April 18, 2001

Daniel's TC story

Hello, I am Daniel, a 22 year old guy from The Netherlands who happened to get Testicular Cancer. I'm fine now, but last year wasn't exactly fun.

HOW IT ALL STARTED

It was November 1999 when I felt a slight pain in my left testicle, but I dismissed it as my pants being to tight. I surely didn't think of cancer. Next day when I woke up, I could barely walk. Every few steps it was like an electric shock in my left testicle, and nearly knocked me to my knees.

But, stubborn as I was, I didn't go to see a doctor. I was a 20 year old guy who went to the gym 5 times a week, didn't smoke and ate healthy. What could be wrong with me. After a few days the pain subsided.

Strange thing was, deep inside I knew something was wrong with me, but I didn't want to submit to it. I finally was gonna meet in person a girl who I had met 2 years before on the Internet (we are getting married end of the summer 2001).

So in December I flew to the USA. Everything went fine, I came back home and went back to the states again in March. While in the States I discovered a lump at the back of my left testicle. Now that got me suspicious, and I went on search on the internet. A few hours later Christina (my girl) came home and found me crying like a baby in her room.

After calling me crazy for a few times and saying I was wrong, I felt a bit better. But she said I should still see a doctor, so I decided that when I got home I was going to see a doctor.

(MIS)DIAGNOSIS & SURGERY

It's incredible how far we have come in the medical field, yet so many mistakes are made. I have really been on a rollercoaster ride. My first visit to the doctor (I don't remember his name) took place in mid May. 2 weeks later I was sent to a urologist. Doctor Loeff (the urologist) felt the testicle and the lump, and said he was 90% sure it wasn't a tumor. But he did order an ultrasound, because he wanted to be sure (THANK GOD)

When my ultrasound came back, he said it looked a little awkward. Now looking back at it, I think he must've had his wrong glasses on, because even I can see it was a tumor, but back then I didn't know much about it. So I got another ultrasound and a blood test. The ultrasound came out fine (I could still strangle the idiot who did it, because he sent me home thinking I was fine), but the blood test however did not.

My beta-hCG was 5(which is just a little bit off , and AFP 7(which is still acceptable). Now that news SCARED me. I still didn't really know what was going on, I just wanted to know what was wrong with me! Doctor Loeff called Professor Nortier (the oncologist who later cured me) from one of the best hospitals in our country, who suggested a biopsy as soon as possible.

So a few days later I had surgery. It was July and a nice summer day, and I was going through the worst time of my life (till chemo...). I was nervous as hell because it was the first time I was going to have surgery. I woke up 2 hours later, and I tried to touch my scrotum. This turned out to be a very bad idea, because I spent the next few minutes curled up a ball in my bed from the pain

Later that day Dr. Loeff walks in to tell me the testicle is gone. It didn't look good and they are determining exactly what kind of tumor I had. What a wonderful day it was. The best part of the day was visiting time (NOT), because I had to tell my parents and 2 friends who also came that I had cancer. I was crying like a baby after I told them. The next day I could go home.

My next appointment was a CT-scan and X-ray of my lungs. The CT was pretty scary to me, because I had no clue of how it worked. I still remember the weird feeling I got from the fluid they put in me. Feeling hot with a metallic taste in my mouth. I felt out of it the rest of the day because of that stuff.

A few days later, Dr Loeff tells me my tumor is seminoma, and everything in my body was clear. I was going to have 30 days of radiation on my lymph nodes to be sure I would be clean. BUT...

A few days later I get told that my tumor is 90% embryonal carcinoma and 10% teratoma. I thought that was even better news at that moment, because I wouldn't have to have radiation. I was so HAPPY.

So I went back the urologist his office, him telling me that they were gonna put me under surveillance. He almost sent me home when he asked if I had gotten my blood test yet. I hadn't, so off I went to get a needle in my arm.

BOOM!!(that's how it felt for me). beta-hCG 27. The doc says, "I'm not really worried." I don't like him very much now, as you can imagine. My mum was extremely upset when she got the result of my next blood test (beta-hCG 44). Not only would I have to go through chemo, but she had read an article about TC from before cisplatin was introduced. She pretty much thought I was going die (she already was upset because of all the stuff that happened to me).

My dad had done some research also, but he found the right stuff, he came home from work that day with an attitude like "we are gonna do this, and nothing can stop us". He was the one who speeded up the whole process about getting chemo. (He works at a pharmaceutical company, so he has some medical background)

CHEMOTHERAPY

I could also make the title hell, because that was what it felt like for me. I made some quick trips to the sperm bank, but I won't go in detail what I did there, every guy knows the routine on here I think.

Halfway through August it all began. I was sent to the LUMC in Leiden, which is one of our best hospitals. I was sent there because the hospital in my own city wasn't really prepared for people with TC (maybe you figured that out already!). For someone who never had really been in a hospital before this all began, the LUMC was pretty impressive, it was almost like a little city. 13,000 people worked there, and they had their own little mall.

I met Dr. Nortier in the oncology department. He was a nice man in his 50s, very calm. The best thing he said to me when I was sitting there was "you are 100% certain of being cured." I can tell you THAT was a relief.

I got to do 3 cycles of BEP(Bleomycin, etoposide and cisplatin) Which meant 9 weeks in total. They did a blood test before I started my chemo, and my beta-hCG was 197 (which is still low compared to a lot of other cases)

I was very lucky to have a healthy strong body, because the first cycle of chemo went by without much trouble, and I was just a bit more tired then normal. The only time I vomited was because of stress before the chemo began. My neighbor was with me for 3 days, he was dealing with stomach cancer. He was a nice guy in his 50s with a lot of humor. It was incredible how he took his situation seeing as he had a 50% chance of survival.

Also, while some people who are in the hospital complain about not getting enough visitors, I GOT TOO MANY!. Almost every day my room was crowded with 6 to 8 people all around my bed. At a certain point I simply forbade them to come in such large numbers cause it drove me nuts. Visiting time seemed like the entire day except for lunch time and after 10pm. I simply couldn't deal with so many people the whole day, especially not later on in the cycles. It's nice to know that you are loved by many people, but they don't need to be there all the time! I even got letters from people I hadn't heard from in years.

I was back in the gym 2 days after I got out of the hospital. I would really recommend this to people, because after 1 day at the gym I felt normal again, though this only happened the first cycle. My red blood cell count never went low, because I forced my body to make more in the weeks out of hospital or I would pass out in the gym. (I nearly did a few times)

Dr Nortier told me right before I got back for my 2nd cycle that my beta-hCG was lower then 1, I was cured!! Would this mean I only had to do 2 cycles I asked him? The answer came back as a definite NO. ARGHH.

The 2nd cycle was a lot worse then the first, I lost my hair a few days before. This time I had a guy next me with pneumonia, he was here because the lung department was full. They funny thing was that when I came in I was feeling as good as new, and he could barely move, end of the week it was the other way around.

I was a wreck after 3 days in hospital. I vomited once because I was too exhausted to stand waiting for the nurse to make my bed, and I had no appetite whatsoever. The worst thing was that the Bleo shots got worse on me. The first three I didn't even notice, but after that I got sick every time I got one..and it became worse and worse with each one. It took me 5 days to get back to the gym. [Editor's note: Bleomycin can do this. If it happens, the doctors should premedicate you with Benadryl and Tylenol before your next infusion.]

The 3rd cycle was really terrible. Christina had flown over to be with me for the worst part, and I am still very thankful for that. I probably would've gone insane without her. The hospital week wasn't that bad, but after the hospital the real hell began.

While in hospital I got the same neighbor as the first cycle. He was getting better also! I don't think I'll ever forget that guy, because he was in a worse situation then me, but he still acted like it all didn't matter. He was going to get better anyway (even before he knew he was). The only thing that bothered me about him was that he got sick every night.

I came home like a wreck, and got to hear that my Bleo shot was moved to Monday instead of Wednesday, because Dr Nortier wouldn't be there on Wednesday (which I think is a stupid reason). So I got my Bleo one day after my hospital week! My stupid ass of course eats lasagna to celebrate his finishing of his last hospital week (lasagna is my favorite food).....I had extreme vomiting the rest of the evening (should've listened to my mum when she said not to eat it).

Outta bed early the next day to get my Bleo. There I was, extremely pale, bald, and purple circles around my eyes, people looking at me like I was already dead. I even heard an old lady say" Oh my God, look at that poor child." But I was cured. I might look sick, but I was cured. Stop thinking I'm gonna die! Now I'm back home and 2 hours after the Bleo shot, I started to feel extremely unwell, I vomited a lot!! At a certain point black pieces came out of my throat and yellow stuff so thick you could build a wall from it. I practically felt like my stomach was ripping apart. Christina was there, rubbing me on the back telling me it was going to be ok while I was vomiting, tears running over my face from the pain in my stomach.

I was really mean to her during chemo, and she took it all so well... I really love her to death. Later on I found out she cried a lot because I was so rude and mean to her. Christina had to leave right before my last Bleo shot. I got a bit sick again from the shot, but nothing like the one before.

I was done halfway through October... Finally done.... Down from 189lbs to 165lbs, which is still not skinny for a guy that is 5'10, but I lost a lot of muscle. But I don't really care, it's good to be alive.

CONCLUSION

I recovered pretty quickly All in all I thought it wasn't too bad, especially when I read some of the stories on this site. The day I write this is the 18th of April 2001. Currently I weigh 184 lbs, and I am doing pretty damn good.

Dr Nortier told me that my chance of recurrence is like 1%, so basically there isn't a chance, but you never know. I'm still always scared when I go to the hospital to get tested, but it gets less and less every time. I have some stains on my body from chemo though, but I'm used to them now. [Editor's note: Bleomycin can cause skin stains, especially if you scratch yourself during chemo.] I'm looking forward to get married and having some kids, but I'm not sure yet if I can. I know the story is kind of long, but it is hard to make it short.

Daniel

PS, you can e-mail me at cheese29@hotmail.com if you have any questions


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