PVCR Patient Partner - Tom Hope

My journey with PVCR

In conversation with Aoife Gordon, undergratuate medical student, UCD School of Medicine
Read time: 9 minutes 50 seconds

Tom's Story

I went from 20 to 62 without ever going into the hospital or needing very little medical treatment. Initially, as a patient you are very poorly informed of your illness, and you have to depend on the doctors. I was lucky that I had a very good GP and oncologist.

My GP did a blood test for me, well I didn’t even know it was a PSA test. I just thought it was a blood test as part of my usual check-up. I was referred to an oncologist and it turned out that I had a low-grade prostate cancer (Gleeson 6). I didn’t know anything about the prostate. I was offered the option of Surgery or Active Surveillance. I decided to go on active surveillance which meant that I would be required to get a PSA blood test every 3 months with my GP and go back to my urologist every 6 months for a check-up. My cancer is a slow growing cancer and I’ve been on active surveillance for 11 years now.

I got involved with the Irish Cancer Society in 2013, when they asked me if I would be interested in going on a training course to become a Peer to Peer supporter and to share my experience with other prostate cancer patients. At the course, they talked us through the science, psychology and survivorship of cancer. As a result, I became more aware of cancer issues. I also got involved in Men Against Cancer, a prostate cancer support group.

I am not an expert, but I am a lay man and a survivor. You become more aware that you can share your experience and that by doing this, you can give support and comfort to fellow survivors.

When did you first become involved with PVCR?

I am involved with the Irish Cancer Society as a volunteer driver and a Peer-to-Peer support trained counsellor since 2013. In 2016, they rang me up one day and told me about the Patient Voice in Cancer Research (PVCR) Committee who were just starting out in UCD and asked me would I be prepared to join the committee as a patient representative.

I went along to that first meeting in 2016. I was interested and got involved in it from there. When you’re retired, you’re looking for something to get involved in and be focused on. I found that first meeting to be very open and friendly. I already knew several people from other groups I had been involved in. I was among friends. I felt the objective was very open and it was a way to contribute to cancer programmes, advocacy and research.

I attend any of the PVCR meetings and workshops that are going on. They have a meeting every spring which I go to and that’s also connected with UCD Relay for Life. I was involved in a workshop in Cork last year and the Dragon’s Den workshop in Galway. I enjoy going along and meeting cancer researchers, cancer advocates and survivors. We all want to improve life for people. That’s why I keep going back.

"The other thing about Patient Voice is that you meet fellow survivors of, for example, breast or ovarian cancer and you all find yourselves in the same boat. You have survived something that you would never wish for. It is with you, you’ve come through it and you share that sense of camaraderie and survivorship. I suppose it’s like people who have served in the war, you have something in common".

Can you detail your involvement to date?

Well, I’m there as a non-scientist, a “common sense” voice. I worked in business for 38 years, so I have experience on what is useful in any organisation and what is not. If people think my opinions are helpful, I am happy to share them. If not, I don’t mind at all. You draw on your personal experience and your personal approach to life. Some of it is cancer related, some is experience related. We know what the objective is and we all contribute.

If you’re on a committee, it’s up to you to contribute. Sometimes other people will agree with you and sometimes they won’t. It is up to everyone to throw their bit onto the table and often, good ideas come from that.

Most people who are involved are prepared to share their stories. We know that our experiences are not unique. We hope that by sharing our approaches and our ups and downs, we can give support and comfort to others. I’ve met people with prostate cancer who don’t want anyone else to know about it. Different people deal with things in different ways and there is no better or worse way, you just have to find something that you’re comfortable with.

One thing I found from being a volunteer driver is that people undergoing cancer treatment are always hopeful. Many will never share their story. We talk about everything and anything else. We all are afraid. We understand the risks, but at the end of the day, we are hopeful that we will come through it. We might not all walk the same road, but we are all hoping to go in the same direction.

At the PVCR meetings, it’s really nice to see people who were diagnosed with cancer 10 or 15 years ago who are still there. Others aren’t so lucky, life is cruel.

Had you known much about cancer research before?

Absolutely nothing! I thought that it existed in ivory towers in universities! As part of the Patient Voice, we have had visits to some of the laboratories out in the Conway Institute and I have found it all very interesting. It shows you the amount of effort and research that goes into it and how slow and thorough the process is. If you’re not involved in university or even medicine or science, you have no idea about these things. There is very little about it in the general press if you are not reading scientific journals.

As it happens, I am now involved in a number of other scientific committees, one of which is with the National Cancer Control Programme. I am on the committee as a patient representative who is reviewing the current guidelines for the diagnosis and treatment of Prostate Cancer. As part of that I get sent medical research articles to read on a regular basis. I am also involved with Men Against Cancer/ Europa Uomo (a European Prostate Cancer Support Group) who send me some articles outlining new research and developments on prostate cancer.

Some of the article I read and understand, and others are beyond me. On the other hand, I am happy with what I understand and what I don’t understand I say “Look, it’s not my field” and I don’t get annoyed or upset about it.

How important do you think patients’ voices are in the research process?

At 72 I know a lot more about life and diseases and how different events impact on your life than I did at 20. A lot of the researchers I have met are very intelligent and very young. They might not have the perspective or experience that a patient or survivor does.

I find all the researchers very willing, interesting and engaging and it’s great to see what they’re doing. The science behind it is very complicated but if you don’t express it in lay terms, people will look at it and not understand and that’s such a pity. It’s so important that research and science, at least in public health medicine, reaches a wider audience. It is vital that it is funded and supported.

Take a recent example, the people who are successful in explaining the COVID situation are the people who explain it simply, not the people who are explaining the complex history and science of SARS, because that just goes over my head and I stop listening.

The real impact comes from a simple story told, either of personal experience or the story of a researcher who has spent years coming up with something significant.

What have you learned about patient and public involvement in research since becoming involved?

I have been involved in one or two projects with researchers where we help them translate their grant application into layman terms. That was the thing I felt I could help most with. I can’t help with the science of it, but I can help them restate what their objective is in layman’s terms.

I am an accountant by trade. I know that accountants talk in accounting terms. The same is true in science and medicine. In a lot of cases, I felt I was able to help the researchers to get the right terminology. Sometimes you can throw too much information at somebody and it loses its relevance.

Most research is determined by grant applications and what research peers determine are the best opportunities for positive outcomes. As a patient, you don’t expect to have much impact, but you can help to explain a project or outcome in language that say, a family member would understand. This is vitally important.

What personal value have you gotten from your involvement?

I get great satisfaction from contributing to something that I feel is adding to improvement in either the public perception of cancer treatment or science. In the Patient Voice meetings, you get that personal satisfaction.

When you’re retired, you’re looking for some way to contribute to society, to something that’s interesting and in some way that you can add value. It’s not that you want to be paid for it, but you feel that you want to add something in a way that is within your capacity.

At the same time, you want to enjoy it and there’s a social aspect to it too. It’s nice going back and seeing the same people and hearing how they are getting on in UCD or at home. It’s a two-way dialogue. I think you have to enjoy it. You have to feel that your opinions are helping.

I wouldn’t say that I know everything, but when I have an opinion, it goes into a pot. From that pot, policies appear and you feel you have contributed. There is a consensus. We never get down to voting in favour or against. There is no them or us, but there is a consensus reached and that’s how the committee works. It works very well.

Would you encourage others to get involved?

Of course I would! I encourage people to get involved in advocacy if they are happy to do it. What I would say to people is “Try it!”. You’re not signing up for life. If somebody asks you to get involved, offer to go to one or two committee meetings and then decide. Don’t be intimidated. I’ve stopped being intimidated, the fact that somebody is a professor or doctor or whatever else is not important.

As I’ve said before, I’m involved in the National Cancer Control Programme where we discuss guidelines for the diagnosis and treatment of prostate cancer. I am the only patient voice at it. There are radiologists, urologists, oncologists and cancer nurses. I ask the stupid questions! But in fairness, they are very kind and will always explain.

To a degree, I have learned. In the early stages, I would have shied away from something like that. What I would say to people now, is to give it a try. If you are intimidated and you don’t enjoy it, then don’t continue with it. If you have something to contribute, then do.

If you have been a patient, you can share your experience and that experience can help to express what the issues are. I respect those who say no, I don’t think any less of them, it is a personal choice. As with any illness, people cope with it in different ways. You learn to cope in whatever way you can.