Real voices from survivors and patients, sharing what the brochures never mention.
La tua storia aiuta gli altri a sentirsi meno soli.
The hardest part was not always the treatment itself, it was the uncertainty. Waiting for results, not knowing the stage, not knowing if you would need chemo, not knowing what your life would look like in a few months. That in-between space is mentally exhausting and it is something people rarely see from the outside.
Recovery is not just about being cured. It is about slowly rebuilding your sense of normal again. A lot of people think cancer is like a really bad flu, you go through treatment and bounce back quickly. Fatigue, brain fog, anxiety, physical side effects... they linger longer than people expect.
Impacts on testosterone. It seems pretty common that testosterone isn't measured before or after surgery, and in hindsight I wish I had asked for it as a part of my bloodwork. How do you know if you're in normal range? On days where I'm depressed, low energy, or low motivation, what if that's the culprit?
Socially, it can feel strange too. People mean well, but they do not always know what to say, or they underestimate what you have been through because the prognosis is good. You hear things like 'at least it's the good cancer,' which is meant to be reassuring, but it can make your experience feel minimised.
I also struggle with the feeling that my genitalia has been somewhat disfigured having the one testicle. Diagnosis was difficult. Hearing you have cancer at such a young age was hard on me. Now I'm somewhat paranoid about getting cancer again and get screened every year.
For me there is a pestering thing I carry, a reminder that I live with the lingering defects of chemotherapy, and then a potential ticking time bomb that may or may not explode on me. It does happen to other brothers in this forum. Keeps me mindful of life. But always present.
After all we've been through, there is another one still hanging there. If there was an option to get rid of the second one too I'd take it in a heartbeat. The thought of possibly going through all this again is hugely scary and it's difficult to trust my own body again.
At the same time, it does change you. It gives you perspective, but not in a clean, inspirational way. It is more subtle. You become more aware of your time, your health, and the people around you. You grow, but you also carry parts of the experience with you.
I have no issues having one ball, everything works the same. We can make fun of it and make stupid jokes. But after all we've been through, there is another one still hanging there.
I lost both my testicles and coming to terms with requiring testosterone from an outside source was difficult. I have no balls and I need hormones injected into me to live a normal life. Sometimes I think wow, that really happened. This is crazy.
Especially those of us who are overweight have this problem too. I don't know what was caused by the chemo and the orchiectomy. Could also just not be getting enough sleep. So many potential causes that all build upon one another.
One of the biggest worries has just been feeling on edge whenever I still feel unwell. Until I have my next scan, I'm worried that something somewhere is growing again.
Being told you have the 'easy' cancer and to stay strong when you have stage 3C Choriocarcinoma with brain mets and you know there's nothing easy about this. I don't want to stay strong, I want to go back to being normal.
For me it was confronting my mortality. Also I felt guilty that I had a relatively easy cancer. I'd go for my scans and see people fighting for their lives, some so beaten up that passing would have been kind. I also know that not long ago TC would have been just as fatal as the others. Lucky to have gotten it now not years ago.
Overall it has been difficult but I am grateful to be alive. It has given me a new found appreciation for the life that I have, good and bad.
For many months after treatment, my goal was to get back to my normal life. As I am approaching my one year from treatment, I am realizing the goal is actually just building a new life, given everything that I have been through.
The impact it can have on you socially can be hard to talk about, and kind of roll with and own.
Oh man, I talk about my missing ball all the time.
Physically the hardest point was probably the recovery after RPLND surgery, it's both a huge mental and physical battle. The hardest part overall was probably having to tell my parents and loved ones that I had cancer. Especially as most of us are at a pretty young age, a cancer diagnosis is very unexpected. I wish more people understood that even though the odds of beating the disease is very high, it doesn't make the journey any easier. The chemo and surgeries are still incredibly difficult, as well as the scanxiety that follows.
I love my life just as I did before, but the thought that I had CANCER, the possibility of recurrence is a daily thing for me. Also the post chemo side effects, I still have numbness in my feet a little but the ear ringing is always there and doesn't seem to be going away.
I have harnessed all this into a positive, got back to running, moved into ultraendurance with a sole focus to support those in the fight. I carry the baton of awareness, I'm open, I talk, I encourage. But a day doesn't pass when I don't think about the cancer, and I'm looking for any signs of its return. That is exhausting.
Because of the damage from the cancer, I developed hypogonadism and have to take a form of TRT because my testosterone levels were so low.
I've had testicle pain for the last 5 years and every little pain is scary. The scars are always there as a reminder too, but other than that it's about using my energy for others.
About a year before the diagnosis I started to experience atrophy on the affected testicle. I still didn't see a doctor for a while. I googled all my symptoms and it convinced me that I had a benign varicocele. It was not causing any pain or discomfort so I kept putting it off. I finally scheduled a doctor's appointment when I developed a noticeable, palpable lump.
Waiting on the results after a blood draw or CT scan is the most nerve-wracking part. It's something that shakes me from my normalcy every three months. I know it's unlikely that I experience a relapse, but I still can't help but dwell on that.
I won't sugarcoat it. There will be a lot of unknowns and you'll have some sleepless nights, but those feelings pass. Peace and normalcy is achievable after this.
My dad had it at age 50. I was 18 and a month from high school graduation. There was a lot of uncertainty. I don't really remember it. It's kind of a blur.
I'm an open book. I tell others: don't worry about the stigma, be open. You can have a great support group at a time that feels very alone. I will continue to fight for others till my last day here, and I wish I had someone like that back in my battle.
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