,fads and super foods but the time has come (like a drowning man clutching at straws)to try to take some ownership and self help with this disease. So far my treatments and proposed treatments are having a more damaging effect both physically and mentally than is being caused by the cancer at this stage of its growth. It requires faith and trust that the doctors know what they are doing and so the only thing left for me is my eating and lifestyle habits.
Having just read a book on prostate cancer by Professor Plant in which she advocates dumping dairy I have embarked on a new diet. Plant's theory goes that animals milk is only used while animals are very young and not thereafter. Humans are the only species that continue to drink milk (not even our own) throughout our lives. Milk contains hormones and breast and prostate cancer are hormone sensitive so although there is no proof that cutting out milk products is beneficial a lot of people think it may help so why not?
The other effect should be weight loss. I have been over 17 stone recently and although 6'2" one chart I looked at had me down as obese. Enough of that - so I am now on the PLANT diet. This means no milk butter cheese processed food or empty calories. Out are cakes,biscuits,red meat,crisps (surely not cheese and onion as well - yes I am afraid so!).Less booze, no tea or coffee (except green tea which I have got used to surprisingly quickly. In are extra virgin (wasted on me) olive oil,fruit,salad,most carbs,more fruit and more salad + nuts,beans,pulses,soya,tofu and all that weird flower power stuff.
Will this last?- well it is going OK so far and I have lost a few pounds as a bonus, which is just as well as I had been struggling to get into my works trousers. I had been trying to blame this on the hormone therapy but Sue reckons hiding those crisps has been the reason.
Viagra blog next,thats a promise.

Planning visit for radiotherapy

Over to Quuen Alexandra hospital near Cosham to the Oncolgy Dept. to "plan" the radiotherapy treatment. This is to ensure that the X-rays are targeted to the same area each time.
This was achieved by CT scanner (not scary like the MRI was) but consisting of a doughnut shaped machine only a few feet wide with quite a bit of headroom so not claustrophobic at all.
I was asked to lie down on the table and lower my trousers and underpants below my hips and three marks were drawn on my skin in the pelvic area. The ladies attending then left the room and I was moved back and forth though the machine. All went quiet and I began to suspect things were not quite right. The ladies entered the room and asked me if I felt I needed to go to the toilet. Before attending I had been asked to empty my bladder 1 hour before arrival and to then drink at least 375 mls of water as the scanning and subsequent treatment requires a full bladder. I had done all this plus had been twice for a "number 2". Not enough apparently for my bowel was still full with a stool pressing on and deforming the prostate gland! (I did say this was to be a personal account!)
So I was packed off to the toilet to go again and as the nurse said it was impossible to do the one without the other so there was a further delay while I drank more water and waited for my bladder to refill.
The repeat proceedure went smoothly and the pen marks were replaced with small tattooes that would guide and align the machine during future sessions.
Back in 2 weeks time for a simulation - a dummy run on the machine to make sure everything is set up correctly.
I did say this blog would be about viagra but the appointment with the erectile dysfunction nurse is next week (obviously a lot of demand?) so more on that matter soon.