I never could PEE well
Alan Dainton
How I envied those whose strong jet streams alone signalled their presence in the public urinal. I'm sure, as a boy, I could pee as high up the wall as the best of them, but somewhere along the line I lost the ability to 'make a splash'. As my teenage alcohol habits took hold I began to notice a peculiarity, an enigma - whatever was imbibed magically doubled in volume by the time it reached the porcelain. As with many people, drinking took place in the evening, with increased consumption at the weekend, so getting up to go to the loo at least once and maybe twice a night became a lifelong habit. My self-diagnosis was that I had a small, weak bladder.
Approximately ten years ago, another problem emerged. Quite often, although 'busting' to go, I would often find myself standing there for ten minutes before I could summon up the flow. Concentrating on resource_images of streams, rivers, waterfalls, and aided by a running tap, I would eventually find relief. I settled into this pattern for a number of years and accepted it as 'normal for me' until, approaching 50, I read that these symptoms could be indicative of two conditions - either Benign Prostatic Hyperplasia (BPH) or Prostate Cancer.
The walnut-sized prostate gland surrounds the upper part of the urethra - the tube which carries urine and semen through the penis - and its role is to produce some of the fluid that makes up semen. As men age the gland can enlarge, resulting in BPH which creates pressure on the urethra causing a slow down in flow, discomfort and difficulty in passing urine. With cancer, cells within the prostate begin to mutiply in an uncontrolled manner, again causing pressure on the urethra and similar symptoms. However, these cells are not always contained within the prostate - and if they break through to surrounding tissue they can travel throughout the body, often into the bones.
I took my mild concerns to my doctor, whose response was to give me a Digital Rectal Examination (DRE). Is this one reason why many men are hesitant about getting their symptoms checked-out? The DRE, performed by a gloved finger, permits the doctor to feel for any irregularities on the surface of the prostate. If cancer is present it may feel hard and knobbly, whereas with BPH it is usually enlarged, firm and smooth. Sometimes, however, the prostate may feel normal, even when cancer cells are present. Anyway, I was satisfied with his diagnosis - that my symptoms were entirely due to 'middle age' and that I had no cause for concern.
Last November my life situation changed radically (that's a different story) and I decided to spend some time travelling. A round-the-world ticket, so maybe I should check things out once more before embarkation - especially as my nocturnal visits to the loo had increased to three or four times a night. Happily, this time the doctor bypassed the DRE and suggested a PSA test. A blood sample is taken to check for a substance called Prostate Specific Antigen, a protein produced by the prostate and normally found in the blood. If this count is higher than it should be then, probably, the prostate is bigger than it should be, but this could be due to other conditions - BPH, infection, recent bladder surgery or even prostatic massage! In up to 30% of men with cancer the PSA level is normal, i.e. 3-4 (nanogrammes per millilitre of blood). Levels between 4 and 10 suggest a possibility of cancer and a biopsy may be recommended. Levels of 10+ should be investigated. Mine was 12. I was referred to a surgeon who began by giving my another DRE. His skilful probing revealed a hard lump on the outer surface of the prostate and yes, it was almost certainly CANCER. I spent the next 15 minutes in a dry-mouthed daze as he went through next steps, options, as well as my score on the Gleason Scale. This numerically grades tumours - a low grade is 2-4, slow growing, less likely to spread; 5-7 is moderate grade and 8-10 high grade, more likely to spread. Prostate cancer is generally divided into four stages - T1 is a tumour within the prostate, too small for DRE to identify and often no symptoms, but detectable through a PSA test. T2 is large enough to be felt by DRE, but again often without symptoms. T3-4 means cancer has invaded surrounding tissue, known as 'locally advanced prostate cancer'. If the lymph nodes, bones or other parts are affected this is secondary, or metastasic cancer.
So my score was 7T2, and with a PSA of 12 I had just cause to panic! At the time I was not taking in the details - I was only aware of 'that word' resounding through my consciousness. Professionally familiar with this situation, the surgeon took as long as I needed and wanted to give explanations and answer questions. Questions! My head was full of them - family, friends, implications, travel plans, TIME - how long have I got? That is the only one I can remember asking, and the answer - an educated estimate - three years, five at best.
This was not part of my plan.
His conclusions were based on the PSA level, combined with the results of my Trans-rectal Ultrasound Scan. As the name implies, a probe is inserted via the rectum to produce a sonar image of the prostate. At the same time small samples are taken from the gland. Thankfully, this was carried out under a general anaesthetic and I experienced no pain or discomfort afterwards.
So now I returned home to ponder my options, armed with booklets, phone numbers of the various cancer charities and as much information as I could gather to arrive at a good decision, for me. I contacted several men of similar age to discuss their treatment, decisions and after-effects - and soon discovered that everyone's experiences are almost unique to them.
Still confused, when I again met the consultant he allowed me further time to consider, setting up meetings with Oncologists and Radiologists. As a comparatively young man with this condition, I had two main choices - either a Radical Prostatectomy (surgery), or Radiotherapy. Frankly, I was scared of the invasive implications of surgery, in which the entire prostate gland is removed. This is a major operation, followed by a week in hospital and, maybe, two months or more recovery time. It carries a 70% risk of impotence and a 40% risk of short term incontinence (20% long term), and a 10% chance of bowel problems. In short, the pain is all 'up front' and it gets better. Conversely, with Conformal Radiotherapy the treatment is entirely pain free, but the side effects increase as time goes on, especially with up to 7.5 weeks of daily sessions. This does cause bladder and bowel problems, fatigue and possible long term damage to the rectum and bladder (2-5%), with a 30% risk of impotence.
At my age of 55, I feared impotence and incontinence more than anything else. Surgery does not guarantee survival, as there is always a chance that the cancer might have already spread to other parts. However, if surgery does fail there is the back-up option of radiotherapy, but if radiotherapy is the first choice surgery ceases to be an option because of the effect it has on the internal tissues. Finally, as success rates appeared to be about equal, I opted for Radiotherapy. Then, a bombshell - I was called back to the hospital and informed that a re-examination of my test results suggested that the cancer had spread beyond the prostate. If this was the case surgery would no longer be an option.
The only way to confirm this possibility meant having a Lymphadomectomy - an operation on the lymph glands, taking several samples (biopsies) from the stomach area. This was combined with a cystoscopy (examination of the bladder via the penis). This was a set-back for me, but I still had no feeling of pain or illness, so it was easy for me still to feel fairly confident, despite imagined twinges that 'things were happening' inside.
After a further 3 week interval I was eventually summoned to Bristol for this operation and following two days in hospital, blood tests, form-filling, no food etc., I was sent home again. There was an emergency in the operating theatre and I could not be fitted in. Another two weeks passed before I was re-admitted, and another week of waiting for the results. This operation did affect me and I felt extreme discomfort for a week afterwards. Fortunately, results revealed that the cancer was still contained in the prostate. So, finally it was settled - Radiotherapy.
During this period of 3-4 months, I saw eight different consultants, doctors, registrars - never the same one twice - due to botched appointments, holidays, emergencies etc. After all this time I still had no clear idea of who was in charge. My friends and family were very supportive during this period, but I imagined that everyone was appraising my health, treating me with sympathy, and I almost felt guilty that I neither looked nor felt ill. But, I discovered my real friends.
A source of further confusion was the Internet - pages and pages of information, particularly on American sites. One article, by an eminent team of doctors, concluded that (1) there is no clear proof that treatment cures prostate cancer, (2) there is no clear proof that treatment extends life expectancy, (3) more men die with prostate cancer than because of it. There is even a site featuring a rosy-cheeked, white haired chap of 78 who turned down all treatment when he was diagnosed at 66, and has not suffered a single day's illness. There is still much to learn, particularly in the differences between the slow-growing and virulent types of prostate cancer. After finally realising that more information meant more confusion, I determined to be positive and just 'go with the flow'.
Well, having opted for Radiotherapy as a weekly in-patient (home weekends) at the Bristol Oncology Centre, I first had to take a course of hormones. Prostate cancer thrives on testosterone, but the hormones (Oestrogen) block it from entering the cancer cells and has the desired effect of shrinking the tumour, thus making an easier, smaller target for the conformal radiotherapy. This, too, has side effects -which could be any or all of: sweating, hot flushes, loss of libido and impotence. I suffered the last two, but these eased when I finished the course. However, my breasts began to grow and my nipples became sore and permanently erect. Fortunately, I did not reach the quiche-baking, pink bedlinen stage, and with a short burst of radio beams to my pubescent breasts the enlargement was halted, but not without the consequence that I now have two rather pink 10cm diameter circles around each breast, very aureole-like. The doctor assures me that this will fade, although it has now been six months since that particular treatment.
After the three month hormone course I was ready to register into the hostel, along with seventeen other patients of varying ages, and all with different cancers, many of them requiring the added burden of chemotherapy. The hostel, on the top floor of the Centre, was a happy and positive place, and very supportive - three meals a day, a roof-terrace, own room, library - and with 10 minutes treatment a day, plenty of time to explore Bristol.
The treatment itself involved lying on my back under a machine. Lasers are lined up with tiny tattoo marks on my outer thighs and the base of my stomach, and then the zapping starts. A burst from each side and one from above for a total of ten minutes each day, five days a week for seven and a half weeks. It is totally painless - a buzzing sound is the only indication that anything is happening.
I was very impressed with the radiographers and hospital staff, who are totally dedicated and treat 250 people each day. No one I met in the hostel during that time seemed very depressed about their situation. We all agreed that cancer is not necessarily a 'big deal' and all are very hopeful for their futures, even if it is just to enjoy the rest of their lives.
Now I am at home, three weeks have passed since my treatment ended. I still feel fine, am planning a world trip - my late gap year - and at this moment am hopefully anticipating an improvement in my libido and impotence, with help from a certain tablet...
I still can't pee very well.
