It’s Just Nuts: My Testicular Cancer Adventure

Warning: stop reading now if a really long post about my balls does not interest you.

Yesterday’s visit with the doctor was a good one. It wasn’t fantastic, but it was good. I went to see Dr. Rohan to get the results of my latest round of tests. The results are a little screwy, which is what I’ve come to expect from Selayang Hospital’s urology department. Since coming to Malaysia just over two years ago I’ve had more than thirty appointments at Selayang Hospital, most of them at the urology department. I think on at least half of those visits, something has been screwed up. This time was no different. There were also some results that could be interpreted in more than one way, although most of the results were great. So I didn’t leave the hospital with a big smile on my face, but I am happy. Because I’ve got the wakeup call that I should have had when I first found out I had cancer, and now I’m seriously making a real plan for the next few years of my life.

My cancer adventure began in late 2001 when I noticed a lump on my right testicle. I went to see my doctor and was told it was just a cyst. Not only that, it wasn’t even on the testicle, it was on the epydidymis, which is just behind the testicle. The doctor told me there was no need to be alarmed because this kind of cyst is painless and harmless, and there would be no need to remove it unless it grew to the size of a grapefruit (which sounds scary). Mine did start growing, and not only that, there was quite a bit of pain down there. So I told my doctor I was worried and he referred me to a urologist.

In early 2002 I saw the urologist. He repeated the ‘painless and harmless’ stuff, but said if I really wanted the cyst removed, he’d remove it. As for pain, I was experiencing it, but it wasn’t because of the cyst. My right testicle was quite tender, plus it seemed a bit atrophied. So the urologist said he’d remove the testicle too. I wasn’t sure about that, but I always do my homework in these situations, and I gave him the go-ahead.

So on May 8th, 2002, I went to the Victoria General Hospital in Halifax to have an orchidectomy. I sat in a waiting room for a while, then got prepped for surgery. Next thing I knew I was waking up in a recovery room. I was pretty out of it so the doctor didn’t have a chance to talk with me (and apparently I was driving the nurses crazy because I kept asking when I could eat. I’d ask, then five minutes later forget I had asked, and then ask again). I went home that day and spent the next week or so lying in bed. It was nastier than I’d thought it would be (‘day surgery’ sounds so quick and easy), but I recovered soon enough.

When I went to see the urologist soon after the operation, he gave me some unsettling news. When he had removed the cyst and the testicle, he noticed three strange marks on the testicle. He said he had sent it for testing and would let me know soon. But he told me not to worry, that it most likely wasn’t cancer. However, the tests revealed that one of the marks was a scar (from what I don’t know) and the other two were malignant tumours. Again, though, he told me there was no need to worry. After all, the cancer had been removed from my body, and the remaining testicle was okay. He ordered a CT scan, blood tests and a chest X-ray just to be sure, but again he told me not to worry because this was just a precaution and he was pretty sure the cancer hadn’t spread.

Testicular cancer follows a predictable path. It grows on a testicle, then travels along the lymphatic system and deposits itself in the retroperitoneal lymph nodes, which are behind the abdomen somewhere between the kidneys. From there it goes all over the body, first to the lungs, then to the other organs like the liver, kidneys and the brain. If the cancer is confined to the testicle it’s Stage I. If it has spread to the lymph nodes it’s considered Stage II. Once it spreads beyond that it’s Stage III. Many cancers have a Stage IV but testicular cancer doesn’t, because once it hits Stage III you’re in deep trouble and there ain’t gonna be a Stage IV.

There are also two main types of testicular cancer tumours, seminoma and non-seminoma. Non-seminoma is nasty. It grows and spreads very quickly. By the time you’re diagnosed it’s probably already spread to Stage III or at least Stage II. That’s what happened to Lance Armstrong. He had non-seminoma that had already done the ‘Tour de Lance’ by the time it was caught. He needed lots of treatments, including brain surgery. The other kind of testicular cancer, seminoma, will still kill you if it gets to Stage III, but it grows much more slowly and takes a long time to spread. It’s a kindler, gentler killer.

I had seminoma. That’s why the doctor was so optimistic. Sure enough, the tests came out clean. The tumour markers (AFP, Beta-HCG and LDH) were normal, which meant I didn’t have non-seminoma (seminoma doesn’t leave tumour markers). The chest X-ray was clear, so the cancer hadn’t spread to my lungs. The CT scan was clear too, so it looked like the cancer was indeed gone. Alas, that wasn’t really the case. One really observant urologist took a second look at the CT scan results. The people who evaluate such scans are taught that anything smaller than 1cm in the retroperitoneal lymph nodes is nothing to worry about. However, he noticed there was a 9mm mass right in the spot he would expect a tumour to be growing. 9mm is pretty damn close to 1cm, but whoever initially looked at it went by the book and basically said, “Next!” This doctor, though, was a bit worried. I was, too. We talked about it at length and decided the best option was radiation therapy.

Radiation therapy, also known as radiotherapy, is known to be very effective in the treatment of this kind of cancer, because seminoma is extremely sensitive to radiation. One cycle, consisting of twenty visits to the cancer clinic, would be sufficient. Of course, radiation is not the perfect solution. It doesn’t just kill cancer cells, it kills healthy cells too. It’s like carpet-bombing to get rid of the cancer. But it was a hell of a lot more attractive to me than chemotherapy. Chemo ravages the whole body from within, whereas radiation is localized. So it seemed radiotherapy was the way to go.

A few months before the radiotherapy treatments were to begin, I had to go to the hospital to be ‘lined up’ for the treatments. I was put into the machine for several dry runs with no radiation, just light beams pointing to where the radiation was going to be aimed. The technicians were drawing on me with marker-pens to line the beams up properly, and I thought that was odd. “Hey,” I said to one of them, “I’m going to visit Malaysia in a few weeks, and I’m not having the
radiation treatments until late August. These lines will be long gone by then. How will you know where to aim the radiation?”
“Well,” she responded as she held up a very long needle with a drop of black ink at the end, “that’s why we’re going to give you some tattoos.” With that, she followed the lines and stuck the needle into me seven times, where X marked the spot. It’s bad enough I have a couple of tattoos from my foolish youth (and have to constantly explain to people that they do not invalidate ablutions for prayers), but now I have seven more. At least the other seven are just little dots.

Leen and Smokey had already moved to Malaysia, and I was working a bit longer to save some extra money. I quit my job, flew to Malaysia, had a second wedding reception, met lots of relatives, then flew back to Canada about a month later. I visited my hometown, then headed back to Halifax to begin the treatments.

The treatments, and their effects on my body, were unpleasant but not unbearable. I was warned that I’d probably feel worse and worse as the treatments progressed, but fortunately I was able to take part in a trial for a new drug that controlled the nausea. The first day I walked to the Nova Scotia Cancer Centre and waited with a bunch of other cancer patients (who made me think my situation really wasn’t so bad). Then I was called into a little room, where I changed into one of those lovely little johnny-shirts. From there I entered a big room containing the machine, which looked like a giant electric hand-mixer without the metal whisks. I was asked to lie down on a special table that looked like something from the infimary on the Starship Enterprise. Then the real horror began.

Since radiation was to be aimed in the general direction of my groin, it was necessary to protect what little remaining chance I had of someday becoming a father. For that, there were two hollowed-out pieces of lead that would be placed around my remaining testicle to shield it from the radiation. The staff affectionately referred to it as the jewel box. I decided to call the two pieces of the shield Coco and Nut. Wait, I mentioned horror, what’s so horrible about all this? Oh, you’ll see. Since I had to lie perfectly still after being lined up just right under the beams, I couldn’t place Coco and Nut where they were supposed to go. No, the radiotherapy technicians had to do it. They gathered around me, flipped up the johnny-shirt, and proceeded to move things around and make little adjustments so that everything fit just right. Maybe it would have been okay if they had all been big, fat, hairy men, or even big, fat, hairy women. But no, the radiotherapy technicians at the NS Cancer Centre were all beautiful young women. I just stared at the ceiling and tried to think of my wife. No, wait! Bad idea. Noble, but it wasn’t going to work. Okay, how about baseball? No, I didn’t understand how that was going to help. Okay, car accidents. Yeah, that’ll do it. Or maybe I could just count the holes in the ceiling tiles. Yeah, that was the solution.

Once Coco and Nut were firmly in place, the technicians disappeared. Something about not wanting to be exposed to radiation. Great, I thought, what about me? Suddenly I heard a sound like a machine-gun, only it was a snapping sound, not a bang. It went on for about ten seconds, then was repeated. I forget how many times (maybe it wasn’t even repeated, I was still reeling from the horror of trying to keep my composure while being manhandled by several beautiful young nurses so I wasn’t really paying attention). Then I was done. Done like dinner. They told me I could get dressed, and I headed home. Wow, I thought. That was easy enough. One down, nineteen more to go.

With each treatment I began to feel a little worse. I started to feel nauseous after a couple of days, and I began to feel really tired. I never vomited, probably thanks to the new medication. But I always felt like I was going to vomit, and sometimes I just wished I could get it over with. The worst part was the fatigue. By the mid-point of the treatments I was so tired I would stand up and have to sit right back down again. That was because the radiation didn’t just kill cancer cells, it killed healthy ones too. The idea was that healthy cells can regenerate, while cancer cells would just disappear for good. Not only that, the radiation was painting a nasty little sunburn on my abdomen. Still, it could have been worse. I had weekends off so my body was able to recover a bit. The only really nasty thing about the treatments was the daily molestation by the radiotherapy technicians. They were really good sports about it. “Don’t worry,” one of them told me. “We see guys like this all the time.” That made me feel a teeny little bit better. “But,” she said, “they’re usually really old men.” With that she smiled, and I just stared at the ceiling. One hole. Two holes. Three holes. Four holes…….

Alhamdulillah, I made it through all twenty treatments without anything nasty coming up, either at the dinner table or on the Star Trek table. After a couple of meetings with the specialists I was given a good prognosis. Seminoma, even if caught at Stage II, has a very high cure rate. The specialist said there was at least a 95% chance that the cancer was gone. Of course, it could come back, especially during the first two years. And even after those first two years, perhaps many years later, I could develop another cancer such as leukemia, because of the radiation I was exposed to (that would be ironic). But things were looking up. I said my goodbyes to the doctors and staff at the Nova Scotia Cancer Centre. I also said farewell to the other patients I had met there, some of whom had it a hell of a lot rougher than I did.

Within a couple of weeks I was on a plane, headed for a new life in Malaysia. Once here I began a quarterly routine of blood tests, chest X-rays, CT scans and examinations. As I’ve mentioned, the staff at Selayang Hospital have a habit of screwing things up, and it has happened to me many times. Blood samples would clot and become useless before they could be tested. CT scan results would note that I’m missing my left testicle, even though the right one is gone. Little mistakes like that. Still, it wasn’t so bad, mostly because Dr. Rohan is a fantastic urologist. The one time I saw a different urologist here, I relived the horrors of my radiotherapy treatments. Her name was Dr. Murbita, a nice Malay lady, head scarf and all, and as she snapped on a pair of latex gloves and said,”Okay Jordan, please remove your pants and lie down on the table with your knees up to your chest,” with the head nurse happily looking on, I screamed inside and looked for something to count on the wall. I only saw Dr. Murbita once, although I see that nurse all the time and for some reason she calls me Johnson. The funny thing about that is it’s probably an honest mistake and she has no idea why it’s funny. I swear, I think the only people alive who have been handled and/or seen by more women than me are Peter North and Ron Jeremy. Anyway, now I cling to Dr. Rohan like a baby monkey clings to its mother, mainly because he gets things done and he never screws up.

So there I was yesterday, waiting to see Dr. Rohan for my two-year results. I knew not to get too excited about this. While the specialists in Halifax told me any relapse would most likely occur in the first two years after the treatments, I know from reading that there’s also a slim but real chance it could come back after that, especially in the first five years. In fact, it could come back anytime. Whatever news I was going to get, no matter how good, I could not assume I’m officially cured. There’s no such thing.

When I was called in to see Dr. Rohan, he told me things looked okay. He showed me the results of the CT scan. “Left testicular prosthesis noted.” Well that was interesting, since my left testicle is real. There IS an implant on the right side though. Dr. Schwarz, the urologist who did the operation in Canada, stuck a saline-filled implant in there after taking some things out. I was okay with tht because I knew saline is a lot safer than silicone. In hindsight, being a married man, I’m not sure why I even allowed him to put that in there, but he never really asked, he just said he would take out my testicle and replace it with a saline-filled implant. I suspect he got a fat commission from the manufacturer. Anyway, I don’t necessarily think it was a stupid decision, and I still think women who get breast implants are very silly, except maybe the women who have lost a breast to cancer. And while saline isn’t too bad, silicone is always stupid.

So the CT scans were normal, except for the fact that whoever looked at them the first time couldn’t tell their left from the right. Just to be sure, Dr. Rohan examined me (easy there buddy, that stuff is tender!) himself. Everything seems okay. The only problem is one of the blood tests. The AFP (alphafetoprotein, which is normally used to determine whether a woman is pregnant) was a bit high. ‘High-normal’ is 8.2, and mine was 8.8, up from 7.3 last time I got tested. That made me worry about non-seminoma, the beligerent drunk uncle in the testicular cancer family. Dr. Rohan said it’s probably nothing to worry about, since it could still be high-normal, just a little higher than normal high-normal. Just in case, I think I’m going to get it checked again anyway. I’ve been having a ball up to this point, but a second bout with testicular cancer would really be nuts. There was also a little problem with my hormone levels, which is understandable after having a nut lopped off. The levels are a little screwy, but technically still normal, so things don’t look so bad.

So that’s the story. Two years after finishing the treatments to get rid of the cancer, I’m tentatively okay. I like to tell people that being diagnosed with cancer was a real wakeup call for me. In a way it was, because I certainly began to think more about my life, about my own mortality. But it really wasn’t enough, because I didn’t make any solid plans or really do anything differently, although I do think I appreciate life more than I once did. Now, however, I finally have my wakeup call. The cancer will always be a part of my life, even if it’s mostly just a memory. With the grim spectre of cancer always standing by, and the effects the cancer has had on my body, I have to make a real plan for how the rest of my life will work. As I begin my thirties I really have to think about my health, about fitness, about fatherhood, and about what I need to be concerned about as I age into my forties and beyond, inshallah. One thing’s for sure: strong faith and strong family support have really helped me through this, and they will continue to be the pillars upon which I stand.

To all the fellas out there: testicular cancer is a paradox. It is one of the rarest cancers, but it is also the most common cancer in men under thirty-five. One of the biggest risk factors is having an undescended testicle as a child, and also having a relative with testicular cancer. It affects some ethnic groups more than others, being more common in white men. In fact, the highest numbers can be found in Norwegian men, so I can probably blame the Vikings in my family tree for passing this down to me. Testicular cancer is pretty rare in African and Asian men. But it can still hunt you down, no matter where you are, no matter who your ancestors were. It’s also highly curable though, especially if found early. My best advice is: check yer nuts. Regularly. There’s plenty of good information about testicular cancer available online, and I recommend the Testicular Cancer Resource Center and TC-Cancer.Com . The most important thing to remember is what I often tell myself: I have cancer, but it doesn’t have me. Peace out.

One Reply to “It’s Just Nuts: My Testicular Cancer Adventure”

  1. Hi
    Im ridzwan, can i get in touch with u?
    Im having a similar problem, i noticed theres a lump on top of my testicles. The lump has started to spread to both testicles and become harder in texture. I went to hosp sg.buloh and the docs run ultrasound and they said it was just cyst. But now the pain has been increasing and very disturbing. Also been experiencing this weird attacks of headache. Any advice as to what i should do next….

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