Seeing testicular cancer from a patient’s perspective

My name is José Antonio Barrientos and I’m a Client Services Director at Prime Global. In 2017 I was diagnosed with testicular cancer, and this post captures the week that changed my life.

Being diagnosed with cancer came as a complete shock. It was quite a weird experience because I work in oncology. On the one hand, I was exposed to information about cancer and the treatments available to patients through work, so I was well informed about the disease. On the other hand, having all this knowledge did lead to too much reading about the what-ifs!

It all started in the early hours of Tuesday morning. I was feeling some discomfort, so I went to see my GP at the Royal London Hospital. A nurse assessed me and said I needed to have an ultrasound scan as soon as possible – he looked quite alarmed, and that was the first sign of the bad news to come. He arranged for me to get a scan the same day at Barts Hospital, so I jumped on my bike and ended up cycling across London in half an hour! The ultrasound showed that I did have a tumour, and the urologist I saw that same evening told me that I needed surgery to remove it. Everything was quite emotional, and I remember sitting on a blue plastic chair thinking ‘I can do this, I can do this, I can do this’. I was texting real-time updates to Marc, my partner, and to Gaurav, who was my line manager at the time. At first, I was thinking that I would be going into work later that day and keep working, but as the day progressed, I came to realise that that wouldn’t be happening.

The surgery was scheduled for a week’s time; I was a bit worried as we didn’t know what stage the tumour was at – what if it continued to grow whilst I was waiting? The doctor also couldn’t guarantee that I would definitely have the surgery as scheduled, as the hospital could have more severe cases on that day. I know I would only have been bumped if someone needed the surgery more than me, but I was scared. Thankfully, I remembered that I had BUPA coverage through work. I called BUPA and they found me a surgeon who could operate on Friday morning – none other than Professor David Nicol, Consultant Urologist and Chief of Surgery at the Royal Marsden Hospital.

Three days after diagnosis, I ended up having a surgical procedure called a radical orchidectomy, where the whole testicle along with the spermatic cord and surrounding tissues are removed. My parents flew over from Sweden, where they live, and Marc and I packed up our London flat and drove with Mum and Dad to our new house in Kent, which we’d just bought. We had no furniture for it yet and I remember ordering inflatable beds online so that we had something to sleep on.

Waiting to find out what kind of tumour I had and whether it had spread was the hardest part. I think it took about 10 days for the pathologist to analyse the tumour, and I didn’t know whether it was stage 1 or stage 4. I was reading everything I could lay my hands on, and I also joined a support group through Macmillan Cancer Trust. Speaking to other people who had either had testicular cancer, or who had been recently diagnosed like me, was immensely helpful.

Luckily, it was a stage 1b mixed germ cell tumour that also had some teratoma cells. The CT scan didn’t show any tumours in my abdomen or thorax, so it hadn’t metastasised to other parts of the body. However, because the tumour had started to spread into the nearby tissues, I was offered adjuvant chemotherapy. I had one high dose of chemotherapy to reduce the risk of the cancer coming back. I asked the doctor who was administering the chemo what the treatment was like; having worked in oncology, I knew it could be quite difficult. He said that it affects everyone differently; some people are back on their feet in a few days, for others it completely breaks them. With no way of knowing how it would affect me, I still went ahead. For the first few days, I even wondered if he’d given me the right treatment because I felt fine! However, after a week it hit me. It was probably the worst 10 days of my life. I didn’t feel sick, exactly, but I just couldn’t function. I couldn’t really hear or speak, and everything seemed to be in slow-motion – the best way to describe it is like being underwater. I later discovered that this is a known side effect called chemo brain, and it frightened me more than the cancer itself. I worried that, even after all this, I wouldn’t be able to go back to my job – my work is pretty intense and fast-paced, and at that point I could barely read.

I was off work for about 3 months and just focused on taking each day as it came. One morning I woke up and Marc just said, “Oh, you actually look normal for the first time”, and I really did feel ok! I went back to work part-time and started off with the basics to get myself going again. The first 10 minutes were the hardest because I hadn’t logged into my work laptop for such a long time that my password had expired! IT sorted it out, but they were reading me this 25 digit long alphanumeric code over the phone and I had to keep asking them to slow down as I couldn’t keep up. Thankfully, things kept improving steadily over the next few months and I was able to move back to full-time work, but it did take almost a year to feel normal.

It was very important to me that upon my return to work my colleagues didn’t feel like they needed to tiptoe around me. From day one, I was very open about having had cancer and tried to normalise things, mentioning going to see my oncologist in the same way we’d talk about visiting the dentist or the hairdresser. That did help people relax; it became a very inclusive way of talking about cancer and helped reduce that fear and stigma that are often associated with a cancer diagnosis.

I’m now on a 10-year follow up programme with regular check-ups with Professor Nicol. I used to be quite worried that the cancer would return, but that worry has lessened with time. I almost stopped thinking about it until lockdown happened and I missed my regular appointment. I ended up going into hospital in the summer, 3 months late, and seeing it mostly shut down was unsettling. I kept reading in the news that many people had had delayed diagnoses and treatments due to the pandemic, which made me feel so lucky that I still have access to a great oncologist and that Prime Global has been so supportive. It puts into perspective that not everyone has been as lucky, and I’m very grateful to the NHS and to BUPA for their care.

I hope that by sharing my story as part of Movember, I can raise awareness and help others. You tend not to notice gradual changes in your own body and tumour growth is generally exponential, so it can spread very quickly. It’s really important to check yourself regularly. I didn’t have any of the main risk factors – except for being male!

To find out more about testicular cancer, read our spotlight here:

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Prime GlobalSeeing testicular cancer from a patient’s perspective
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