Steve's story

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Part 1. The Diagnosis.

Benjamin Franklyn said there are only two things certain in life; death and taxes. Taxes I can vouch for, but death? Like most people, you think you are immortal. I certainly did. That is until the hospital specialist told me I had prostate cancer! As soon as I was told, all sorts of thoughts and emotions went through my head. Shock; this cannot be happening to me, anger; why didn’t they find out a year ago when I first went to them, fear; am I going to die?

 

These and other thoughts went through my mind in a matter of seconds but it seemed a lot longer. Then I recovered my composure and set about asking the questions about how to move forward. Firstly, I was told that 93% of people diagnosed with this cancer die of something else before the cancer would kill them. That cheered me up a little. Then I was told that I would need an MRI scan to determine how advanced the cancer was.

 

After a few weeks, the MRI results showed that it had not progressed beyond the prostate and seminal vesicles (locally advanced). That was good news as it had not reached the lymph nodes. OK, what next? This was where the fun began. The urologist was not able to answer the myriad of questions that I wanted answers to. That would be dealt with by the oncologist and was told that an appointment would be arranged for me to see one at Northampton hospital.

 

In the meantime, I started my own investigations into the disease and the possible treatments. Normally with cancer you get told by the oncologist what treatment they recommend having. With prostate cancer, you are given information on what type of treatments you can have but it was left to me as to which one to choose. If you had one or two alternatives that wouldn’t be so bad, but there are lots of ways you can treat this cancer.

 

I talked to a couple of friends that had been through all this. I learnt a lot from those discussions. I found that both of them were treated at Mount Vernon Cancer Centre and they both said how good it was. They were both pleased with their treatment. That was good enough for me. However, my local hospital was not geared up for me to go there. They only had links with Northampton. In the end I had consultations with both Northampton AND Mount Vernon, but I had to arrange the latter myself, using my own GP as a conduit. This is important. YOU have the right to go to the hospital of your choice so you should do your homework to find out as much as possible about how good that hospital is.

 

The next part tells you which hospital I chose to have treatment and why and what treatment I ended up having.

 

Part 2. The Choice.

This is the second part of my journey with prostate cancer.  Readers of Part 1 will remember that I had got to the stage of which of two hospitals I was going to choose to have the treatment, Northampton or Mount Vernon Cancer Centre.  

 

My urologist, at the time, said I was available for all treatments, to which I replied, "does that mean it is localised to the prostate". (I had done some homework on the different stages and would urge you to do the same if you are at this stage of your journey). The specialist said yes, and I was quite relieved to hear that.  However, it turned out that it had progressed further than that.  It only came to light when I had to use my GP to help me get an appointment with the hospital of my choice.  He copied me the letters he had received from the hospital and it turned out the grading was t3bN0; locally advanced to the seminal vesicles but not to the lymph nodes.  This was still not disastrous but now meant that my choices of treatment were limited.

 

I was hoping for brachytherapy seed implant as I had read good things about it and the treatment was over in one go.  I also spoke to a friend of a friend who had the seeds implanted at Mount Vernon Cancer Centre and this appealed to me.  However, my visit to the Northampton oncologist said I could not have the seeds because my cancer was locally advanced and not contained within the prostate. The only treatment they could give me was external beam radiotherapy.  

 

That was a bit of a blow as I didn't favour that treatment, one reason being that I was 30 miles away and didn't like the idea of driving that distance for seven weeks. BUT, the next day I saw the oncologist at Mount Vernon.  He agreed with the first oncologist that I couldn't have seed implants.  What he did say though, was that I could have HDR Brachytherapy.  This stands for High Dose Rate.  The treatment was basically the same as the other type but instead they don't leave seeds inside you.  They put the radioactive pellet inside the catheters which themselves are inserted into the prostate and left there for a few seconds (you can see how brachytherapy is done by going on to YouTube) and then, unlike the seed implant, the pellet is removed.  I was sold on this method. I made my choice and opted for this treatment.  

 

There was just one last hurdle I had to overcome before they would give me the treatment.  That will have to wait until the next part of my journey (see Part 3 below).

 

Part 3. The Treatment.

Having decided on the hospital and type of treatment, i.e. HDR Brachytherapy, I was told that I could not have the treatment straight away as the cancer was restricting my urine flow. But why should that matter with regard to having the treatment? It is because the side effect of brachytherapy radiotherapy causes the urethra to restrict. If you already have a restriction, there is a danger of the flow being completely shut off following treatment, which is not good.

 

The solution is to have something called a TURP. For the ignorant amongst you, of which I was one, it stands for Trans Urethral Resection of the Prostate, or in layman’s terms it is a re-bore of the urethra which removes the restriction. Fortunately, they don’t use a drill! Instead they use a laser. I was given the option of local or general anaesthetic and opted for the local. The procedure lasted less than an hour and was back in the ward to recover. They keep you in for a day or so to ensure you are able to pass urine ok and then they send you home.

 

After that treatment, I had to wait around 3 months for it to fully heal before I could have the brachy. So, the day came, three months later, for the radiotherapy. I had a general anaesthetic to have the catheters inserted and later in the day was connected up to the ‘after loader’ which delivers the radioactive pellet through a tube into each of the catheters in turn. It is computer controlled which positions the pellet at the right point inside each of the catheters and at no time does the pellet come into contact with the prostate. The whole procedure took less than an hour, which included a scan to ensure the catheters had not moved. There was no pain or discomfort in this procedure. I had two treatments which meant I had to keep the catheters in for 24 hours and had to lie flat on my back for a day and a half and not move. You’re probably thinking at this time ‘what about going for numbers 1 and 2’? Well, they give you something to stop number 2’s and you have a catheter to deal with number 1. (Since I had my procedure they now have reduced the treatment to one dose, so it is even better). As soon as the last session was finished they removed the catheters and wheeled me back to the ward. I stayed in overnight and went home the next day………………………. treatment finished.

 

If I had to go through the whole thing again, would I pick the same method? You betcha! But what about the side effects afterwards? If you are not bored by now, I elaborate on that subject below.  

 

Part 4 - The Side Effects

How does the song go?  “Effects, I’ve had a few, but then again too few to mention”. It wasn’t quite like that as I have had some side effects following my brachytherapy.

 

Before the procedure, I had an interview with the nurse who explained what was to happen and what would happen afterwards. She said “I won’t lie to you; after you’ve had the treatment, you will feel like s*** for the first month and then you will be fine”.  I must admit, that did make me feel nervous but there was no going back at that point.  However, for sure, I had some bruising that caused some discomfort, just enough that I took a few paracetamol to deal with it - but nothing else.  I walked out of the hospital after the two days and my wife commented how well I looked and was surprised to see me in such good spirits.  I had no problems during that first month at all.  So that was a relief.  In fact, I had no problems at all for the next 9 months, other than the need to pee more often.  

 

At that point, I had a real urgency to pee, even though I might have just gone.  When I then did pee, there was a burning sensation and some blood, which did alarm me.  I had a cystoscopy to see if there was a problem with my bladder but that was clear, although there was some scar tissue in the urethra due to the brachytherapy.  When I went back to the oncologist to get his view, I was told that this was not uncommon and that could happen for some time to come.  In effect, it only lasted for about 3 months and I found the best treatment for me was to drink more water more often.  I have not had that problem since and that was nearly 3 years ago now.

 

Unfortunately, that wasn’t the end of my side effects.  After 2 years I found I started to get a weak flow.  Back to the oncologist and he explained that it could be down to the restriction inside the urethra, probably just below the prostate as a result of the radiotherapy even though I had had a TURP (see Part 3 above) before I had the brachy.  The solution he said was to go through a period of ‘self-catheterisation’ using increasing sizes of catheters over a period of around 3 months.  He went on to say that the look on my face when he told me, was the look that most of his patients gave when told what they needed to do!

 

It took a bit of getting used to and it also occasionally caused some bleeding in the urine for a short time after I carried out the procedure.  Strangely, it became something I got used to and it didn’t bother me after a while.

 

So, after nearly three years, I am now virtually free of side effects and my most recent PSA level was 0.08 which was excellent. Personally, I think I made the right choice and I would still have the brachy if I had to make the choice again.  They now have the procedure down to one day and then you go home.  Can’t be bad!