It all started with a backache in 1992. I was 35 years old, married for 9 years and wondering what was going on. One night I told my wife that I has having wicked lower abdominal cramps but no nausea. I called my doctor at the time probably about 5 am and got told to go to emergency. Ah emergency, that is where I found I didn't have kidney stones, gall stones or the like and was told the next day to get an upper GI.
The upper GI was where my life started to get complicated quickly. I was still tired from going to emergency, semi-nauseous by the stuff I had to swallow with my stomach distended I was getting poked for an ultrasound. The tech was oriental so with a thick accent I got "here's your liver", "here is your pancreas" and the line that start ed it all "what the heck is that". A needle biopsy was scheduled and I find myself on an operating room schedule.
Now there was no talk of testicular cancer at this point. The tumor was near my pancreas and that cancer was on the list. So I get operated on and wake up with tubes everywhere and thinking I had just been stuck with a bad ginsu knife. I had a scar from my sternum down below my belly button and was quite freaked out. Six weeks of hobbling about.
A week or so later my surgeon (a family friend long deceased now) said "hey Jim you have a seminoma" that's a form of testicular cancer. I had no idea what that was nor much of anything about testicular cancer. I was referred to a radiation oncologist for six weeks of radiation therapy. I was working through it all (in IT for a law firm) and pretty much in freak out mode most of the time. (or numb this was a long time ago)
Looking back my moods were all over the place. (still married my wife had to put up with a lot) I'm pretty sure I had PTSD since I was having recurring nightmares for a few years later (bad horror movie type of knife/saw and repeating the operation). If there were support groups in 1992 I wasn't aware or pointed towards them. My wife and I walked this ignorant and by ourselves.
In 2013 I was having other symptoms (20 years later) and had a mammogram. I signed up for a medical study on testosterone and had my first set of male hormone readings. I was unambiguously low and started in the study. I fired my first doctor after I left my testosterone study and found a new doctor. (if you're a guy and have to have a mammogram in hindsight I'd have expected my doctor to at least check my hormones with my medical history)
Fast forward to two years ago where I found a few testicular cancer groups on Facebook. I wanted to help men to not walk down the road I was forced to in 1992. Sometimes I'd ask a question, encourage, or just point out they had support. It was amazing the similarities primarily being total freak out, I'm alone in this and what the heck happens next.
I feel strongly that education, support and fellowship doesn't take pain or shock away of the diagnosis. I feel very strongly that all post TC survivors need hormone testing at intervals after surgery. I find that men often have to push hard to get hormone therapy even when it's needed. Support does provide someone who has walked the road and "gets it". It does not have to be a lonely journey.