What It's Like to Have Your Testicles Removed as a Young Man

Two years ago, while working as a scrub nurse, I held testicular cancer. My working day began with a 20-year-old man undergoing an orchiectomy – the removal of one or both testicles. The guy was wheeled into theatre, doped up and veiled entirely, bar the surgical site: his balls. Working with skill and precision, freeing the malignancy from the patient's healthy tissue, the surgeon handed me a small, hard, walnut-sized tumour. The sight of it was overwhelming – the fact this innocent-looking knot of flesh posed such a threat to the young man's health.

Testicular cancer has a 98 percent survival rate and is the most common cancer of men aged 15 to 49 in the UK, with rates peaking in the 25 to 34 age group. But if it's not caught early – if those who find a lump don't speak up in time – patients face extensive chemo and radiotherapy, or – in the worst case scenario – death.

I spoke to four men who have all survived testicular cancer and an orchiectomy, as well as Paula Hemmingway, whose son chose to wait in the hope that the lump he'd found on his testicle was benign, but ultimately succumbed to the cancer.

VICE: Can you tell me about how your life changed after you first became ill?
David: I was diagnosed at 25. I work as a doctor, and prior to discovering the cancer l was thinking of going into oncology as a career. I had geared up my placements for the next year to include oncology placements, and now that I've gone back to work I've been working in oncology.

When I was initially diagnosed, it was the secondary that was found. I had a cancer that had spread to the back of my tummy and which had grown quite large, to about the size of a small melon. When I knew what it was I was thinking the worst and was sort of gearing up for, 'Is this even going to be treatable?' And then someone had the bright idea of, 'Let's investigate to see whether it's testicular.' When they did the ultrasound and they did find the small testicular primary, it was such a relief. Due to my medical background I knew that the prognosis was so much better. I think I freaked out the sonographer, him saying, "I'm so sorry – I think I can see testicular cancer," and me being like, "Oh, thank goodness."

Having a grip on exactly what the problem was became a great help to my family. We're all medical professionals, so speaking a common clinical language with a bit of medical interest and curiosity took some of the stigma out of it. On the flip-side, places that were previously humdrum for me – you, know working places where I had to be every day – suddenly became terrifying. Going into hospital appointments, seeing doctors when you were aware of what the the outcomes could be, had such a profound effect on me. Suddenly hospitals became much scarier places than previously. It was very interesting, suddenly swapping from doctor to patient and seeing everything from the other side

How did your family react to the news?
I remember talking to my mum on the phone and thinking, 'I'm about to give you the worst news that you've ever had.' That was quite sad, to be telling my mum that her son had cancer. And so I didn't really want to. When they all came over from Ireland to the UK, my mum stayed over. My sister was working in Ireland, and as soon as she heard she left work and got on a train without even a change of clothes, which was incredible. As soon as she arrived at the airport I felt a massive sense of relief. Someone's here who I can trust and who can take charge a little bit.

At the age of 25, when you received the news did you go through a cycle of anger, the unfairness of being so young and getting that diagnosis?
It was an interesting time, because six months earlier one of my best friends had passed away from a brain tumour at the same age. I was still getting over the grief of that, and I had a lot of those reactions of, 'Here's this person that's so young, this seems so unfair,' and I think I processed a lot of that then as well. I had a lot of questions about why could this happen. l was wrestling with God and my faith. That happened to me more then.

So by the time I got diagnosed, I remember thinking, 'My friend Michael went through all this and now it's my turn.' That whole sense of you being entitled to a long life and a family had already been stripped away by that bereavement. So with my own diagnosis, I remember feeling very grateful that it was very unlikely to be terminal and very grateful that I could receive treatment. I was very grateful to my family who rallied around me. There were times especially going through tough chemo and post-surgical recovery that I did get angry and had to process a lot of that; during a lot of the recovery period I realised I had pushed that to the side and willed myself not to get annoyed and accept that this is the way that things are. I had to unpick a lot of that in the months afterwards, which took a long time. I think it was important to process that, but it all happened to me a lot later because of that event with my friend.

How would you describe your attachment to your surgeon?
It was a chap called Mr Patel, and I just felt this massive sense of trust that he could do it – l just thought, 'You are the person to do this.' It's funny – I saw him today, because I work in the same hospital as him, which is lovely, bumping into him again. I think my mum felt similar, the fact that she was putting her son in the hands of this person for a nine-hour operation with three different consultants. He was there for the whole thing. He only had a ten-minute break in the middle of this nine-hour operation, and he used it to tell my mum how it was going. It was so meaningful, and he probably doesn't realise what a significant impact he's had on me and my family. Every time I see him I feel a sense of gratitude and a lot of respect

How do you first recall David telling you he had discovered the cancer? What was his attitude like at the time and do you remember how you reacted?
Pauline: We knew very little about TC, though I knew enough about medical symptoms that lumps anywhere in the body were danger signs. David had the very large lump for quite a while and made himself scarce to family and friends. He obviously knew something was very wrong and chose to ignore it.

How did you watch your son change emotionally throughout his journey after diagnosis?
David was very quiet, mostly. He'd moved back home after diagnosis and seemed to find a sense of safety there. He was mostly relaxed and spent days watching TV and using his computer and phoning friends. When he was feeling scared, David tended to lash out at me, which was fine because he knew I felt this was my fight, too, and we were in it together. Only once did he break down and cry in front of me. I hugged him and told him he would get better and live a regular life again one day. He found comfort in my words, and I an understanding of his behaviours. I pretty much went with the flow of his daily moods. After all, he was scared – and that much I could understand.

How did David cope with his first round of chemo?
David was very scared the first day – so scared that the nurses had a difficult time putting his IV in because he was sweating so much. He spent eight hours a day having chemo. I sat by him all day, every day. When he hit the nausea wall we decided marijuana was worth a try, and thankfully it worked wonderfully.

What is your standout memory of David's fight?
David taking his last breath while I kissed him and hearing the heart monitor flatline. The most heart-wrenching experience a mother can have, and I must still live on without my baby. Had he got checked earlier, David would still be here. I don't want anyone else going through what David did. Check yourselves every month!

Do you remember how you reacted when you first discovered the cancer?
It was a very daunting prospect. I was immediately told it wasn't good news when I had my first scan. My first reaction was one of genuine fear, but also the need to understand what was happening to me.

Is there a history of cancer in your family?
No.

How did you re-establish ownership of your body following the orchiectomy? Did losing a testicle cause you have any thoughts about your masculinity?
To be honest, I have never questioned my masculinity. The operation needed to happen, and quickly. There were initial queries about obvious concerns – the ability to have children, what it would look like, etc – but that wasn't at the forefront of my mind. I was very open about it with friends, and I'm very happy I was, as it normalised it quickly for me.

What were your first thoughts coming round after the orchiectomy?
I wanted to see my mum.

In your opinion, what are the primary misnomers surrounding testicular cancer?
I think some people think that you will lose total ability of your testicular region. Whether this is the ability to have sex, or children, etc. As it's a reproductive organ, it's generally very hard to imagine having an orchiectomy and being 100 percent after, but it really doesn't matter if you have one testicle or two.

What's your standout memory of those years battling testicular cancer?
I have great family, friends and colleagues, who I'm lucky to have. The fear of recurrence is there as well – which will never go, I don't think, but I'm cool with that.

What is your initial memory of discovering the cancer?
Steve: At 33 years of age, with two young children at home, I was in a state of shock. l thought, 'Young, healthy and invincible young adults like myself don't get cancer.' I'd been having strange pains in my right testicle for a few months, and it had become so bad that I couldn't even sleep at night. I still remember the moment I felt the solid mass on the top rear of my right testicle. My heart skipped a beat. That was six years ago, and it will always feel like yesterday to me. After the shock wore off, my warrior mindset came to life. My wife and I had worked so hard to get to where we were, and had made so many sacrifices. We finally had our own home and two beautiful children. There was no way cancer was going to take me now, and I vowed to fight it to the end.

How did you feel yourself alter emotionally throughout your journey following the diagnosis?
After cancer, I had a newfound appreciation for life and how precious and uncertain it can be. It wasn't until my two-year post-cancer meltdown, when I'd lost some friends and had a recurrence scare myself, and started suffering from post-traumatic stress disorder, that the true evolution really started to happen. It's less from cancer and more from my PTSD after-cancer experience that I really gained a very intimate understanding and appreciation for just how deeply we can struggle as human beings, and that made me a far more compassionate person. My PTSD experience was so bad, and I felt so little control over it that I contemplated suicide, because I just couldn't stand to suffer like that any more. I didn't know how to control it or end it, and committing suicide was a way out. I didn't do it. My family needed me, and I doubled down on my resolve to find a way to move forward. When I found my path forward and a way to heal from all of this, naturally, my focus and priority in life shifted towards helping others do the same.

On reflection, how do you think you could have been better prepared by your medical team for the wave of emotions you would battle in the years after your diagnosis?
When I was fighting cancer, the prevailing attitude of medical professionals was to give you a pat on your back after finishing treatments and to send you on your way, but the mental and emotional challenges I've faced after cancer have far exceeded the physical challenges of the cancer fight itself. I personally believe that the statistics out there for rates of post-cancer depression and other mental health issues in the cancer survivor population are artificially low. Especially in young adults. I don't know of any young adult cancer survivors that haven't suffered from mental health issues after cancer. I think every cancer survivor, after they ring that bell and treatments end, ought to have at least one counselling appointment with a post-cancer care and survivorship specialist who's more aware of all of these potential issues and pitfalls, even if they don't think they'll need it. That way, if the patient does start experiencing them, they won't be blindsided by them and will know that someone is there and that they'll have the resources they need. One of the worst things about when I started experiencing PTSD is that I had no idea who I could even go to for help in my area. I'd never felt more alone in my entire life, and no one should ever feel that way. There's a responsibility to protect patients from things they're not aware of, and post-cancer mental health is one of those things.

How did you come to reconnect sexually with your partner and yourself?
My wife and I have always been very sexual and physically intimate with each other, but having cancer put that on hold for a while. After my orchiectomy and CT scans were completed, my cancer was found to have spread, and so I went through three months of complete misery getting chemotherapy, and then had to get a retroperitoneal lymph node dissection surgery. It wasn't until after all of that was done that we were finally able to reconnect, and we just had to take things slowly and gently for a while. My blood counts were still so low after chemotherapy that I couldn't even really come – or at least, not like before. I would just start to black out! The running joke about men not being able to use both "heads" at once was literally true with me for a few months.

Did you decide for or against a prosthesis?
I have always been extremely averse to fake things and fake people, and so the last thing I wanted in my body was a fake ball. I never even considered a prosthesis.

What one piece of advice would you offer to young men facing a diagnosis of testicular cancer?
You have powers within you that you don't realise. Not only are you going to fight this cancer and win, but you're going to overcome it all and become a far better person than you ever were before. You're never alone in what you feel, and all of the help and guidance you need is just a click away these days. It's a small world. No one fights alone.

How old were you when you first underwent your first operation?
Mark: It was 1984. l was 24 years old at the time of the first one and 26 years old for the second orchiectomy, in June of 1986.

In your opinion, what are the primary misnomers surrounding testicular cancer?
That you're no longer a man if you don't have testicles, and that you cannot perform sexually if you don't have testicles. Both are very untrue. I never did get emotional about losing my testicles; I never believed that was where my manhood came from to begin with.

What message would you like to deliver to younger men going through the same ordeal?
Having your testicles removed does not make you any less of a man! It bothers me that there's still the stigma with that and it isn't talked about publicly. I believe a lot of young men die from testicular cancer because they're too embarrassed to go get checked before the cancer gets to a stage where it is no longer curable.

What was the most memorable experience you had with a doctor thought treatment?
The day I had major surgery, l had all my lymph nodes removed. One of my doctors went to the recovery room to tell my wife, Paula, how things went. She broke down and he brought her to the recovery room to see me. Clinically, that is an absolute no-no, but my doctor wanted to let Paula see that I was OK. She was only 19 at the time, and I think he had a real soft spot for us because he had children our age.

How do you think the experience has shaped the man you've become?
I've realised that life is not be taken for granted. I credit the experience Paula and I had with cancer for us having such a strong marriage. We will have been married 34 years in August.

For advice about dealing with cancer, contact Macmillan on 0808 808 00 00, any time between 9AM and 8PM, Monday to Friday.

@MillyMcMahon