THE YEAR WAS 2000. The millennium was in and I was in a good place. I had a good job, a great wife and children, and a great family life. Jokingly, I had told my wife that after 24 years of marriage, I was going to have an affair and probably grow a ponytail.
In February of 2000, I attended my local GP for my annual DOE Test. When he was conducting the medical examination, he told me that, for men like me who were approaching 50 years of age, a prostate exam was now the norm. An examination of the prostate (Walnut Farm) took place. My doctor informed me that he did not like what he felt. He then took a blood test to confirm PSA and referred me to a brilliant urologist for further tests.
I attended the urologist and was admitted to hospital within two weeks and had a prostate biopsy carried out under general anaesthetic. It was confirmed within a few days I had the ‘dreaded prostate cancer.’
The Black Hole was upon me. When the results came back, the urologist telephoned me and my wife to discuss the results. He recognised the terror. It was a great relief to both my wife and I to chat to, and gain reassurance from my urologist early on.
Dealing with the diagnosis
Three separate appointments for a CT scan, MRI scan and a visit to an oncologist were made on the day and things were going so fast, I thought I was on skates. From the GP to the urologist, from x–rays to the oncologist, it all took less than six weeks.
My first meeting with the oncologist was on 16th March 2000. All methods of prostate cancer treatment were outlined to my wife and I, and a prostate nurse was also allocated to me, whom I could call at any time to discuss my diagnosis. Because of the age I was diagnosed with prostate cancer, I was asked if I would be interested in a clinical trial. I consulted with my wife and GP and decided that if it would be of benefit to future patients diagnosed with prostate cancer, I would do it.
The study trial consisted of the use of hormone treatment prior to radiation and then an evaluation to see if hormonal treatment was of benefit. Hormone treatment had some benefits but what they really wanted to find out was the optimal duration before commencing radiotherapy, which was approximately a period of four to eight months. On 23rd March 2000, I received my prescription for hormonal treatment: eight months of tablets and injections. All the medical staff, from the clinical nurse, to oncologist, to my GP who would administer the injections, were now on board.
I would have to attend St Luke’s on May 18th and be updated on my progress to date. This was done by monthly blood tests, which were submitted to the hospital and, when analysed, I would be told by the prostate nurse how the drugs were performing. As the months went on, my PSA level dropped – good news, as I was receptive to treatment. However, some side effects presented themselves, mainly: breast swelling; loss of sex drive; mood swings and lethargy. At all stages during treatment, the prostate nurse was a phone call away, and always very competent and reassuring.
At some stage, in July or August, as a result of the blood testing, I was taken off my therapy as it was affecting my liver function and I was getting bouts of nausea. In September 2000, I was told when the process of radiation would begin. I was sent a detailed letter from my oncologist outlining what I was about to undergo. Namely, another CT scan, to ensure everything was still OK.
I was measured, X–rayed and a series of small pin prick tattoos were applied to the skin to reference treatment positions and also as a permanent record of the part treated. A treatment planning CT scan was also carried out. After this, the design of the radiation therapy was set in motion and would be completed in about one month. On 10th November 2000, I received a letter from the hospital outlining commencement of the radiation therapy. It was to start on 15th November and consisted of 35 sessions from Monday to Friday.
I was delighted, and felt relieved that I had got this far. The 35 daily sessions flew and on 2nd February 2001, I was discharged from the radiation unit. I was then prescribed my life–long hormonal therapy treatment, which had to be administered by my GP. The treatment effectively switches off testosterone being made.
Thirteen years since diagnosis
Whether I am lucky or unfortunate, it is now 13 years since I was diagnosed with prostate cancer. For the first five years, I had blood tests and oncology appointments on a three monthly basis. I did not have any major reactions to the hormonal treatment. I had occasional ‘hot flushes’, but they eventually ceased at the end of radiation. I did suffer from extreme tiredness and fatigue, but after a lot of bed rest and re–evaluation of lifestyle, this soon passed.
I have now been on the hormone treatment for the last 13 years. Have I suffered or had any side effects? Yes. Hormone treatment has had a very big say in the last 13 years of my life. I have gained a lot of weight, but due to tiredness, I have not got the energy to shift it. I eat a healthy diet but another side effect is muscle weakness due to loss of muscle mass. Hormone therapy can also increase the risk of diabetes and this is another area I worry about.
Also, memory problems can occur. Some men feel that they are not as sharp and that they’re suffering from some memory loss. I, thankfully, do not have those problems and I put this down to being up–to–date with current affairs, having a fishing and gardening hobby and an interest in life in general. Testosterone controls the production of hair. I have lost chest, pubic and body hair. However, I am not bald and I have a healthy beard. Nevertheless, ‘hot wax’ and ‘Brazilians’ mean melting candles and good soccer players to me now!
Osteoporosis is another common side effect of hormone therapy. In September 2005, my oncologist raised the issue with me and had a DEXA scan carried out to ascertain bone density. I showed mild weakness or bone thinning and he recommended three monthly
sessions of injections in St Luke’s for treatment of this. However, he subsequently changed his mind, and in 2006 it was decided I should get this treatment once every year. Side effects are flu–like symptoms and aches or pains in the body joints.
As of yet, I have had no side effects. Maybe it is because I always had a very big calcium intake, milk, cheese and ‘Black Porters’.
Loss of sexual desire is very hard to accept
Sexual function and hormone therapy are completely linked. Hormone therapy ‘kills’ sexual function, sexual desire and generally affects your desire or interest in sex altogether. A lot of books and studies put it quite bluntly as ‘chemical castration’ or ‘chemical neutering’. It is very hard to accept. It plays hell with your emotions, causes mood swings and irritability. You will have feelings of sadness, depression and of being inadequate or a waste of space. Believe me, I have been there and still go there but, thank God, not as often. When you are in a very long relationship, the loss of sex is devastating and mind–numbing.
I know for a fact that I will never enjoy the pleasure and sheer joy of sex again. I reason with myself, I miss it and I get upset. I do kiss, hug and cuddle my wife but I feel I am only doing it out of duty and I also feel that I do not put the same effort into it as when I was sexually active. I love and respect my wife for her loyalty and honesty and the loss and memories I have deprived her of. We had many conversations about sex and intimacy. Her explanation of how glad she is that I am alive and still here is some comfort but I still cannot get my head around it. My wife is my best friend and will always be. I have no desire for sexual contact of any kind. We have never discussed it with any GP or therapist or anyone.
At the end of the day, no–one will restore ‘the spark’ seeing as I am confined to hormone replacement therapy for the rest of my living days. I often wonder if the situation is as stressful for my wife as it is for me. I do not ask her as I feel she may have come to accept it and there is nothing to be gained. The uses of treatments for the loss of function were discussed by my wife and I with the oncologist at the commencement of treatment, and he was quite forthright in informing us that all methods were at least more frustrating than successful.
Men should have an annual check-up
About 3,000 cases of prostate cancer are detected every year. However, men are not known for talking about their health and going to doctors. Information about prostate cancer is now readily available, and support channels are improving all the time. The crucial factor is that, like a car, men should have an annual MOT and have a PSA examination. I have had a life threatening disease for 14 years. It is important for men to understand that early detection is the key. In the long term, the statistics show that three out of four men with prostate cancer won’t die as a result of their cancer. Prostate cancer is common, and the risk increases with age. It appears to be on the increase. But, is that due to doctors getting better at detecting it and insisting on prostate examinations?
When you are diagnosed with prostate cancer, it is as important to understand the disease as it is the treatment. With regard to hormone therapy, there is some evidence that it can increase the risk of other conditions such as cardiovascular disease and diabetes, if it is being taken long–term. In 14 years I have seen a lot of sudden deaths or tragedies and upheaval, something I would never see when first diagnosed.
I have the love and devotion of my wife, family and friends, and I value that very much. I live for the moment. I do not entertain whingers or moaners. Life is for living, helping others and making friends. Laugh, enjoy your hobbies, play music, talk to your God, be happy. There is nothing I could do to prevent getting prostate cancer. I cannot change the fact that I have it. The real cause of what triggers prostate cancer is currently unknown. If I had to deal again with a treatment option would I go a different route? I would go the very same route. Hormone therapy.
I am very lucky. I have had 14 great years without any major side effects. Sure, there were problems and issues along the way. But, with the help of my family, friends and all the medical personnel and latterly, the Prostate Cancer Support Group at East Galway Cancer Support Centre in Brackernagh, Ballinasloe, hopefully I will be around for another 14 years and be able to give back, in some way, the encouragement and help that was given to me, and help others along on their cancer journey.
Jess Clooney is a pseudonym.
This personal story is one of several featured in a new support book for men living with prostate cancer entitled Man to Man: Irish Stories of Hope in Prostate Cancer, Developed by Janssen in association with the Irish Cancer Society.
To embed this post, copy the code below on your site
have your say