My father died from prostate cancer in 1989 at 67. Back then, there was no PSA test, so by the time many were diagnosed, They were stage four, which is advanced and aggressive. That was the position with my Dad. His death had a very significant effect on me and as a result, I was very much aware of Prostate Cancer and the PSA blood test and started proactively having a PSA test annually when I got into my 40’s. My mother also died from cancer when she was in her 80’s.
I was diagnosed at 55. I would say looking back, I had symptoms, but I didn’t really realize they were symptoms of Prostate Cancer. Certainly, I can point to changes in my bladder function. In the months before the diagnosis, I couldn’t hold urine for as long as I used too. I drove to Dublin a lot then and whereas before I was always able to get to Dublin without needing a toilet, now I had to stop. I also noticed that I couldn’t empty it fully. I discussed it with my two older brothers and one of them sort of dismissed it. He said, “that’s just growing older.” That happens to men.” I had a few other minor symptoms which unfortunately didn’t really feel were important at the time.
When I was diagnosed, my PSA level hadn’t increased by much, it was only at four and for the type of Prostate Cancer that I was diagnosed with, it should have been many times that level. My G.P. only got concerned because within twelve months it had jumped from three to four. It was only because I was proactively getting the PSA tests on a regular basis that she was able to notice the increase. If I had gone in at 55 to a doctor’s office for the first time and had the PSA test done, they might not have been terribly concerned, but because it had jumped by one in twelve months, my G.P. was. After the first test the procedure is to repeat it in six weeks if you got an elevated level.When I got the second test result it confirmed the increase, I was then dispatched off to see a urologist.
Before that, I’d done a little bit of research and I had realized that in some countries, as a standard approach to prostate cancer, they do an MRI of the prostate in addition to doing the blood tests and rather than wait on the public system to schedule me as when I inquired, I was told that there was a three to four month wait for an MRI in the public system, I got my GP to organize one for me. We are fortunate in this country to a certain extent, because that MRI only cost €200. I’ve spoken to men on American blogs and in other countries around world where MRIs can cost a couple of grand and would be way outside of the reach of the average person.
When that MRI came back, it was clear I had prostate cancer. The cancer had broken through the cap of the prostate already and had invaded my lymph nodes, and the particular person that did the MRI was able to say that it was in at least one lymph node, surgery confirmed it was in two and within twelve months it was in a third.
I was referred to what they call a rapid access public clinic here in University Hospital Waterford. An absolutely brilliant service as I was seen very quickly. The urologist arranged then for me to have a bone scan and targeted biopsy to establish it was cancer and if it had spread to other parts of my body. They confirmed it was aggressive cancer and Incurable. I was notified that it was outside the prostate and was in the lymphatic system, but it was confined to the abdominal area.
So, the question then was, what treatment are you going to have? I suppose my reaction, which I don’t think is untypical of people, was let’s get this out of me as fast as possible. Just go in there and get rid of it.
I had a vague understanding that there was going to be permanent side effects, that there possibly might be incontinence, but generally what they’ll tell you is, if you work on that and you do Kegel exercises afterwards, you can probably get that back under control. They don’t talk too much about the effects on a person’s sex life including erectile dysfunction and that is very important to many men and their partners.
So, when you’re told that there’s a multidisciplinary team that has agreed the best chance for you is surgery, then you go ahead, and you have surgery.
Initially I thought it went well, but however, a month after surgery I ended up back in hospital with sepsis. I had a leakage of lymphatic fluid in two different parts of my abdomen. Both got infected which led to the development of clots in my right leg and both lungs (Pulmonary Emboli).
You can look at things and say you were lucky, or you were unlucky. I am lucky to have survived it, having been well looked after in C.U.H. However, I was unlucky to get sepsis DVT and PE in the first place and that has affected the attitude of various consultants. It has put them off trying to repair some of the damage which would improve my quality of life, as it colors their attitude.
As a gay man who had lived through the 80s and 90s when we had the HIV and the AIDS pandemic, I feel lucky to have survived it when many did not.
I’ve found that there is a very significant difference between straight support groups and LGBT+ groups. I think generally people who are LGBT+ have already come out. They’re more inclined to talk about the issues that are bothering them, and I find that when you’re participating in an LGBT+ group, people aren’t concerned about raising things like incontinence or erectile dysfunction. I was very fortunate to find an LGBT+ Prostate Cancer group based in the U.K. and attend once a month online.
When I was younger and living in Ireland where homosexuality was illegal, it took me quite some time to come out. To come to terms with my sexual orientation, to be happy and have a healthy attitude to it. A friend said to me, don’t tell anyone you know you have Cancer, as people will start avoiding you, but I couldn’t live in a Cancer closet. That wasn’t the way for me to deal with it. I remember quite clearly the comfort I got when I was younger finding people like me and knowing I wasn’t alone. You get comfort and support from being around people like yourself. Post prostate surgery I wanted to try and find other men who like me, were also on the Prostate Cancer train and be able to chat with them and ask questions.
Something that really disturbed me was that I felt that my masculinity was being taken away from me by Cancer. Having come to terms in my 20s with being a gay man my masculinity is very important to me. I believe it is important to all men. I wanted to meet with a group of men who also had Prostate Cancer, that I could talk this through with. I wanted to talk to men who have been on the journey already and maybe were a year or two down the road and could tell me what probable future I was facing but the reality is that there aren’t really any Prostate Cancer support groups in Ireland.
After I was diagnosed with Cancer, I was contacted by a friend who was diagnosed as HIV positive as in his early 20s a couple of decades ago. He reached out to give me support from a different perspective. He said, look, it’s not necessarily going to kill you, or if it is, it’s not going to kill you very quickly. Yes, they’ve told you there’s no cure, but at the same time there are treatments and you’re at an earlier stage of the journey. I tend to look at Aggressive Prostate Cancer as a train that we’re all on and some guys get to leave the train and stay in station for a while, but the chances are you end up back on the train again and going on to the next station. Many people are further along their journey than me. My Friend drew parallels, with being HIV positive and having cancer and he said don’t do what I did. When I was diagnosed as being HIV positive, I thought my life was over and I approached everything from that perspective, don’t do that. Continue to live as best you can. I think that was a great piece of advice too and I try to follow it every day.
I believe we need to provide help for men who can’t talk about Cancer and fall into depression. We need to take the stigma out of Prostate cancer. You can say the word Cancer and the house is not going to fall down. If we can all do something that helps to reach out to one person that’s not doing very well, doesn’t have a lot of support, maybe doesn’t have a partner, maybe doesn’t have a supportive family which a lot of LGBT+ people wouldn’t necessarily have. That would be a huge step forward.
I haven’t been able to work since my diagnosis. The effects of the treatment have left me with fatigue and brain fog, Incontinent with overactive bladder and E.D. I feel like I’m a shadow of the person that I was and am often exhausted by midday. I had my first cancer re-occurrence within the first year which was treated with stereotactic radiotherapy. I am shortly due to have Botox therapy for overactive bladder symptoms. I have been diagnosed with my second re-occurrence and have been referred for a PSMA scan to Cork University Hospital to try to find where the cancer is growing and enable a more effective treatment plan to be developed.
You know, in the scheme of things I’ve been both lucky and unlucky. I choose to take the view that I’ve been lucky. Five years later I’m still here, I’m still able to fight it, I’m able to reasonably deal with it and on bad days my dog Percy keeps me going and gets me out of the house. I’ve absolutely had support along the way. I’ve had therapy. I have an incredibly supportive family, friends, employer and colleagues from work and along the way I found a very supportive online Cancer community. I’m very, very glad that I reached out, that I went looking for that support, because it helps me enormously.
Bill is an ambassador for our 2023 Stand Up for your prostate campaign!
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