What kind of a mark does cancer leave on men and what is the role of their women when facing the disease? Why are oncological diseases still stigmatized and why should hope always be put before statistics? These were the questions we discussed with the President of the Slovenian Oncology Society for Men – OnkoMan, Gregor Pirc.
More than two decades ago Gregor got the diagnosis of testicular cancer. This experience awakened in him the realization about the importance of activation and collaboration of patients during the treatment process. We have prepared a summary of the interesting discussion with a man who is not afraid to talk about male fears and stay alive while doing it.
I became a volunteer. My own experience strengthened my belief about just how important it is to share information and experience with other patients. When I faced the diagnosis, I did not know anyone who survived this type of cancer, but I heard many stories about those who died. It all began in 1998 when at 24 years of age I felt a lump on my left testicle. I went to my doctor and she referred me to an examination at a specialist. In the reception office of the Polyclinic Ljubljana, the nurse wanted to make an appointment for my first specialist examination approximately two months from then. I was shocked, I felt that something was not okay with me, and I was surprised also by the fact that waiting times were so long already back then. This is why I consciously made up that I was in pain and that was reason enough to be examined that same day.
A urologist believed that my condition was something completely normal, but after all my convincing he referred me to an ultrasound examination where they found a tumour in my left testicle. Together with my results they sent me back to the ordination, but I never saw the doctor who referred me to the ultrasound again and there was no one to answer the questions which were popping up in my head. Very quickly they admitted me into a hospital, I underwent a surgery two days later and in five days I was sent into home care. During my stay at the hospital I did not see that first doctor at all, not even during the ward round, and I wanted him to come to me so we could talk. After a bit more than ten days there was another shock as I got my results back and an invitation to the oncology council.
At 24 years my world stopped. I hoped the results would be favourable, but my worst nightmare came true. At the council they told me how research and further treatment is going to proceed, but what I strongly missed was a human approach. When as a volunteer I started collaborating with the Cancer Patients’ Association of Slovenia, I also started seeing a psychologist. It took me two years to conquer the fear, planted in my head by the environment.
Did the disease change you?
Yes. If I had not had such bad experience with doctors, I would not be doing what I am right now. Because I did not want another patient to be treated like I was, I decided to help others. In 2004 I became a member of the Cancer Patients’ Association of Slovenia and became the first coordinator of a self-help group for men. The group was active for five years, we had meetings every month at the Institute of Oncology Ljubljana, and it was an amazing experience. Wives and girlfriends also joined the group to understand better what the cancer patient was going through.
A disease is a test also for the relationship.
Absolutely! In my case the disease did not influence my relationship, as my then girlfriend and I broke up much later. But some men in the group got divorced because of the disease. Partners did not understand what we were going through. A disease often changes a person, they start appreciating other values and are changing. Their partner might be annoyed by that and some people have a hard time accepting changes.
How does testicular cancer influence planning a family?
Before my second surgery where they removed my abdominal lymph nodes (lymphadenectomy), on the advice of the council, I went to the Division of Gynaecology and Obstetrics Ljubljana to freeze sperm in case I later decided to start a family. The fact is that chemotherapy and surgeries may cause infertility, and in some men even the inability to ejaculate. Luckily I got away without consequences and in a natural way I got a wonderful daughter.
Patient societies can be understood as some kind of a bridge which enables better communication between the healthcare system and its users.
Most certainly. Good collaboration with healthcare institutions is very important. But what is crucial is close collaboration with doctors, because in our experience this saying is very much true: “When a doctor falls ill, they are the worst patient. But when they get better, they are the best doctor.” Only when a person has their own experience or the complete understanding of the disease, they can understand the problem better and not judge anyone.
Thank you for this sincere discussion which enables us better understanding of the needs of cancer patients. For the conclusion I would like to ask you to hold us a mirror. How does Medis reflect in it?
If I only take a look at pharmacy, I see you in the first place. But not because I know a lot of your colleagues, but foremost because you are Slovenians. Our mentality is different, we understand each other better because we live in the same environment, and can therefore discuss and agree many things. We need to support local companies and collaborate with them. And most important – you are human. This is why I am always looking forward to collaborating with you!