Alex's story

In her own words, Alex shares her experience of prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. after her husband, Andy was diagnosed at the age of 63. Despite their grief and shock, Alex ensured that they were as well-informed as they could possibly be before they made decisions about his treatment.

Stopping at every loo on the ten-hour drive down to Brittany

He tried to prepare me. He had said, 'You know what they are testing me for?' I'd dismissed it all. More worried about my own gall bladderThe organ that stores urine. operation, than Andy's inability to pee. His stopping at every loo on the ten-hour drive down to Brittany. His constant night visits to the loo, trying to squeeze some drops out. I'd just filed it away along with all the other things he coped with. His sleep apnoea, his cracked heels, his atrial fibrillationA common abnormal heart rhythm causing a rapid, irregular pulse and failure of the upper chambers of the heart (atria) to pump properly. Abbreviated to AF., he took steps to rectify all these. We always had a breathing pump with us to even up his breathing for sleeping. Various foot files to get rid of the dead skin and latest foot cream (that time from Australia), medicines for the atrial fibrillationA common abnormal heart rhythm causing a rapid, irregular pulse and failure of the upper chambers of the heart (atria) to pump properly. Abbreviated to AF.. I just complained that the latest pills to help the peeing problem smelt awful - just like wet cardboard - and just didn't seem to be working. Yet I did suddenly think, 'Things aren't right, how long can this carry on; what exactly is a DREDigital rectal examination, physical examination that involves inserting a finger into the patient’s rectum, their back passage.?'

The young doctor sitting opposite us in the Rotterdam hospital said: 'It's bad news. All cores are positive - some 5, some 3, giving you a GleasonA system used to assess the extent of abnormality of prostate cancer cells. of 8. This and your PSA of 16 tells us you have an aggressive prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body.. I want you to have a bone scanAn imaging test that uses radioactive substances to evaluate the whole musculoskeletal system. and then an MRIAn abbreviation for magnetic resonance imaging, a technique for imaging the body that uses electromagnetic waves and a strong magnetic field..' All I remember is gasping - Andy thanking the doc, for being so courageous in what could not have been an easy task for him. Me asking: 'What do we do next?' Him saying: 'Go home and weep.'
 Tests and diagnosis

We stood with the nurse while she efficiently made the appointments, the bone scanAn imaging test that uses radioactive substances to evaluate the whole musculoskeletal system. at another hospital on the Monday, the MRIAn abbreviation for magnetic resonance imaging, a technique for imaging the body that uses electromagnetic waves and a strong magnetic field. the following week. Then another appointment with the young doc a week after for the results of those tests. Then outside we just walked. Faces suddenly solid. I can remember thinking, 'Everything is over. Our future is gone.'

Knowledge gives you the strength needed to make very difficult decisions

Looking back, two years on, what can I say? First it's important to know that prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. is not just one disease but can be divided into four. The initial point at which the disease is diagnosed is measured by the 'T score'. The T score determines what treatment options you will be offered. A T1 diagnosisThe process of determining which condition a patient may have. is the start of the disease. A man can easily be treated and survive. A T2 means that the cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. has to be aggressively treated but is still 'curable'. A T3 means the cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. has escaped the prostate and is likely to metastasise to the bones. It is likely that the disease will continue but treatment is aimed at prolonging life. A T4 means the cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. has already spread to the bones and there is no chance of survival. Treatment is aimed at palliative care, or making death as painless as possible. The big thing to remember is that your life has not ended, you are not actually looking at death in the face - not yet - survival times are getting longer. Outlook

How do I know all this? How can I be so matter-of-fact? How can I not choke up with tears? Its because once a prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. diagnosisThe process of determining which condition a patient may have. is given, it is important to get as much information as possible. Knowledge gives you the strength needed to make very difficult decisions. I had to say to myself that crying was getting in the way of what I needed to know and do. You really need to know what type of treatments are available and preferred. Radical prostatectomy, image-guided radiation, hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy, high intensity focused radiotherapy The treatment of disease using radiation.(HIFUAn abbreviation for high intensity focused ultrasound, a relatively new method for treating cancer using focused ultrasound waves.), brachytherapyA type of radiotherapy where radioactive pellets or wires are inserted into the tumour., cryotherapyA therapy that destroys unwanted cells or tissue by freezing it., side effects, quality of life - all these new words and phrases - you need to know what they mean and within a fairly small time frame. I spent hours, days, weeks, just finding out everything I could on the internet and spoke to anyone who I thought could help.

In Rotterdam, it's easier not always having to to drive, so the following Monday found us on the tram making our way to a new hospital looking for the nuclear medicine department for Andy's bone scanAn imaging test that uses radioactive substances to evaluate the whole musculoskeletal system.. Cheerful receptionist, usual bowl of sweeties on the desk, dye injected by Dutch lady recently returned from Canada. A long two-hour wait followed during which we sort of hung around the gardens near the hospital car park, Andy desperate for a pee again, yet having to drink a litre of water before having the bone scanAn imaging test that uses radioactive substances to evaluate the whole musculoskeletal system.. Back again to the small hospital near our home to get an MRIAn abbreviation for magnetic resonance imaging, a technique for imaging the body that uses electromagnetic waves and a strong magnetic field. scan. Small problem with a spot on the liverA large abdominal organ that has many important roles including the production of bile and clotting factors, detoxification, and the metabolism of proteins, carbohydrates and fats., so an ultrasound also taken at the same time, determining not too much of a problem. Then back the following week to face the young urologist again.

'Its good news' he says 'the cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. is contained within the prostate, you can be cured'. 'Sorry, did you say cured?' 'Oh yes. All our treatment is aimed at cure'. And then I kissed him!

We had a chance. The fight began

Andy's GleasonA system used to assess the extent of abnormality of prostate cancer cells. score of 8 meant his prostate was pretty much full of cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body., but his PSA, the bloodA fluid that transports oxygen and other substances through the body, made up of blood cells suspended in a liquid. test used to measure the number of prostate-specific antigens the prostate is producing, was 16, so with the clear results from the bone and MRIAn abbreviation for magnetic resonance imaging, a technique for imaging the body that uses electromagnetic waves and a strong magnetic field. scans his prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. was put at a T2c, which is at the very top end of the table for 'curability'. We had a chance. The fight began.

We could choose between surgery, a radical prostactectomy, or radiation treatment. I'm using 'we' when of course it was Andy who had the cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body., had to undergo the treatment, had the side effects. Yet as most couples find, both appear to have to face prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body.. Together we made the decisions. It was too late for brachytherapyA type of radiotherapy where radioactive pellets or wires are inserted into the tumour. or HIFUAn abbreviation for high intensity focused ultrasound, a relatively new method for treating cancer using focused ultrasound waves., reserved for those with an earlier diagnosisThe process of determining which condition a patient may have.. We were told that 'nerveBundle of fibres that carries information in the form of electrical impulses.-sparing' surgery would not be possible. Incontinence possible, erectile dysfunction probable. Survival chances equal. We went to see the radiation oncologist. Choosing treatments

Why would he choose radiation over surgery? Andy could be treated with the very latest image-guided radiation beams. This gives pinpoint accuracy and minimal side effects. We went to see our lovely Spanish doctor who had originally sent Andy to the hospital for tests. What did she think? Given that Rotterdam had the latest state-of-the-art equipment to treat prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body., she thought radiation. So did we. Decision made, it was time to take action. He was to have 72 guys of image-guided radiation therapy (IGRT) given in 36 sessions over seven weeks. Treatment would end the week before Christmas 2006.

Back to the urologist. Andy's urethra was being squeezed so much by the prostate swollen by the cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. that having a pee was almost impossible. He was to have a sub-pubic catheterA tube used either to drain fluid from the body or to introduce fluid into the body. fitted before he started radiation treatment. This means a hole is cut in the abdomenThe part of the body that contains the stomach, intestines, liver, gallbladder and other organs. and the bladderThe organ that stores urine. empties directly by means of a tube and bag strapped to your leg. As Andy lay on the couch uncomfortable with the two litres of water he had just been made to drink, the older urologist with blade poised asked 'why am I doing this? Has anyone suggested self-catheterisation?' Running upstairs to see the 'self-catheterisation' lady expert, Andy asked if she could make the explanation very quick as he was just 'busting'. From that moment on he has been the biggest fan of self-catheterisation. Returning, the older urologist says: 'Now I need to castrate you.' I guess some afternoons just turn out like that.

Castration for prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. actually means the chemical suppression of testosterone production. Euphemistically known as hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy. There are pills and implants. In Andy's case, he had to have three monthly implants for 12 months used as an 'adjuvant' treatment to the radiation. The reason for this was that prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. cells feed off testosterone. Radiation treatment damages the cells within the prostate. Healthy cells are able to reproduce themselves, but cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. cells die off, especially since there is a lack of testosterone. It's a two-pronged attack on the cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body..

Little by little, it appears we do now have a future to look forward to

Watching while Andy went through the treatment, what happened? I would say it was a gradual sapping of his energy. He worked while undergoing IGRT. Catching the tram and then walking the rest of the way to the hospital. Sometimes, I went with him. Towards the end of the treatment, just being there for him as it became harder to will himself there. He was so tired. Maybe it was the effect of the radiation, with his body working hard to remake the damaged cells or maybe the side-effect of the hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy. He would collapse into bed when he got home from work and would then drag himself out again in the morning. For Andy, the side effects were significant. His knees ached, his limbs lost muscleTissue made up of cells that can contract to bring about movement.. He would come shopping with me but suddenly say he had to get home. I had to realise he was not being the usual awkward male shopper. He really could not go on, his legs were hurting so much. So we would get home with him exhausted. He just did not have the stamina for a 'normal' life of doing things such as a trip to the cinema. We had been used to going home to the UK each month for a weekend, but that was just unthinkable. Andy was emotional. Quite rightly so if you don't know whether the treatment is going to work, if you are going to live or die. But I would have to be careful what I said to him. I teased him about his legs becoming like a sparrow's and he was distraught. I was definitely the evil bitch. He would get up early and have the blackest of depressions. Up and down. But mostly so loving. He joked that maybe he preferred not being so full of male aggression.

Check-ups were every three months, alternating between the radiation oncologist and the urologist. PSA and other bloodA fluid that transports oxygen and other substances through the body, made up of blood cells suspended in a liquid. tests were taken a week before a consultancy visit and so the two weeks leading up to the date were always anxious. A 'what if' time. Then a year after he started treatment, Andy was told that he was in 'full remission'. The nearest the docs say to 'cure'. Followed three months later by the last of the hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. implants. Now his aim is to just get better from the effects of the treatment. It could be upwards of two years before his testosterone begins to function anywhere near 'normal'.

Little by little, it appears we do now have a future to look forward to.