Ari's TC story

Things got started in the early months of 1996. I was 30 years old, married with no children. I had never had a serious illness in my life and rode my bike to work pretty regularly keeping me in somewhat decent shape. All was well, other than this slight tenderness in my left testicle. But it didn't really stop me from doing anything and I figured whatever the tenderness was would just eventually disappear much like every other little ache and pain always did. While I was entering my 4th decade of life, my mindset was very much like a teen who believes that they're invulnerable. If I just ignored this, it would surely go away. I had never heard of testicular cancer or a TSE (testicular-self exam) and the thought of this being a real problem never entered my mind.

Well, unlike other aches and pains, this one didn't go away. Finally a couple of months later in May I told my partner, Yaya, about this. Here's where the story gets an R-rating--she had a feel as well and told me that yes, there was in fact a lump on the testicle and the lump felt a little like a hard-boiled-egg. Well, now that I'd shared this with somebody else, I couldn't ignore it any more and at Yaya's suggestion, off I went along with my hard-boiled lump to my GP.

At this point everything happened rather quickly. Fortunately, I had a pretty sharp GP and he ordered an ultrasound right away because "it might be cancer". So I went for the ultrasound the next day and the doctor called me at work telling me that although the radiologist hadn't seen it yet, the technician believed it was a cyst, so not to worry. I later got called back by the doctors office and found out that this was likely in fact a solid tumor and not a cyst. I was told however that it was not necessarily cancerous. What the doctor failed to tell me--and perhaps did not know himself-- was that 95% of solid testicular tumors are malignant.

He referred me then to a urologist at the Toronto General Hospital and an appointment was set with him. It seems however, that the hospital has its own particular standards regarding ultrasounds and so I got a second ultrasound before meeting the urologist. At this point, I still believed that it may not be cancerous. This ultrasound seemed to take twice as long and was more thorough. I knew something was up when the technician called in a few other people to look at the screen. From there I went to meet the urologist. It was only then that I was told that the testicle must be removed. So I booked my orchiectomy for 2 weeks later. I also ended up having blood drawn a number of times, I'm not quite sure how many and I'm not quite sure why so many. The purpose of the blood work was to read tumor markers which all turned out negative.

I did not have a great deal of information at the time regarding testicular cancer and the urologist did not provide a great amount of information and so I ended up calling him as I thought of more and more questions. Why did they have to remove the whole testicle? Why couldn't they just biopsy the tumor? Well, these questions were eventually answered and I also managed to get some info over the net, although TCRC was not yet in existence.

Two weeks later I had a radical inguinal orchiectomy and my left testicle was removed through the inguinal muscle. I had been scheduled to stay in the hospital 2 nights but after one night the doctors decided I should leave that day. I wasn't the quickest healer and still had difficulty walking. I persuaded them to let me stay one more night. Probably a big mistake. I now really believe hospitals are no place for sick people. I got a roommate that night, an elderly gentleman who had relatively intrusive surgery and had all sorts of tubes sticking out of him. All night long he kept trying to get up and I kept calling the nurse in to put him back to bed. Eventually the nurse stopped coming and I became his nurse as I limped over to his bed on one or 2 occasions.

I spent 2 more days at home before returning to work. I did not know the results of the pathology report yet although my urologist informed me that he believed it was probably a pure seminoma. At the time I didn't know how he knew. In hindsight, I realize that the results of the blood tests showed no elevated tumor markers. This would only be true in a pure seminoma. So I sat at home a couple of days limping around and entertaining visitors. I was having a ball although sometimes I felt a little testy. Needless to say, my visitors and well-wishers soon got tired of my puns as did my colleagues at work.

One week later I had my staples removed and my first appointment with my radiation oncologist at The Princess Margaret Hospital, a regional cancer centre right across the road from where my nut was removed. He confirmed that it was a pure seminoma and I had my first CT-scan and chest X-ray as well. I asked about possible problems that might be correlated with testicular cancer and was told that higher incidences of sterility have been noted. I had not been in any rush to have babies until I heard that this might be an issue. So off I went to get my sperm tested and happily found out that my boys could still swim. I also found out all I could about seminoma and was quite happy to learn that I had a "good" cancer with an excellent cure rate.

A week later I met again with the radiation oncologist. By this time, I was back on my bike again and rode down to the appointment. The CT-scan and chest X-ray were both negative, meaning that it appeared there was no spread beyond the plumbing that was already removed. So I was offered a choice. I could either be treated with 2500 rads of radiation now and if there were any microscopic cancer cells still floating around in my abdomen, the radiation would kill them, or I could just be monitored and go on a surveillance protocol.

If I chose the radiation, odds were about 99% that this would be the end of my experience with seminoma. Seminoma spreads very slowly along a very predictable path and is highly sensitive to radiation. However, if I did take the radiation, there was a 15-20% chance that I would be exposing my body to radiation needlessly. On the other hand, if I chose surveillance, this meant there was this 15-20% chance that there were still microscopic cancer cells floating around my body that may later show up-likely in my abdominal lymph nodes- and then I would need more radiation at that time. And I definitely needed to attend all of my follow-up appointments. Either way, the prognosis was excellent and the cure rate was the same-something like 95-98%.

Surprisingly, the choice was a relatively easy one for me to make. I chose surveillance. I figured why expose my body to radiation if chances were 85% that it was unnecessary? And while this was considered "low dose" radiation, it was still radiation. My philosophy was "least intrusive measures" and I knew that I was the kind of person who would attend all of my follow-up appointments. I also knew that I would be able to tolerate not knowing 100% that the cancer was gone and that perhaps some cancer cells were still floating around.

And so I was provided my surveillance schedule:

Fast forward three years. It's now May 1999, just prior to my 34th birthday and I find myself lying on a slab-like bed beneath a machine that is about to radiate my abdomen, struggling at fitting my remaining testicle in a protective lead shield to protect it from possible scatter radiation. This is my first treatment and I will be doing this 24 more times.

Backtrack a few months to February 1999. I've been on a surveillance protocol at the Princess Margaret Hospital for 2 1/2 years now. TC is not so much on my mind any more. I'm beyond 2 years of surveillance and when asked about my health I sound kind of ballsy in saying that I probably don't have anything to worry about any more...maybe I'm a little too cocky! Nine days after a regular CT scan I receive a phone call from my radiation oncologist while at work. Turns out a lymph node in my para-aortic artery has grown from 2mm in October to 9 mm now. I've had a phone call like this once before in June 1997 and it turned out to be nothing. At that time, I went for a few more CT scans every 6 weeks after that and the node hadn't grown any more. False alarm. But I've now been transferred to a new oncologist and I figure it's probably the same node. Wrong! It's a new one and they want to re-schedule another CT-scan for April instead of my regular June check-up. If it grows more, they'll assume it's the seminoma back again.

Meanwhile, there's been other changes in my life. Bought a house and we're expecting our first child early April- a few weeks before my next scheduled CT-scan. Life insurance becomes an issue. I've received a "med rating" because of the seminoma which makes life insurance a whole lot more expensive. Fortunately, our agent works a deal for us that we could afford. That is until the insurance company got wind of the news that I have this new "suspicious" lymph node. So that deal goes into the toilet.

April 6 comes along and Yaya gives birth to our little baby boy-a wonderful home birth-and all thoughts of CT-scans, lymph nodes, cancer and radiation are distant from my mind as his little formed body enters the world...until the midwife does her baby check. "How's his testicles?" I ask. "Both descended?"

A couple of weeks later, I'm off for my CT-scan. A week later, I get the results. Turns out the node in question has now grown again to 1.5 cm. I am told there is not really any point in doing what is called a "fine needle biopsy". They occasionally yield false negatives and then we're no further ahead. This node is right in the location where the seminoma would recur and it has continued to grow since October. So I agreed to begin radiation treatments. I had been somewhat concerned that I might need to be shipped down to Buffalo, NY to get treatments. There has been a shortage of radiation therapists in Ontario due to poor planning and the newspapers were full of stories of women with breast cancer who needed to be treated in Buffalo, Detroit or Cleveland. I didn't want to be away from my family at this time. Fortunately, I didn't have to worry about that. I was to be treated at the hospital here- a 10 minute bike ride from work and a 25-minute bike ride from home.

So in the beginning of May I went for my simulation. I laid down on a slab of bed while they X-rayed me and plotted out where the radiation would be aimed. By the end of the approximately 1 hour simulation, my torso looked like a blueprint with X's and marker lines and measurements all over. At the very end, I was given 5 small blue tattoos. I had hoped to have one of an eagle or an anchor, but they seemed to like the practically invisible blue dot theme. These tattoos were at various locations on my abdomen and pelvis and were used to direct where the radiation would go. The tattoos were painless, by the way. A small pinprick and then an inkblot.

The next day I went in for a scheduled CT-scan. This was not a diagnostic scan, but rather just to locate my kidneys so that when I got nuked, they could make correct size shields so that my kidneys would not get cooked. After this, I embarked on the most surrealistic part of this adventure--banking sperm. My doctor recommended that I do this even though there would likely be no permanent damage to my sperm...just temporarily irradiated. Better safe than sorry however as we didn't want to eliminate the possibility of having more children.

The hospital had a sperm bank and I was to make 3 "deposits" in one week. I wasn't really sure what this would be like aside from having to shell out $500.00 and fill in a bunch of forms. Well, it was kind of just like in the movies. I got led down the hospital hallway to a room which was where I was to make my "deposit" into a little jar. This room came complete with Playboy, Penthouse and various other nudie magazines. It was during this week that I discovered that my mind no longer operated like an adolescent and the magazines just didn't have the same impact as they did 15 years ago. I successfully took matters into my own hands and made my deposits with the hope that I would never need to make any withdrawals. At the end, I met with a nurse at the fertility clinic and we discussed my sperm quality, how it froze, and future possibilities including in vitro if necessary. It was a fascinating discussion learning all about my sperm quality which turned out to be not so bad. But I had never put myself into the category of somebody who would be talking about artificial insemination.

My first radiation treatment was scheduled for a week later in mid-May. My plan was to work through treatments as it was my understanding that this was considered "low dose radiation" and, with enough rest, I should be able to continue life relatively normally. The doctor told me that I was receiving a total of 3500 rads (or centigrays), roughly 1/2 the dose that prostate cancer patients receive. 2500 rads were to be delivered to much of my abdomen, while the 1000 rad "boost" would be directed at the small area around the enlarged lymph node. This would be a total of 1000 rads more than I would have received had I decided on radiation 3 years earlier instead of surveillance. My doctor let me know that, yes, I could still keep cycling to work and just continue my routine as much as normal. Some side effects may be: fatigue, nausea, diarrhea, slight "sunburn" to the abdomen and some localized hair loss.

Response from friends, family, co-workers was incredibly supportive. Now, in my mind I knew this was not a life or death issue. Serious, yes, but something that would likely be over and done with once treatments were done. The prognosis remained excellent and I had benefit of knowledge having been following discussion on TC-NET for the past 3 years and aware of other similar TC stories. For me it was a recurrence of seminoma in my abdomen, still a highly curable cancer. But those around me just knew I had a recurrence of CANCER!!! I often found myself in the position of explaining this to others and I'm sure I was seen as minimizing my situation. Once I started treatments, my colleagues thought it was somewhat bizarre that I would cycle to work, cycle to my CANCER TREATMENT in the middle of the day and then ride back to work and ride home.

Unfortunately, the hospital could not give me the same appointment time every day. They were willing to give me a weekly schedule so that I could plan work around it, but occasionally appointment times would change for the next day, leaving me to juggle my work related appointments. I electronically checked myself in daily, changed into one of those stunning hospital gowns and waited my turn to be nuked. The radiation therapists were very nice and I found them to be more knowledgeable than my doctor regarding coping with the radiation.

The first challenge was dealing with that shield (or clamshell) for my remaining testicle. This was essentially a hollowed out lead ball cut in 1/2 horizontally in the middle. The testicle lies in the lower 1/2 and the upper 1/2 gets placed over the testicle. There is a gap cut out such that you don't squeeze or pinch anything. This lead ball rests on a mechanism which can raise or lower it to the appropriate height. What I very soon learned was that my testicle sat at a different height sitting up (when I positioned it in there) than lying down, and everything would need to be readjusted. So after a few days of struggling with this, I took the radiation therapists up on their offer for them to place the testicle in for me. This turned out not to be a great solution either and so I learned to place my testicle in the shield while lying down. This was an achievement worthy of resume material. Under my "Summary of Skills" section, I can now write that I can proficiently place my testicle in a lead shield while lying down and blindfolded. (I wasn't blindfolded, but I bet I could do it blindfolded).

The treatments itself did not last very long--except for the first day. The machine broke down while I was lying on it. H'mmm...a NUCLEAR machine broke down. Didn't leave me with a whole lot of confidence. All I could think of was phrases like "melt-down", "China Syndrome" and "We've got to eject the warp-core captain". Fortunately, the break downs on these machines are all mechanical. So there I was lying on the machine with my lovely hospital gown wide open with a lead ball mechanism sticking up out of my crotch while the electricians or fix-it-people or whatever they are were working all around me. Soon it was fixed and I got radiated for the first time. The radiation therapists fit a clear glass-like tray below the machine and above my abdomen. Onto the tray they put custom-shaped lead shields (for my kidneys) and then they left the room. The buzz of the machine indicated I was being nuked. Approximately 15 seconds directed onto my abdomen, then the machine swings around under the bed, new shields put into place and 15 seconds on my back.

I left the first day feeling quite well, but noticed that I was burping somewhat more than normal-no-a lot more than normal. I had to work hard not to burp at inappropriate times. Interestingly, nobody ever said when describing side effects: "Oh yes, and you may also burp almost uncontrollably". My treatments went relatively smoothly after that first day and by the end of my first week I found myself thinking that this isn't so difficult. I was somewhat tired, particularly as I was working full days and coming home to a 6 week old on-the-verge-of colicky infant at home, occasionally mildly nauseous, but I could handle it.

At some point into the second week however, my body decided to let my brain know that it had enough and went on strike. I work as a clinical social worker mostly with teens, and unfortunately, my body decided that it needed way more rest NOW right in the middle of a session. It was all I could do to keep from falling asleep. I left work early that day, cancelled my appointments and slept. My body remained sleep deprived, yet my brain decided that it was still "not such a problem". I continued to bike around, returning home at the end of the day totally exhausted. Soon Yaya allied with my body and clearly informed my brain that I could not continue this. I was spending almost no time with my little on-the-verge-of-colicky boy and Yaya was feeling like a single parent...even with others helping out.

So I checked with my employer and found out that after 7 years of working there I had approximately 600 sick hours saved up. Well, it is for reasons like this that we bank our sick hours to use as short term disability. And so after 2 weeks of radiation treatments, with about 3 weeks to go, I decided to take sick time. I only went into work one afternoon/evening a week to continue running a group. My agency was again very supportive. I got a note from the doctor for my file as I knew this was expected and offered it to my supervisor, but was told not to bother.

Treatments continued to cause occasional mild nausea and fatigue. I imagine it was similar to being pregnant. There was no schedule to my nausea. Some days it was there, some days it wasn't. Some days I felt it right after treatments and some days I felt it in the evenings. It never got to the point of puking however. And some days I just felt perfectly fine, feeling a little guilty about taking sick time from work. But I used this as an opportunity to get to know my baby better and relax more than I had been. Once a week I checked in with the doctor, which usually involved waiting a whole lot of time and then seeing him for about a minute.

"How are you feeling? Any questions?" he would ask.

And I'd answer depending on how I felt that day. "I feel great!" or "A little nauseous" or "kind of tired". He offered me drugs for the nausea ($20.00 a pill!!!) I never bothered to fill the prescription. I occasionally took Gravol which didn't do a whole lot for the nausea, but often helped me to fall asleep. I tried to drink a lot of water, as this was recommended by the radiation therapists. And I tried to keep eating, including proteins, although sometimes my appetite wasn't all there. A friend offered to get me some weed as he heard it was good for radiation side effects. I thanked him for the offer, but didn't bother to pursue it. I'm not sure what worked and what didn't, but none of the side effects were enough to warrant anything more than being sensible: eating, drinking, RESTING and trying to get fresh air.

A couple of things changed in the 4th and 5th week of treatments. My father, who had been living in Israel, decided that he wanted to be here to help me while going through rad and so he did. By this point, I wasn't cycling to treatments every day, sometimes due to weather and sometimes due to fatigue or some nausea. He then gave me lifts to and from the hospital, which helped. The other big change was where the radiation itself was aimed during the final week. No longer was it targeting the whole abdomen, now it was just focusing a somewhat higher dose each day on a small area around the enlarged lymph node. No longer was I privileged to don that fashionable blue hospital-wear as the testicular shield was now unnecessary. There was no longer danger of scatter radiation as it was being aimed quite far from the testicles. According to hospital staff, any side effects should have decreased significantly due to the small field being irradiated. Well, my body decided not to listen to what the hospital staff had to say, even though they were very nice people, and I came the closest to puking during that last week. The final change involved the hair that had previously existed on my abdomen and upper-left pubic region. One day I noticed in the shower that much of this hair just wasn't there any more. It looked as if my abdomen had been "thinned out".

I had my final treatment on Wednesday June 23, 1999, 1 week before my 34th birthday. I bid farewell to the team of radiation therapists, went to my weekly doctors appointment, where he asked me how I was and if I had any questions and we scheduled a CT-scan for September-- 3 months later. Turns out that seminoma shrinks as it grows--awfully slowly.

September rolled around and off I went for my scan. A week later I met with the doctor to discuss the results. I predicted that the appointment would go something like this: arrive on time for the appointment and wait for an hour to see the doctor. Meet with the doctor for a total of about 2 minutes and get my new surveillance schedule. And I was right on. Turns out my enlarged node had disappeared meaning that the radiation had done its job.

The new surveillance schedule looked as follows: blood work every 4 months with a chest X-ray every 8 months for the first 2 years. Chest X-ray every 6 months for years 3-5 and then annual chest X-rays years 5-10.

Well, this is the end of the story for now...and hopefully for always.

Good night.

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