December 24, 2001

Mike's TC story

My name is Mike, and I'm from Philadelphia. I was 28 (April 2000) when I found out that I had an Extragonadal Germ Cell Tumor.

It all started with an annoying cough, which I ignored. I had the cough for about three months and never went to see a doctor (big mistake). Finally one night I felt really bad cramps in my chest and had problems breathing. The next day my chest was still bothering me so I made an appointment with my family doctor. He told me to get a chest x-ray and take antibiotics. He thought I might have pneumonia.

The chest X-ray came back and he didn't like what he saw, so he sent me for CAT scan. The scan came back and that's when the bad news started. He sent me to an oncologist and said I might have lymphoma. This was all Greek to me, and I had no idea what he was talking about. When he told me it could be cancer I almost hit the floor.

I went to see the oncologist, and he said that the CAT Scan showed that I had a tumor between my heart and lungs the size of a grapefruit. He couldn't say whether it was cancer or not until he did blood work. The blood work came back 3 days later and he confirmed the tumor was cancerous and that I had a germ cell tumor. My HCG was 640 and my AFP was1650, both should be below 8. My life changed forever from that day forward.

He was pretty straightforward and told me that because the tumor started in the mediastinum and not the testicle, I was poor prognosis (around 40% survival). He wanted to start chemo as soon as possible, and he gave me the option to get in a clinical trial study for high dose chemo and a computer would pick if I got high dose or standard therapy. I got in the study and was picked for standard therapy.

I would start chemo (4 cycles of BEP) at the University of Pennsylvania over Memorial Day weekend. They started me as an inpatient just to see how my body would react. Each cycle was 6 hours a day for 5 days then 2 weeks off. The first cycle was no problem. Then after about a week the nausea started and no food looked good to me.

After about 3 weeks I lost my hair (thank god for baseball hats). The chemo lasted all summer and so did the nausea, but I didn't mind too much because the chemo was working. My levels were slowly dropping.

After the 4th cycle my bHCG was normal and my AFP was at 12. They decided it was time to remove the tumor. I was scheduled for surgery Labor Day Weekend at the University of Pennsylvania. They opened my chest and removed the tumor.

Unfortunately, the pathology report on the tumor showed that there was still a little cancer left in the tumor so my doctor decided on 2 more cycles of chemo just to be safe. Not really what I wanted to hear, especially because my hair was just starting to come back. Not to mention I really didn't like chemo, but I made it this far I wasn't going to give up now.

They gave me 2 cycles and I finished the chemo on Oct 20 2000, a date I'll never forget. It's been 16 months now and I'm still cancer free!! I get blood work every 2 months and CAT scans every 4.

I would just like to thank all my family, friends, chemo nurses, Dr. Perry and God for helping me through the toughest time of my life. Without their support I probably would of given up hope. They were always there when I needed them most.

If you'd like to talk with me about my experience, please feel free to send me an email.


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