Mitch's Testicular Cancer Story...
Written by Mitch
(Originally posted in 2003, updated in March 2008)
When I was 22, my sister (26) was diagnosed with germ-cell ovarian cancer. We were told there are many different kinds of ovarian cancer and this was the "best one" to have because it was curable. The cure was a regimen of chemotherapy that lasted three cycles of drugs called Bleomycin, Etoposide, and Cisplatin. This regimen was actually borrowed from the treatment of testicular cancer developed in the early 80s that has been so successful. It was a trying and scary time for my family, but after some baldness, lots of nausea and exhaustion, my sister was indeed cured. In fact, she gave birth to a healthy boy less than 2 years later and is currently expecting another boy in October 2003. UPDATE: She had a second healthy boy in September 2003, and a healthy girl in January 2007.
Summer 2002. Life was perfect. I was entering my final year of law school. I was recently selected to be an editor of the Law Review. Had a great job lined up for after school. I was in New York for the summer near my family; working on interesting legal matters for a great law firm; seeing old friends; meeting new ones; and overall on top of the world.
Then one day I woke up and felt a dull ache in my groin. I thought I just strained a muscle. In a couple of days it went away…and then it came back. I did a self-exam in the shower (as I have done for years). I felt a hard marble on the front of my testicle and I knew what it was. Being a sports fan, I remember when John Kruk was diagnosed, and Mike Lowell, and of course, Lance Armstrong.
I knew I could not mess around. I made an appointment with the urologist. The couple of days before I went, I researched the disease and was completely prepared for what the doctor was going to tell me. Except of course, you can never really be prepared for something like this.
After the exam, the doctor told me there was a mass in my left testicle that was "suspicious." "SUSPICIOUS!?!," I said, "It's not 'suspicious.' It's cancer! What do I do now?" I didn't mean to lash out at him, and I understand he was trying to break the news gently to me, but that wasn't what interested me. I wanted to know how quickly I would be able to beat this thing and go to DC for work. It was July 29; I was supposed to be in DC August 5th for another job, and back in Chicago for the start of Law Review by August 28th. I just didn't have time for cancer.
The doctor sent me for an ultrasound and drew blood. I called my family and told them that I had testicular cancer and needed surgery. Certainly this was the hardest thing I ever had to do. It made me really understand the difficulty that doctors must have telling someone the news.
That day was crazy as I was dealing with Law Review conference calls (we were selecting the new members that very evening), speaking with the summer coordinators at the law firm where I was working (the entire firm was amazing throughout my entire ordeal), and figuring out my schedule for the rest of the summer. I also had to tell my girlfriend — not exactly a pleasant conversation.
My sister contacted her oncologist, who recommended a surgeon from whom to get a second opinion, and who would end up doing the surgery. He confirmed what the first doctor said, and I scheduled the surgery for the following Monday. He also sent me for a CT Scan to determine if the cancer had spread anywhere else in my body.
I had to look at myself in the mirror and say, "Mitch, you have testicular cancer," until I actually believed it. Once I literally faced reality, I was ready.
Surgery #1: The Orchiectomy
Physically, the surgery isn't as scary as it may seem. They basically make the same kind of cut as if it were a hernia operation — a small, 2–3 inch incision right above the bikini line. Psychologically, it is terrifying. I began reading other TC patients' stories. It seems like many men who have gone through this have a great sense of humor about their predicament. I remember watching Tom Green's MTV special about his ordeal. There was the story about the guy whose friends began to call him "Mounds." (Instead of Almond Joy.) My favorite story is about former Philadelphia Phillies first baseman John Kruk that I read on the TC Resource Center:
"Because he was still undergoing treatment and was admittedly very tired, the Phillies did not want him to play until completely recovered. Kruk, a fierce competitor complemented by one of the best public senses of humor, was outwardly critical of the Phillies position. The day before the home opener he was seen taking batting practice wearing a t-shirt that read: [Front] If you don't let me play... [Back] I'm going to take my ball and go home."
So I decided that I needed to lighten up a bit. I mean, it's surgery, and it's not exactly the best predicament in the world, but I had to get past the self-pity.
I had decided that I was going to have a prosthetic implant. When I walked into the OR for the surgery, I asked my doctor what the prosthetic was made of. He responded that it was a saline mixture. I asked if they could put metal in it. He looked at me like I was crazy, so I said, "This way, when I tell people not to [mess] with me because I've got balls of steel, I'll be half right." He laughed and I knew I would be fine.
The surgery lasted about one hour. When I woke up I was a little sore, but not too bad. I was very thirsty and the nurses gave me the best apple juice I have ever tasted. I was a little nauseated, but they gave me some meds for it. I was released from the hospital later that day. The next week was spent in anticipation. The pathology would show if there had been any invasion to the rest of body, and would show the type of cancer cells.
The results of the pathology came back, and it was non-seminoma. The initial reading (done by the surgeon's radiologist) also showed that there had been little-to-no invasion to my abdominal lymph nodes (they were 2 1⁄2 cm instead of less than 1 cm). I would probably need the RPLND. My surgeon referred me to Dr. George Bosl at Memorial Sloan-Kettering Cancer Center in New York.
Before going to Dr. Bosl, I decided to bank sperm. The treatments could affect fertility, so I wanted to be safe. Let's just say that going to a sperm bank is one of the oddest experiences I have encountered. The place was very private — they did it by appointment and so I did not see any other customers and no other customers saw me. Then I filled out lots of paperwork. My advice is to read all of this or bring someone with you to read it. It is very complicated and you really want to understand what is going on.
Then, I was taken on a "tour" of facility, which culminated with a tour of the "staging room." There was a large leather chair (there was NO WAY, I was going to sit on it), a sink, a counter that contained a specimen jar and lubricant, a TV/VCR with many videos, and a stack of magazines. The manager closed the door and I was left to do my business. So there I was in the room and I knew that in the waiting area, the manager, my dad, and the receptionist were waiting. The first time was very stressful, but the next two (they recommend banking three times) were quite comical. There is a musical about Testicular Cancer called Turning Thirty by Tom Willner that has a very funny song called "Masturbating in a Cup."
So, anyway…I met with Dr. Bosl and he informed me that the invasion was more than the other surgeon had thought (one example of why it is so important to go to an expert like Dr. Bosl and get second opinions). My lymph nodes were actually 7 1⁄2 cm and I would not be a candidate for the lymph node dissection until they shrunk. I needed to start chemotherapy immediately. I was given the choice of 3 cycles of the BEP that my sister had gone through, or 4 cycles without the Bleomycin. The Bleo was considered the most toxic drug and it really made her feel awful. I opted for the four-cycle plan. Each cycle would be five days of intravenous therapy followed by two weeks of rest. Fortunately, Dr. Bosl had a colleague whom he respected greatly in Chicago. Dr. Bosl would contact Dr. Vogelzang who would take over my case while I went to school.
Waging the War
I contemplated calling the Editor-in-Chief of the journal to resign my position on the Law Review. I thought I would be too tired and would be a burden on the rest of the board. I spoke to the EIC briefly about this, but he assured me that any slack could and would be picked up. I was still concerned. We were publishing a special issue that would already take extra effort from everyone.
I did some soul searching and I decided that I was fighting a war. The cancer had invaded my body, but the war would be fought on three fronts: the physical, emotional, and psychological. I could not give in on any front. I had to live my life and not let the cancer stop me from doing anything. I was going to take a full load of classes, keep my position on the Law Review, and beat cancer. It would be hard, but I would win.
But first I needed a uniform — a green camouflage bandana. And a mascot — my friend got me a stuffed bear with the words "Cancer Sucks" written across his chest (available at KibbyBears.com). I wore my battle attire and brought my mascot to every chemo treatment. I shaved my head before my treatment began and I was ready.
I did my first round of chemo in New York and then the next three in Chicago. My parents came with me to all of my treatments. In New York, we watched movies, ate lunch, and talked. Fortunately, I didn't have much nausea. I was extremely tired over the weekend, but all in all, it was rather uneventful. In the world of chemo, uneventful is perfection.
Chemo in Chicago
Going back to school was scary. Many people knew what I was going through, but many did not. I did not want to be "that guy" who people spoke about in hushed tones. I was also nervous of what the chemo center would be like in Chicago. But, my dad was going to fly out to Chicago to be with me during my treatments.
I walked into the chemo room for the first day of my second cycle and met the woman who would be my angel, Sharon. Our first meeting, however, wasn't the best. I had a blood test in the morning (as I did every Monday of my chemo weeks, to check my white blood count). The test showed that my white count was too low to get chemo. It seemed like another setback. I had mentally prepared myself and pumped myself up to get my chemo, and so it felt like a letdown. I would have to change my cycles and take three weeks off in between cycles in order to let my white count build up. If, after three weeks the count did not reach an acceptable level, I would have to get a shot to help my body produce the cells. Moreover, this cancer thing was going to take longer than expected.
The next day was the one-year anniversary of September 11. Initially, I was going to miss all of the remembrances because I would be in chemo, but that was no longer the case. After attending a tribute at my school for the victims of 9/11, my Dad and I decided to do something very American. So we went to Wrigley Field to watch the Cubs. Baseball is still the greatest game and an amazing way to spend a few hours, especially when you can enjoy it with your father. I recall how baseball helped heal New York in 2001, and I believe that in 2002, it helped heal me.
The following week I returned to the chemo center and received my treatments — as I would for the next couple of months. Besides Sharon, my main nurses were Mary and Sarah. We had lots of time to chat and get to know them. I'm not exactly sure how to express my gratitude to these amazing women. They made chemo a positive experience. They are extremely skillful, knowledgeable, friendly, and calming. They do their jobs with such care and love that their spirits help people beat cancer as much as the chemo does.
Throughout the quarter, I also realized the beauty of my school and my friends. My professors were extremely understanding and supportive. Classmates offered to do everything in the world you could imagine — driving me places, taking notes for me, doing laundry, shopping, cooking, making me laugh, knitting me hats, etc. The administrators of the school did everything possible to make things easier for me. I had friends from undergrad fly from all over the country to Chicago to hang out with me just to make sure I was all right. Family and friends are so important during cancer treatment, as is staying "normal." During my treatment, I still went to hockey games, the opera, flew to NY for my sister's 30 birthday, and sort of lived my life.
In addition, every couple of days I would read some of the online stories of people who had TC, or read some of the posts on cancer message boards. I never posted, but it helped so much to hear about the ways in which others were coping.
I had a post-chemo CT Scan in Chicago, but had to wait a week before coming to NY for my appointment with Dr. Bosl. When he had initially seen me, he showed me where the enlarged lymph nodes were on the scan. Since I had the new scans, I decided that I would be able to determine if those lymph nodes in fact had shrunk or were still enlarged. In other words, whether the chemo had worked. I found the sheet that showed my abdomen and found the area with the enlarged nodes. What I saw looked like they were still enlarged. I was freaking out. I thought I was going to have to go through high-dose chemotherapy.
I went to Dr. Bosl and he said that the chemo worked perfectly and my nodes looked about normal. I asked him if he was sure, that when I looked it seemed like there was something there. OK, so get the ridiculousness of the situation: Here I was, after zero days of Medical School, telling the world expert that I was questioning his diagnosis. It turns out I was looking at the scans backwards. I think I will stick to law.
So now that the scans and blood tests came back negative, there was an 80 percent chance that I was in complete remission. But there was a 20 percent chance that there was still a microscopic teratoma or live cancer. I could have the RPLND to determine if there was still cancer (if there was, then I would need more chemo), or I could go on a very strict surveillance program.
My mother put the numbers in an interesting way. 20 percent or 1 in 5 is like Russian Roulette. Would I be willing to play that potentially deadly game? So I met with the world expert Dr. Sheinfeld to schedule the RPLND.
I finished my finals, and three days later I was in the hospital for my operation. I arrived for the surgery early in the morning and was quite nervous. I had my bandana, and mascot in hand. I walked into the OR and there was a large team ready for me. I remember waking up after the surgery and seeing Dr. Sheinfeld, who told me everything went well. He was able to do a complete cancer surgery and perform the nerve-sparing technique.
The next couple of days are a blur with images popping in and out. A couple of friends came to see me, but I was rather delirious on morphine. I was given a button for self-administered morphine. I guess I was a bit out of it because anytime someone spoke to me, or I moved, or I spoke, I felt the need to push the button. I wasn't in pain, but there was a button to push, so I pushed it. Needless to say, they took the button out of my hands so I actually had to reach for it if I was in pain.
During my third night, I started to run a high fever (104). I was given a transfusion and after a stressful night (a night that my dad considers the worst, but one I hardly remember), my temperature began to come back to normal. In the hospital, I did a lot of walking, sleeping, and waiting for the pathology results.
On the morning of December 26, Dr. Tash (one of Dr. Sheinfeld's amazing fellows), came into my room, and woke me up to tell me that the pathology came back completely negative. I had no cancer. I didn't really understand what she was saying. In that moment, I went from cancer patient to cancer survivor. Since I had been on so much morphine I asked her if I was actually hearing what she said. I also asked her to write it down and tell a couple of the nurses in case I went back to sleep and thought our conversation was a dream.
It was no dream; it was an amazing reality. In a couple of days I was released from the hospital, still sore, and on Dr. Sheinfeld's 5 grams-of-fat-or-less a day diet. I spent a marvelous New Year's Eve with my family.
I actually found survivorship a bit difficult. For six months, so much of my life was about cancer. You always read these stories about people who learn so much about themselves and the value of life through cancer. I was waiting to smell a flower and magically realize the power of life. I was looking to rediscover the beauty of the world. I was searching for that spiritual moment where I discovered the meaning of life. None of this happened and I was getting frustrated. My hair was coming back, my soreness was starting to go away, but something was missing. I felt like an idiot.
I slowly realized that I needed to get back to being myself. I needed to stop defining myself simply as a cancer survivor. Sure that was part of me, but that wasn't the complete me. As I wrote in an article that I submitted to the law school newspaper: "We all have our problems and obstacles to overcome. Mine happened to be cancer this year. I don't mean to minimize it. After all, for anyone who has gone through it, cancer is one tough enemy. But, I have my life to live. I have places to go, people to meet, relationships to establish, and yes, flowers to smell."
So I go to my doctors for blood tests and chest x-rays. I stop in to see my nurses when I can. I am back to playing softball, competing in fantasy sports, worrying about the minutia of life, arguing about politics, and living life. I still have my daily reminder of my cancer war when I look down at my abdomen to my large scar. Some of my friends still call me the BOS (Ball of Steel). And I try to spread the word for men to do monthly self-exams.
But the bottom line is that once again, life is perfect — because I am living it.
The doctors were and are still baffled that my sister and I both had the same basic kind of cancer (germ cell). TC is not thought to be genetically linked. We are participating in a study to try to determine if that is accurate. Either it is genetically linked, or our parents should play the lotto because they are due for some really good luck.
If you have any questions, please feel free to contact me on the TC-Cancer.com Message Board (Mitch).
Well, it has been five years since I was declared cancer-free. Life is great. I now see the doctors once a year. I am healthy and in the best physical condition of my life. My scar has faded, and finally days go by without cancer being on my brain. The Cancer Sucks bear still sits proudly on the shelf, and the green banana hangs in triumph. My sister and I still participate in the genetic study, but we haven't heard anything yet. Her two young sons will certainly be instructed on self-exams as they get older.
I have met many men who have gone through TC. I told a co-worker about my experience with TC and emphasized the need to do self-exams. The next day he asked me for a referral to a doctor. Fortunately, he was able to catch it early and did a couple of rounds of preventative chemo followed by strict surveillance. We have become great friends, and he is completely healthy.
The first time I read the message board on this site was when I was in the hospital recovering from my RPLND. For a long time I was a regular contributor. It was very therapeutic and I met some wonderful people. Then it was time to move on and let others find the therapy in assisting those going through TC. I still pop in from time to time, and while the names have changed, the care and wisdom of the board remains. I thank you all for keeping this going — thanks to Scott and Teri and Niki and TCMom (the first user whose posts I read in the hospital). And especially thank you James.
ALSO VISIT OUR ONLINE SUPPORT FORUMS WHERE YOU CAN INTERACT WITH HUNDREDS OF OTHER ACTIVE MEMBERS!