I'm quite new to all of this.
My wife nagged me into visiting the Doctor because I was having to urinate more and more frequently overnight.
I live in the UK and, after an initial blood test and examination, I was told that I would be referred to a urologist at the local hospital. After a number of tests, prostate cancer was confirmed and I was told that the recommended treatment was a series of Hormone suppression injections and Radiotherapy. I felt that I could only go along with this advice and have agreed to follow this path.
I'm 78, but reasonably fit and still work part-time. I've already had one Hormone injection 3 months ago and I'm due to have the second one next Monday. Meanwhile I've received from the hospital a schedule of 37 appointments for Radiotherapy starting late in November 2015 and ending in January 2016.
I've already noticed that I tend to have sudden episodes of feeling hot and sweaty and that my waistline has expanded although my weight has dropped slightly. I'm told that both are probably side effects of the Hormone injections.
I'm now anxiously waiting to attend my first Radiotherapy appointment...
I've now attended two Planning Scans. The first was a failure because my bladder was not full enough to keep out of the way of the radiation beam. I had been told to start drinking at least 2 litres of water a day before the first Planning Scan and I thought I had been. Another Planning Scan was scheduled for 4 days later and that time I really made sure about the water. It was a success and I now have the tattoo marks to prove it. It was a nuisance to have to travel to the hospital twice so I'd advise anyone in my position to make sure that they are sufficiently hydrated before the Planning Scan.
The same advice also applies to the Radiotherapy sessions which are scheduled to start on November 25th. I'll make sure that I'm thoroughly waterlogged every single day during the 37 Radiotherapy appointments that I'll need to attend. I'll report back once they have started.
I've been attending Radio Therapy sessions for about 4 weeks and I'm now used to the routine. I must arrive at the hospital at least 35 minutes before the nominal appointment time. 30 minutes before the appointment I must empty my bladder and then, within 10 minutes, drink three full plastic cups of water. The object is to ensure that the bladder is full enough to ensure that it does not lie in front of my Prostate. I am also under instructions to drink at least 2 litres of water a day, not including the 3 cups of water once I'm there. I can drink some tea instead – although it has to be de-caffeinated. Alternatively the water can be flavoured with orange squash or something similar. About 5 minutes before the appointment time I'm then called through, go into a small changing room, slip off my trousers and any heavy outer clothing and either put on a hospital gown or a light dressing-gown. I then sit outside with a basket of clothes waiting to be taken into the Treatment Room itself. Once there, the dressing gown is removed and my shoes are replaced by plastic overshoes.
My address and date of birth are then checked before proceeding any further. I then lie down on a hard bed and the Radiographers arrange my body so that it is lined up correctly. They then say goodbye, retreat to a control room and treatment begins. It seems to last for about 5 minutes during which the Linear Accelerator is switched on for about 2 minutes. The machinery stops, the Radiographers return and I then go back to the cubicle to change. I'm usually dressed and ready to leave within within 15 minutes of being called through to change.
I've had a couple of Review Sessions when I was carefully questioned about how well my bowels and bladder were performing. Both of these organs can suffer side-effects. In my case I've been advised to go on a low-fibre diet, with the result that I'm now, if anything, slightly constipated. This is preferable to the the alternative! My bladder seems to be functioning normally.
The radiographers insist that appointments are kept. I felt too ill to drive to the hospital one day due to a heavy cold and phoned in. They suggested that I take a Taxi or get someone else to drive. They were happy to change the appointment time, but insisted that I turn up sometime that evening. I'm rapidly getting used to seeing the same group of patients again and again. Earlier this week one of them was involved in a head-on collision whilst driving to the hospital! He and his wife were taken to Accident and Emergency, given immediate First Aid and he was then transferred to Oncology to receive his scheduled Radiography. After that he was returned to A & E to finish being patched up! Fortunately neither he nor his wife were seriously hurt, but it does illustrate how important it is to receive Radiotherapy according to plan.
Yesterday evening I reached the half-way point (my 18th session). Next week, as a concession, I do get Christmas day off...
Since Christmas I've almost completed Radiotherapy. I have just one more sessions left, next Monday 18th Jan 2016. It's been quite a long haul and I'm glad it's nearly complete.
Over the last three or four weeks I've started to feel very tired, especially towards the end of the day. I now go to bed no later than 9 pm – sometimes at 8:30 when I find it hard to keep my eyes open. The tiredness is a well-known side-effect of Radiotherapy. I now always get the local bus to and from the hospital rather than use the car because, especially at the end of the afternoon, I feel so tired that I don't think I'm fit to drive. I'm lucky: I live in the centre of Norwich only five minutes walk to the bus stop. There is an excellent service to and from the hospital that runs every 10 to 15 minutes during the week. Many prostate cancer patients have to travel up to 50 miles each way for their appointments and I notice that they are always accompanied by relatives or friends who do the driving.
My bowels are still more or less under control, aided by 2 mg Loperamide capsules prescribed by the hospital. These are usually prescribed for travelers returning from exotic locations with severe stomach bugs. In my case I've been told not take more than one a day. I've found that one every two or three days seems to work best for me.
Yesterday I had my Completion Review and was given advice about the period immediately following the end of Radiotherapy. I've been recommended to continue showering every day for two weeks using Baby Lotion and to continue to rub E45 cream on the area exposed to radiation to prevent reddening and soreness of the skin. I've not had either problem, thank goodness. In other words go through the same routine that I follow at the moment before Radiotherapy. I've also been advised to slowly change my diet back from low fibre to normal over 2-3 weeks. The local cancer charity, Big C, has also provided me with some very useful advice about obtaining travel insurance. It seems that many travel insurance insurance companies either simply refuse to provide medical cover or regard cancer and ex-cancer patients as cash cows. My insurance broker is currently checking what is available at a reasonable price.
Over the past weeks I've got to know many other prostate cancer patients and discovered that their treatment seems to be individually tailored. For example, many have to continue hormone treatment for 2-3 years after Radiotherapy. I need only two more injections spread over 6 months. There are also many other differences, for example some patients are required to self-administer an enema before each Radiotherapy session
I've started to meet patients on the new 20 week path. I read about this before my own 37 week treatment started. They get 20 sessions, each with a higher radiation dose. Research has shown that patients can cope with this and that the success rate is slightly higher than the old 37-week treatment. I'm very envious. Obviously it costs less and the NHS can treat more patients so it's a win-win situation.
I've been booked to see the doctor at the hospital after another 8 weeks or so with a PSA blood test the week before. Here's hoping for good news...
I visited the hospital just over two weeks ago for my first post-treatment consultation some seven weeks after the final Radiotherapy session and received some good news. I was told that the latest blood test showed my PSA level down to 0.6 and that, while it didn't prove that the cancer had completely gone, was a very hopeful indication. I was able to tell the consultant that the tiredness had vanished and my bowels were much better behaved although still not completely back to normal.
I will have one more hormone injection at the beginning of May and, every six months for the next two years, will meet the consultant after a PSA blood test. Assuming all goes well I will then be able to consider myself cured.
It's now simply a matter of waiting patiently for what I hope will be a very satisfactory outcome.
Over a year from ending Radiotherapy I am still working and feel very well. In early May I have a hospital appointment. They will have access to a PSA blood test, the blood being collected by a nurse at my local surgery two weeks earlier.
I have been told that if my PSA is still low then, there will be no need for further hospital visits.
I have decided to stop working this year. I will be 80 in June and I think I should not return to continue teaching Engineering in September. That has nothing to do with the (hopefully cured) cancer!
Watch this space!
I recently had another PSA blood test. This gave a reading of 0.5 - up on the readings of 0.2 that I have been getting since Radiotherapy treatment ended, however the hospital nurse told me that she did not need to see me again.
My own doctor will, in future, check my PSA level every 6 months for the next 5 years and annually after that providing that my PSA reading does not exceed 2.1. If that does happen I will be treated by hormone suppression injections. There is no question of another series of Radiotherapy treatments - the radiation dose that I have already received is about as much as the human body can withstand.
So, fingers crossed, I have finished with prostate cancer. I'll keep in touch...
David's e-mail address is: dmpayne100 AT hotmail.com (replace "AT" with "@")