If I was to talk about my life before diagnosis at age 55, my father died from prostate cancer 33 years ago at 67. Back then there was no PSA test, so the only way you discovered if you had prostate cancer was when you ended up having symptoms and unfortunately by the time you have noticeable symptoms, you were stage 4 which is very advanced. That was the situation with him. As a result, I was very much aware of Prostate Cancer. My mother also died from cancer, but it was bowel cancer in her case, and it wasn’t until she was into her 80s. So, I look at that sort of differently than my father’s whose life was cut short.
As I was aware of Prostate cancer, when I heard on the radio that this new blood test had been developed that had the possibility of predicting prostate cancer before it got to an advanced stage, the PSA test, I thought to myself, well that’s something that I’m going to have done.
And then when I was in my 40s, I discovered that I had Type 2 diabetes, which is common in Ireland, and that meant my bloods were being monitored on a regular basis because of the diabetes, so I was getting the PSA test done every 12 months or so as well. Even so, I would say looking back I had symptoms, but I didn’t realize they were symptoms of prostate cancer at the time.
Certainly, I can point to changes in my bladder function. In the months before the diagnosis, it started that, I could not hold urine for as long. I was driving to Dublin a lot then and whereas I had been able to get to Dublin without needing a toilet, now by the time I hit the dual carriage way, I was dying to go. I had to stop at a garage, which had never been the case before. I also noticed that I could not empty my bladder fully when I discussed it with my two older brothers one of them dismissed it. He said, “Oh sure that’s just growing older.” That just happens to men.”
I had two other symptoms which got me to go and proactively follow up on the PSA test and specifically check the levels. One which was abdominal pain turned out to be nothing to do with Prostate Cancer, but it did give me a push to be even more proactive. I’ve been told since by my consultant that if I had not been pro-active about checking I would probably not be alive now.
When I was diagnosed, I was in a group of people whose PSA level was not very elevated. It had only gone up to 4 and for the type of aggressive rare prostate cancer that I was diagnosed with, it should have been much higher. The GP only got concerned because within 12 months it had jumped from three to four. Only because I was proactively getting the PSA tests on a regular basis, they were able to notice that increase. If I had gone in at 55 to a GPs office for the first time and had the PSA test done and it, had it come back at 4 the G.P. might not have been terribly concerned, but because it had jumped by one in twelve months she was. So then, the procedure is if you get an elevated PSA test, they repeat it within six weeks because certain things can cause false elevations but when I got the second test that was elevated, I was dispatched off to see a urologist.
Before that, I had done a little bit of research and I had realized that unlike Ireland, some countries, as a standard approach to prostate cancer they do an MRI of the prostate in addition to doing the PSA blood test. Rather than wait on the public system to schedule me as I inquired and was told that there was a three to four month wait for an MRI, I got the G.P. to organize an MRI for me. We are fortunate in this country as an MRI only costs €200. I have spoken to men on American blogs and blogs in other countries around world where MRIs can cost a couple of grand and would be outside of the reach of the average person.
When that MRI came back, it was clear I had prostate cancer. It was clear that the cancer had broken through the cap of the prostate already and had invaded my lymph nodes, and the person that did the MRI was able to say that it was in at least one lymph node, surgery confirmed it was in two.
I was referred to what they call a rapid access prostate cancer clinic here in Waterford in the Regional Hospital public clinic. Absolutely brilliant service. Was seen very, very quickly. The urologist arranged then for me to have a bone scan and two other scans to establish whether the cancer had spread to other parts of my body, and they were able to confirm 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. Right, you know, just go in there and get rid of it.
I mean, 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. Unfortunately, I’ve been left with permanent Incontinence. They don’t talk too much about the effects on a person’s sex life, erectile dysfunction, or anything and that’s very, very important, you know.
So we went ahead. When you’re told that there’s a multidisciplinary team and they have agreed that 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. That got infected and left me with sepsis. I developed a clot in my right leg that traveled up into both lungs and I ended up with pulmonary emboli (clots) in both lungs.
You can look at things and say you were lucky, or you were unlucky. I was unlucky to have had bad complications After surgery and that’s negatively affected the attitude of various consultants that I’ve seen since to try get help to improve my quality of life as it colors their attitude. I had my first reoccurrence within the first year, but I was able to have a new type of scan in Germany which can find the cancer early, a PSMA scan which found the cancer in a lymph node that I had stereotactic radiotherapy to. While now four years on the cancer is growing again, I am glad this new scan is now available in Ireland including Cork University Hospital.
However, as a gay man who had lived through the 80s and 90s when we had the HIV and AIDS pandemic, I feel lucky to still be alive.
I have found that there is an incredibly significant difference between straight Prostate cancer groups and LGBT plus groups. I think people who are LGBT in the first place have already had to come out. They are more inclined to talk about the issues that are bothering them, and I find that when you are participating in an LGBT group, people are not concerned about raising things like incontinence for instance or erectile dysfunction.
The important thing for me afterwards I suppose is that when I was younger and was living in Ireland where homosexuality was illegal It took me quite some time to come to terms with my sexual orientation and to be happy and have a healthy attitude to it. As a result, I didn’t really see the need to put cancer in a closet. I mean some people said to me, no, don’t tell anyone, people will start avoiding you. That wasn’t the way for me to deal with it. I remember quite clearly, when I found the first LGBT groups and the comfort that you get from being around people like yourself. Post prostate surgery I wanted to try and find people; I wanted to try and find other gay men who were in the same boat as me and be able to chat with them and ask questions.
Something that really disturbed me was I felt that my masculinity was being taken away from me. Having come to terms in my 20s with being gay and being a man, I felt that that my masculinity was being taken away from me again and I needed support but when I went looking, I could not find anyone, and I could not find any support groups. I wanted another group of men that I could sit down with who also had prostate cancer. That I could talk this through with. I wanted to talk to men who have been on the path already and maybe were a year down the road or two years down the road and could tell me what probable future I was facing but the reality is that there are not any support groups in Ireland at all.
I was contacted by a friend who was diagnosed as having HIV in his early 20s, a couple of decades ago. He reached out to give me support from a different perspective. To sort of say, look, it’s not necessarily going to kill you, or if it is, it’s not going to kill you very quickly, right? Yes, they’ve told you there’s no cure, but at the same time there are treatments.
I know I am at an earlier stage of the journey. I tend to look at Prostate Cancer as a train that we are all on and some guys get to get off the train and stay in station for a while, but the chances are you end up back on the train again and will go on to the next station and I know some people out there who are further along their cancer train journey than me. My friend drew parallels, with being HIV positive and me having prostate cancer and he said don’t do what I did. When I was diagnosed as being HIV positive, way back in the day, I thought my life was over and I approached my life from that perspective, don’t do that. Continue to live as best you can, and I believe that was a great piece of advice to get. There are parallels in that situation, so yeah, in a lot of ways that helped.
I just think that what we need to do is we need to provide help for men who can’t see themselves getting out of the recliner to talk about it, to take the stigma out of it. You can stay 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 man that’s not doing very well, doesn’t have a lot of support, maybe doesn’t have a partner, maybe doesn’t have a family which a lot of LGBT people wouldn’t necessarily have. That would be a huge step forward.
I haven’t worked since my diagnosis, but I’ve been fortunate in terms of having a very supportive employer. Not everyone is that lucky. The effects of the Prostate cancer have left me with daily fatigue, difficulty concentrating and remembering things, Incontinence, and a few other things. It leaves me feeling that I’m a shadow of the person that I was. I used to get up an hour early before going off in the mornings and bring my dog for a 2-3 kilometer walk and then go off and often work a 10–12-hour day however now when I bring my dog Percy around the same distance mid-morning I’m exhausted. Despite this Percy gets me out of that recliner and helps me stay positive.
In the scheme of things, I’ve been both lucky and unlucky. I choose to take the view that I’ve been lucky. I’m still here, I’m still able to fight it and live the best life I can. I’m able to deal with it reasonably. I’ve absolutely had support along the way. I have had therapy. I have an incredibly supportive family, supportive colleagues from work and supportive friends. I’ve also found an incredibly supportive online community and I’m extremely glad that I reached out, that I went looking for that type of support because it helps me enormously.
Bill is an ambassador for our 2022 Stand Up for your prostate campaign #STANDUP2022 Click HERE for more information and support on Prostate Cancer