“I feel not many in my age group are aware of how some cancers can affect younger people.”

Published: 03 June 2024

Jonny was 25 when he was diagnosed with testicular cancer after finding a lump in his testicle. Since then, he has had major surgery and cycles of chemotherapy. Read Jonny’s story and find out more about the information and support available.

In October last year, Jonny (25) had started to notice a few changes to how his right testicle felt. He checked the testicle and could feel a lump, so he decided to contact his GP about this, who arranged for him to have an ultrasound a few weeks later.

Jonny now wants to encourage other young people to be aware of changes in their bodies and to seek advice if they spot anything unusual.

Jonny’s story

Since finding my testicular lump back in early November, I have not shied away from being public about the importance of knowing what feels right for your body, and being vigilant about any changes you notice.

As a young man, I feel not many in my age group are aware of how some cancers, such as testicular cancer, predominantly affect those who are younger rather than those who are older.

There can also be a bravado among young men that they don’t feel comfortable discussing aspects of their health with their peers or even with their GP, so I am passionate about getting as much exposure on this as possible.

I’ve been open on social media about how to do a testicular examination and in explaining what you can expect if you find something that does not seem right.

"I noticed my right testicle had moved and my testis were tender."

A few days later I was getting changed for a night out with friends and I noticed my testis had gone back to its normal position in my scrotum.

When examining the testis, I felt a lump on the normally smooth surface of exterior. When I was back home, I contacted my GP and shared my symptoms. My GP got in touch to say they had scheduled an urgent ultrasound scan of my scrotum.

Two weeks later, I had my ultrasound. This was a 5 to 10 minutes painless procedure. The sonographer commented that there was a shadow on my right testis, and they would be sending a “red flag” radiology report to my GP. This was on a Friday, so I had to wait until Monday before I heard back from my GP.

The Monday came and my GP rang me to say he would be sending an urgent referral to urology. As I had access to my medical record on my phone, seeing the words “irregular and heterogenous testicular lesion highly suspicious of malignancy”, I was alarmed but not too panicked as I knew I was in the system.

“My urologist examined me and explained I had testicular cancer”

In the appointment, it was explained that surgery to remove the entire testis and spermatic chord would be the most appropriate course of action.

At this point I wanted the whole thing out of me. She explained that the surgery will take place within a few weeks. In the interim I had bloods taken to test for tumour markers and a CT scan of my chest, abdomen and pelvis. The scan was to stage if there were other tumours.

I was also sent for sperm banking bloods, as young males are offered sperm banking due to the potential effects on fertility following surgery and cancer treatment.

The next few weeks were sobering but I tried my best to stay rational. My family and close friends have been a real comfort throughout this whole journey.

"The week of my surgery arrived, I was nervous but ready."

On the Monday I had my CT scan which came back clear. The next day I had my sperm banking session and Thursday was my surgery. I knew I would be looked after, and I knew this was to make me better.

I remember lying on a bed ready for surgery with the oxygen mask over my face, I felt drunk but then drifted off. About an hour later I was awake in recovery, and within 2 hours I was on my feet and back home. What a relief.

In the New Year I had my tumour bloods re-tested and a month later I had my routine referral to oncology. I met with an oncology consultant who explained that there were no signs of cancer in my lymphatic system and that my CT scan was clear. It was helpful to talk face-to-face with someone and ask some more technical questions due to my medical background and understanding of biochemistry.

“I found out my post-surgery tumour blood levels were raised”.

My consultant arranged for my bloods to be re-tested to see if my levels were going down to the normal range or continuing to increase.

This was when I heard the most gutting news. My consultant explained that my levels had increased significantly from December to January. This meant that I needed at CT scan to re-stage my cancer and I needed to urgently begin chemotherapy.

I can remember this phone call crystal clear as I had thought that the cancer had been contained to my right testicle, and that all I needed was surgery with the potential option 1 cycle of chemotherapy.

"Waiting is the worst as I wanted to start my chemotherapy and stop the cancer.”

Jonny is in his twenties and is lying in a hospital bed.

A few days later I had the second CT scan, followed by a meeting with my oncology consultant to sign the consent for my chemotherapy. She reviewed my CT scan which showed a few swollen lymph nodes in my back. This was likely what was producing these high tumour marker levels.

I expected hair loss, fatigue, and appetite changes from the chemotherapy. I had an information session with one of the nurses which explained what drugs I would have. Bleomycin, etoposide and cisplatin - together with other medication and steroids to prevent sickness and nausea.

I was lucky as I didn’t experience many side effects. I wasn’t sick, in significant pain, and I didn’t need additional medical support./

“After my 2nd chemotherapy cycle my consultant told me my marker levels had fallen significantly which was positive.”

I found out my kidney, liver and red blood cell levels were within an expected range. It was a relief to hear and I hope these levels continue to fall as I carry on with my treatment.

I still have my fears but I am proud of how far I have come and what I have gained from this experience. My post-chemotherapy scan showed the lymph nodes had shrunk in size, but still looked suspicious. My oncologist discussed that it would be best to go for surgery.

I was referred to the Royal Marsden in Chelsea to see a remarkable consultant urological surgeon. He explained the nerve sparing retroperitoneal lymph node dissection procedure he was going to carry out which would involve a 12 inch incision from the top of my abdomen to the top of my pelvic region. The idea of this happening to me was frightening.

Only 6 months ago I was enjoying my 25th birthday, and I was now waiting for major abdominal surgery .

"Having cancer is like going through a war zone both mentally and physically."

Jonny is in his twenties and has no hair following chemotherapy.

I feel so relieved now to be on the other side as I was recently discharged. I am now recovering for the next few weeks and will likely continue surveillance for the next 5 years. Beyond the relief that these experiences are over, and the gratitude for all the gifted medical professionals who have made this possible. I feel more connected with myself, and other people living with or affected by cancer.

I do have days where I can laugh about spending less money on hair products or I can be crying in the mirror because the reflection I see of myself is so far removed from what it was before.

In the last 7 months, my life is nothing like what it was, and I don’t always think other people always recognise this impact. I feel many of my friends think I’ll be fine once treatment ends, but a diagnosis of cancer can and does stay with you.

I try my best to be positive, but it can be tough. The huge support from my family, close friends, my work and even strangers, has been invaluable. I’ve sadly lost a few friends but importantly this experience has taught me a lot about what I need from those who are in my life.

I shared a quote on my Instagram, and this has helped to keep me going throughout my journey: “You’ve been given this mountain to show others it can be moved.” I want to raise awareness about testicular cancer to help other young people know what to look for. I have been really touched by the messages I have received saying I have inspired them to be more vigilant about their health.

Listen to Jonny's interview on Gaydio Breakfast.

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