In October 1979 I was on top of the world. I was 29 and had, a few months earlier, landed my dream job at CBS Radio in New York. My only worry was finding an affordable apartment in the city.
I traveled on business a lot and found myself in a hotel in Buffalo on a cold night. My plane was late so at about midnight I took a much needed hot shower. My left testicle felt different, it was heavy and a bit large. I felt a pulling and thought I probably had a hernia, something I had as a young child. When I got out of the shower my scrotum was thick and tight, not loose like the the normal reaction after a hot shower.
Like most young tigers I ignored it but vowed to have it checked soon. I was busy at work so a few days became a few weeks until the second week of December. I was standing in a colleagues office when a pain shot through my lower abdomen that took my breath away and forced me to sit. My colleague was concerned. I caught my breath and went back to work. I did however call my brother in law, an oncologist in private practice in Alexandria, VA and asked him what to do with this nasty hernia.
He was suspicious of my self diagnosis and told me to see a urologist. He didn't know any in NYC but thought that going to the CBS medical department or contacting our long time family physician in New Jersey would be a place to start. His one caution, do it right away because there was a small chance this was a mass and not something more routine.
The CBS medical folks gave me three names of urologists at NYU Medical Center in NYC. I didn't even know where the place was but they said it was a terrific facility and the place to go. On Monday, December 17, 1979, I set off for work and told my parents that I would be late because I was going to the company Christmas party. I might stay in the city overnight. I was right about where I would spend that night.
At 10 AM I saw Dr. Jordan Brown at NYU, a prominent urologist. He listened to my heart, my lungs, donned latex gloves and felt my testicle. Twenty seconds later he told me that he believed I had a tumor. What were the chances it was benign I asked? His reply, "Probably not, in a man your age it's almost always malignant. The good news is that we can treat this and cure it approaching 70 percent of the time." I gasped and said what's next? He said, "Get dressed, come into my office, and we will discuss the treatment." The problem was that he got a phone call from France and his receptionist, not knowing the diagnosis, told me to wait in the clinic waiting room. I paced for twenty minutes - an eternity.
When we sat down he explained the procedure for getting at the tumor, the familiar IO, and depending the results of pathology there might be a further surgery and possibly chemotherapy. He did say that it would be easier to take one step at a time.
I told him I wanted to be treated in New Jersey where my folks lived and that I wanted him to consult with my brother in law. He explained that my problem was rare and required the facilities of a large Medical Center such as NYU. If I chose a different facility or physician he strongly recommended Memorial Sloan Kettering Cancer Center.
When I suggested waiting until after the holidays, he got serious, (as if we had been kibitzing until then!). "Peter, I believe you have a malignancy and I would be derelict if I allowed you to wait. Besides, what kind of Christmas are you going to have trying to keep a secret like this? Whatever you do let's get busy."
I left his office, promising to talk to my brother-in-law and we would talk in about an hour. Out on 1st Avenue in NYC it was freezing. I was frantic and I couldn't find a cab. I walked a few blocks and spotted a driver getting out of his cab to get some coffee. He was an older Jewish guy, cigar in mouth, the kind of driver who knows the streets and the people who ride in his cab. Would he give me a ride uptown, I needed to get to my office fast? I hopped in and we drove, stuck in cross-town traffic all the way. Then he asked, "Are you OK, I saw you come out of NYU, a lot of people come out of there a little disoriented?"
Then I said it for the first time, "They think I have cancer." There it was out on the table. All I could do now was cry. We were a block away from CBS now, and the cab driver just drove me around the block a few times until I told him I was OK. I went to pay and he said, "Oh no, I can't accept your money. I will only pray for you. I am going to make sure I go to Temple tonight." The kindness of strangers long remembered.
When I got upstairs, I told my boss, who though stunned, was putting a positive spin on things. Whatever I needed, the company was behind me, just get better, your job will be here when you return. (Imagine a conversation like that in the work world of 1997).
I called my brother-in-law, Bob, went over the details and he reassured me that I would be OK. He wanted to talk to Dr. Brown, but said that he agreed with his assessment and plans for treatment. He would get back to me ASAP. Bob called back and after speaking to Dr. Brown and agreed with the treatment timing, etc. He told me that he had checked Brown out and found that he was one of the best surgeons in the City. A colleague in Virginia had studied at NYU and knew Brown.
Dr. Brown's office called and told me that they had a room for me because I would be classified as an emergency admission. Oh boy, a private room for free!
Then I made the call that I will remember and regret because of my directness to my dear, wonderful father. He worked at Sears in Hackensack, NJ. He had to be paged, and as I would learn years later, he took the call in the housewares department, standing up.
"Dad, I have a tumor", I blurted out, "in my testicle, call Bob, he knows all the details." I would be at NYU Medical Center and would he and Mom bring pajamas, slippers etc. Mom wasn't supposed to get emotional either. Stiff upper lip was required. And by the way don't tell anyone, its a secret. He was stunned, but I had to go. I then called my best friend who worked down the street and said, "I have a tumor, lets go to lunch". We met an hour later a La Bonne Soupe on Fifth Ave.
Bob brought along a friend, Jeffrey, a softball buddy, for support. We agreed soup, which I hate, would be the best thing for a young surgery patient. We ate soup and talked about pastrami and the fact that NYU was the best. Bob's Dad had a heart bypass there, probably the pastrami. My heart sank. I got in a cab. One good thing - they picked up the check. They would be by the hospital tomorrow with Pastrami and Cream soda, well maybe Wednesday.
Then I got to admitting at the hospital. The waiting area was jammed, probably fifty people waiting with numbers to be seen. They were tired cranky and wanting to get taken care of. Before I got my coat off a young clerk (pretty cute as I remember) was walking up the aisle paging a Mr. AAAAAAcquaviva. WOW...star treatment...I would show these ordinary folks just what a tumor can do to get you to the front of the line.
Don't worry we will get to the good stuff in installment number two, titled, "GET EVERY RESIDENT WHO HAS BEEN THROUGH UROLOGY IN NEW YORK CITY TO EXAMINE THE 29 YEAR OLD TESTICULAR IN ROOM 1316."
Then it began, an all points bulletin one week before Christmas, an interesting case for every resident, a non-seminomatous germ cell tumor.
Things began moving quickly now. It was afternoon and tests needed to be done in preparation for the next days IO, except I didn't realize that my testicle was going. I thought it was going to be exploratory until a resident, one of many who would examine me in the following hours, told me rather matter of factly that, "No, it was going, for better or worse". I was stunned but kept my composure.
Now we went for an IVP which is a X Ray series that examines the genitourinary system. In 1979 this was pretty routine. They shot what is called a reference shot and hung it on a screen for the radiologist who walked in and kept looking at the X Ray and then me over and over.
In her accented voice she asked if I had pain, I told her no and she seemed perplexed. Had I been medicated? NO. Then she said, "It's unusual for a patient with kidney stones to be in so little pain."
HOLY COW!!!I have a tumor and kidney stones?
She blushed and explained that the X Ray did not show that, and she just assumed that was what I was there for because ninety nine percent of people my age getting this study had kidney stones.
She visited several times during my stay at NYU and always apologized. She was quite kind and her special attention always made me feel more comfortable.
The next day I was taken to surgery early in the morning and asked what kind of anesthetic I wanted. A general was my response, I didn't want to be aware of what was going on. An IO is a short procedure, about 45 minutes to an hour, so I was back in recovery pretty soon.
My only problem was that I was conscious of everything going on but could not open my eyes. It was very weird. When I could finally see, the place was decorated for Christmas. My nurse was wonderful, and when her co-workers told her to go to the party, they would finish me, she insisted on staying with me. I really appreciated this kindness, it comforted me tremendously for many years.
The results of the pathology were as expected, embryonal carcinoma, with teratoma and, unfortunately, some choriocarcinoma components.
Next step was to get my strength up for the RPLND. Christmas was a week away so the decision was made to stay as an inpatient and do the dissection on the day after Christmas. Oh wow, what a Christmas present.
I was on a urology floor, so for the most part the patients were older men with prostate problems. The presence of a younger man, and one with a malignancy touched the staff. I received special attention from the nursing staff. By the time I was discharged three weeks later I would be friends with many of them.
The waiting around was tough, a steady stream of visitors, all with presents, came and went. Maybe the staff loved me for all the food that an Italian family brings to their ailing members.
On Christmas night the preparations began for the next days surgery. Central lines went in, purges of my bowels, and a second CT scan. The first had shown some suspicious nodes in the retroperitoneum. This scan confirmed the first.
December 26, 1979 was a day I won't soon forget. It started early and ended in a haze of morphine and a tangle of tubes that those who have had major abdominal surgery can related to.
It is this recovery process that is so difficult, but each day brings new strength and less pain. After I was moved from a post op room on day two, the tubes came out one at a time until I was alone in a semi-private room wondering if I had been cheated at a young age. My self pity deepened when Dr. Brown confirmed that the disease had spread to two lymph nodes and chemotherapy would be necessary, something my oncologist brother in law also agreed with. The chorio component of my tumor troubled both of them.
Around day five or six my isolation would end with the arrival of a roommate. I don't remember his name but to this day he inspires me.
He was a twenty three year old architect who became paralyzed from the waist down in an auto accident while on vacation in Great Britain. He was at NYU to receive surgery and rehabilitation, both a specialty of the Center. He was unstoppable and always optimistic. He got me out of bed and we went exploring. Most of all he made me realize what life really meant. In the end I would be fine, he would always be in that chair. God Bless him.
I finally discharged on January 6th, 1980 with instructions to rest and prepare for chemo in about six to eight weeks. [Editor's note: These days Peter may have gone right to chemo, without stopping at surgery. He certainly could have started chemo sooner than 6-8 weeks, and he would have received a lot less chemo than he did.]
Because of the chorio component in my tumor, I was referred to Dr. Alan Yagoda at Memorial Sloan Kettering Cancer Center. He was (he passed away two years ago) among the best in the world, I was told, and he and the team at Memorial were best suited to handle my case.
I walked through the doors at Memorial and for the first time faced head on the reality of what I had, cancer. There are few patients at Memorial who do not have cancer, so for the first time I could not hide from my illness.
That first visit was a blur but the treatment was laid out...I would be on the VAB VI protocol, an experimental protocol which shortened the length of chemo from two years to one. Three induction courses roughly one month apart on an inpatient basis with a combination of Cisplatin, Bleomycin, Actinomycin, Velban and Cytoxin. Followed by outpatient treatments, every three weeks for nine months with Velban and Actinomycin.
More important than the technical aspects of the treatment was the beginning of my true healing, by dealing with what had happened to me and how my life would change and how I would change. Also what began was a life long relationship with a medical institution and its people MSKCC. They're caring and knowledge comfort me to this day.
In 1979 Cisplatin was fairly new and experimental. Early results provided a turn around in the cure rates for TC. What doctors were doing then was refining the protocols. Reducing the length of treatment to one year from two was huge. What was not so well developed were antiemetics. What is most vivid about my chemo was the vomiting, not nausea, vomiting. Years later after Dr. Yagoda moved on, my present oncologist, Dean Bajorin told me that antiemetics today almost completely eliminate vomiting. I told him I didn't want to know that...I wanted to believe everyone was getting as sick as I did.
Just before Christmas of 1997 I saw Dr. Bajorin and was given a clean bill of health. To quote him, "you have never been healthier." It's wonderful to hear those words coming from a Doctor at Memorial. He was particularly pleased that I lost nearly eighty pounds since I had last seen him. At first when he saw my chart he was worried until I told him that I went on a diet because I had become obese over the years. I have struggled with my weight over the years going up and down. Four years ago I suffered a ventral hernia which caused a bowel obstruction because of my weight. For anyone having abdominal surgery like a RPLND this is a danger. The recovery from the surgical repair is exactly the same as that for RPLND, NG tube and all. Over the years I had recurrent dreams about having to go through a second RPLND, not a happy thought. Well the dream came true in a manner of speaking. After all I had been through I had become complacent. Shame on me...
In 1981 I finished Chemo and met the woman who would become my wife...yes there is life after TC...and in 1987 we had a son...thank you lord for all your gifts.
Around the holidays in 1997 I began poking around the web and found the TCRC... hooray for technology. In 1979 your only sources of information were medical libraries, your doctor, and your comrades with the disease. I have been fortunate because Memorial is a leader in the field and because my brother in law is an oncologist. I could always call him and get the answers I needed. Today everyone can tap almost limitless resources at the click of a mouse.
I decided to share my story and participate in this forum because as I read more of the postings on TC-NET and TCRC, I thought I could bring a dimension that only time can bring, and that is a long term perspective. So many of the participants are just beginning the struggle, and though reassurance comes with the sharing of stories, what is often tucked away or repressed is that question of will I survive? No amount of discussion about cell types, tumor markers, chemo protocols and CT scans can really answer that fundamental question.
Eighteen years is a long time... in fact I unfortunately have seen several of my friends die since my struggle who were healthy. I even outlived my oncologist, Alan Yagoda.
All of this would not have been possible without some pretty incredible people...they are...my family, particularly my parents who have lived this struggle with me through tears and cheers...Jordan Brown, MD, urologist extraordinaire, Alan Yagoda, MD (god rest his soul), Dean Bajorin, MD and most particularly Robert F. Dobrzynski, MD of Alexandria, VA, (oncologist extraordinaire) who guided me through this labyrinth of medicine and recovery, thank you Bob...if you live in Northern VA he is your man, believe me...and finally all the incredible medical professionals at NYU Medical Center and Memorial Sloan Kettering Cancer Center in New York City....