Confusing and traumatic testicular cancer journey - orchidectomy, infection, hematoma

Hello all,

I am coming towards the end of all the worry and anguish that the testicular cancer journey can cause so I wanted to reflect and share what happened to me.

Part of that is because I think it will help me write it all out, but also because sharing my story might help someone else going through something similar, reading other people's situations and their process of treatment helped me during this time - there is often something to relate to even if no story is the same.

Apologies for the length, but thanks for giving me the time if you do read.

I had a significant swelling in my scrotum around my right testicle and it had been in place for several years, to my embarrassment. At various points, I was told it was a hydrocele and not to worry, but over the last 12 months, it had started to get larger. There was no pain.

I wanted to get it seen to and sorted because it was starting to become noticeable and it gave me social anxiety. Based in the UK, I went to a GP in August 2023 who examined me, who again concluded it was a hydrocele and referred me to the urology waiting list.

By early January, I still hadn't heard anything and I phoned to arrange a GP appointment to discuss potentially getting the hydrocele aspirated in the GP office, as the size was giving me discomfort.

It was a different doctor from the August appointment and when he examined me, he didn't think it was a hydrocele and surmised it was a growth that had very slowly been getting larger over time. He referred me for an urgent ultrasound scan, which took place 3 days later.

Very shortly after leaving the ultrasound scan appointment, I received a phone call from the urology unit telling me I had to come in the next day as a doctor had seen something he didn't like on the ultrasound scan.

At the appointment the next morning I was told by a urologist that the mass in my scrotum was actually my enlarged, now non-functioning testicle itself, not a sac of fluid. They said it was very likely I had testicular cancer and that they had already booked orchidectomy surgery for the coming weeks, planning to push the mass through an incision in my groin.

I was given the 'chat' with a cancer support nurse and given Macmillan books and info on testicular cancer.

My blood tests were taken that morning and a CT scan of my abdomen was also booked.

This was a time of intense worry. I am a pretty anxious person anyway and I was struggling to fight the intrusive thoughts that the cancer had spread, I was worried about every little feeling inside my body, convincing myself the cancer and progressed and that I could die. It was horrendous and I could barely function in terms of work or tasks etc.

The CT scan came and went, knowing I would have to wait for the results.

I was also referred to a fertility clinic to freeze sperm, adding more appointments to the schedule in a very short time. It felt like a whirlwind of phone calls, meetings, poking and prodding but I was happy everything was moving quite quickly.

Then it was time for my surgery, which by that point had been moved days on three occasions and my designated surgeon changed twice - its own mini-saga in itself that was added stress.

I think because I was so worried about the worst-case scenario of what the cancer could mean for me and my family, the anxiety about the orchidectomy and getting anaesthetic wasn't too intense. On the morning of the surgery, getting hooked up and given the sleepy stuff, I would compare it to a fear of flying and waiting to get on a plane at an airport. You know everything is probably going to be fine but it's still not pleasant.

When I woke up from the orchidectomy there was an immediate dull pain in my groin but I was given oral morphine straight away and it was manageable, although very tender when moving around.

I was placed on the urology ward and kept in overnight as they'd inserted a 'Penrose drain', which isn't a tube running to a bag, but a soft flexible tube that is designed to draw fluid away from the surgical site into a dressing. I had staples. Staying on the ward was quite unpleasant and a new experience to me, it was a difficult night.

The next day I was excited to be sent home and felt clear and fine. However, I think made a mistake in not insisting on seeing a consultant at my time of discharge. I felt like my wound was more raised than it should be and I worried because there was quite a lot of fluid in my scrotum despite the presence of the Penrose Drain, which was removed by a nurse just before discharge, but I was told it was normal. In the back of my mind I worried about potential infection.

The next few days I recovered at home with codeine and paracetamol, but on the fourth day I had a fever, I was shivering and my temperature was above 38C. I went to an out of hours clinic that night, then an admissions ward and I was back on the urology ward by 3am - thankfully, this time I had a side room which did help with the hospital experience.

I was told I had a nasty infection and was given a barrage of different IV antibiotics at regular intervals while they determined what kind of infection it was from blood tests.

The next few days were very difficult. I had a constant headache even through the paracetamol and codeine. The swelling was making it difficult to pee without making a mess, it was sore to do anything other than lie down. My wound was leaking all sorts of pus and fluid, nurses had to change my dressings two to three times a day and it was all pretty smelly. Not nice.

By this point I had been told there were no markers in my blood and that my CT scan had shown there was no sign of metastasis in my abdomen. That was fantastic news and it really reduced the overall worry.

I was in hospital for seven very long nights, then sent home with two types of oral antibiotics and a plan for district nurses to come into my home and change my dressing daily.

I've now been home for 2 weeks and the wound is still healing, I'm still getting my dressings changed but it's mostly my partner doing it now. Thankfully, the smelly fluid subsided before I left hospital and it's less leaky.

Two days ago, I received a phone call from the urology ward and I was told I actually never had cancer at all. It wasn't a tumour they removed, the mass in my scrotum wasn't a hydrocele but something called a hematocele, which I think is similar but it's blood, rather than fluid. It was a pretty short call, but it was mentioned they may have looked to drain it first, or given me that option, if they'd known it wasn't a tumour, which was frustrating because that's why I went to the GP in the first place. I feel like in an ideal world I would have more scans of my scrotum and that there was too much emphasis on the initial ultrasound. The likelihood is I would have had to have it removed anyway, but I wouldn't be worried about cancer etc, which was the worst part of it all, really.

Looking online, it seems that it's very rare for these to be chronic within the scrotum, especially when there has been no trauma or injury. I feel like I have a lot of questions but I don't know if I'll ever get satisfying answers.

I still have a fair bit of recovery to go. The wound isn't entirely closed up yet and I have a fairly significant hematoma in my scrotum which I am concerned will require further surgery, although the surgeon told me it could take weeks or months to break down and reabsorb, so it's a bit of a waiting game.

Ultimately, it's clearly good news that I don't have cancer and a big relief, but I still feel like I've been through the ringer a bit and I am still processing everything.

Thanks for reading if you made it this far and if anyone has any questions about any step of the orchidectomy process, feel free to ask.