Darrell- 2x testicular cancer survivor (2003 and 2011), Treated at the James by Dr. Gregory Lowe
I was driving from Massachusetts (where I was working) to upstate NY to see my family for the July 4th, 2003 weekend when I first noticed the symptoms. I found myself gradually feeling nauseous and queasy as the drive went on, almost as if I were carsick. I do sometimes get nauseous when I sit in the back seat on long drives, but I was driving the whole way by myself, so this was very unusual for me.
I had a great time visiting my family that weekend, but the nauseous feeling never really quite went away fully. In addition, I started to feel a bit of a weight or fullness in my left testicle. There was no pain or sensitivity, but it just didn't quite feel "right." It wasn't serious enough for me to be overly concerned, but I was aware of it. I didn't want to share what I thought were the embarrassing details with my parents, so I told them that I was having "a little discomfort" in my groin area, figuring that would get me out of any strenuous activities without sharing too much. I tried to note that it was the groin muscle (which wasn't really true) because I felt weird discussing it with them. I was 23 and had lived away from home (college and work) for almost 5 years.
They were not overly concerned, either, but they did encourage me to see a doctor when I got back home, which I did in the very beginning of the week. The first person I saw was actually an intern and not a urologist, and they physically checked me but were not immediately concerned. They thought it was epididymitis, which is an inflammation of a tube that connects to the testicle. It usually isn't serious, but it can be a symptom of more serious issues. They gave me an antibiotic and referred me to a local urologist for a visit that week. I'll never forget what the intern said: "It's very important for you to see the urologist this week, even if the symptoms go away." He obviously wanted to make sure that we didn't miss something that might be more serious. I don't want to be dramatic and say that it saved my life, but things certainly could have gone very differently if he hadn't been so assertive about the follow up.
At this point, I wasn't even thinking of testicular cancer. I did a little research online (there was a lot less information available back then) and was pretty convinced that the intern was right and that it was epididymitis. I figured the antibiotic would clear it up and it would just go away.
I made the appointment with the urologist for that Friday, July 11th because I'd have to leave work a bit early in order to make it to the appointment. It was a bit awkward figuring out what to say to my boss about the appointment; I think I went with something about how my lower stomach had been bothering me. Over the course of that week, I became more aware of the testicle, and thought I could feel a small lump or tightness in it. It was very small (it felt like about the size of a pea or smaller), so while it was a bit concerning because the other testicle didn't feel that way, I still didn't think of cancer. I guess I thought cancer would feel like a huge lump and would be painful. This wasn't like that at all, so while I was beginning to realize it could be an option, it still wasn't the top option in my mind.
Because of the intern's instructions, I was going to see the urologist regardless of whether that lump went away or not. I went to the urologist, Dr. Helfrich, that Friday. He was very personable and I felt at ease talking to him about what I had felt and noticed. He did a physical examination and was able to feel the lump himself. He told me that it could be something or it could be nothing but that I needed to get it checked ASAP.
He called the hospital right then and there and told them that a patient needed to get an ultrasound of the testicle. This was Friday evening, after 5 pm, and the hospital told him that the lab was closed. Dr. Helfrich told them that it was "urgent" and that it couldn't wait until Monday. The decision to get the on-call technicians and radiologist to see me on Friday evening made me very nervous. But in retrospect, I was lucky that the doctor pushed for them to see me. If I had to wait until Monday, I might have decided that it wasn't important enough or serious enough to miss more work, and I might have put it off for days or even weeks.
Fortunately, that wasn't the case. I went right to the hospital and the medical professionals and staff ushered me right in. The tech who did the ultrasound was a young woman, which made me feel even more awkward about it all. I remember being more worried about this tech seeing me naked and running the ultrasound machine over my testicle than the possibility of a serious medical condition.
After the tech did the whole ultrasound with the gel and all, she said she wanted to have the radiologist come in and just make sure it all looked right. This was the moment that I knew something more serious was wrong. At this point I became pretty certain that it wasn't just epididymitis or a nodule. I still didn't know what it was, but I knew it wasn't nothing. The radiologist did the whole ultrasound over again. When he was done, he didn't really give me any information about it, other than to say that they would have the report to the doctor soon and that Dr. Helfrich would call me and let me know. I left the hospital feeling pretty sure that the best case scenario would be some kind of non-benign tumor, but that it was probably much worse.
Dr. Helfrich called me the next day, on Saturday, in the morning. This confirmed to me that it was something bad. I've rarely gotten test results back in 24 hours during the week; 15 hours and a call on Saturday morning was not going to be good news, and just to tell me that the test results showed nothing serious. Dr. Helfrich told me that there was a lump in the testicle and that it was likely cancerous. On top of that, he told me that there was a 95% chance that, if cancerous, it was malignant. It felt like bad news on top of bad news. My girlfriend at the time was the first person I told, and I was grateful to have someone there. I can't remember if I broke down before or after calling my parents with the bad news, but it was a tough day.
My parents were obviously very concerned and wanted me to see a doctor closer to them. My father had been through prostate cancer a few years previous and had had a very good experience with his urologist, Dr. Fisher, who is an expert in his field and very experienced. Instead of picking a random doctor in Massachusetts, we all agreed that it made sense to first see Dr. Fisher.
Unlike the previous drive, I don't remember any of the drive to my parents' house. The next few days were a blur. I took a leave from work (my boss was very understanding) and saw Dr. Fisher as soon as he could, the week after the initial diagnosis. He examined me and felt the lump. He reviewed the ultrasound and the report, and he echoed Dr. Helfrich's words, that it was cancer and likely malignant. It was very difficult hearing this, but I thought that I would receive a biopsy and that maybe there was a chance that it wasn't cancer or at least the 5% chance that it was benign. When we talked about the options, the doctor mentioned that the standard procedure when they suspect cancer is not do a biopsy through the skin around the testicle because of the risk of spreading the cancer and the low chance that it is benign. I was surprised, and immediately more nervous when I learned that they would need to remove the whole testicle and would only do the biopsy afterwards. Even more surprising was when they told me that they had to go in through my lower waist and get the testicle from inside to ensure that they got it all and there was no infection. It sounded so wrong to me that I remember Googling it to make sure that was how this surgery was always done! (It was, and is)
Even more scary to me was the fact that we needed to do the surgery ASAP, which proved to be July 22nd. That meant it was less than 3 weeks from my first symptom to the time of the surgery, and only a week and a half after the diagnosis. The doctor did inform me that it was still very small. We did CT scans and blood work that confirmed that none of it had spread anywhere else in my body, which was probably the first good news I had received since the whole thing started.
At this point, I was on medical leave from work and back living at home with my parents. The week between seeing Dr. Fisher and having the surgery went by very quickly as different relatives and friends called or came by to express their concern.
The morning of the surgery finally came. I had to be there very early (7 a.m.) for prep and everything. I distinctly remember that the scariest moment for me was when I had to get dressed for the surgery. The hospital gown was no big deal, as I'd done that other times with CT scans and such. But putting on the plastic cap and the little plastic booties finally made it hit home that this would be different than any other hospital visit I'd ever had. That was the point that I really felt the most scared, but it was so quick from getting dressed to being asleep from the anesthesia that I don't remember being scared for long. I do remember having to draw a dot on myself with a purple magic marker to ensure that the doctors operated on the correct side. On the one hand, I was a bit nervous that I would somehow draw on the wrong side. But on the other hand, I thought to myself, There is no way that this dot is going to determine which side they operate on!
After some careful deliberation, I decided not to get a testicular implant. It was a bit hard to make the decision because there was not much advice from anyone who mattered. The doctors were all happy to go either way, but they couldn't really tell me that I should or shouldn't do it or that they would or wouldn't do it. I figured that no one would ever really notice (which they didn't), and when I was so urgent to get the cancer out of my body, I couldn't really imagine putting something foreign back into it, even though there were very few real risks.
After the IV started, I remember them helping move me from one bed to a different bed directly next to it. That was it until I woke up in a regular hospital room. My parents and siblings were there. It took a couple hours before I was well enough to walk to the bathroom on my own, which was a prerequisite for going home.
Recovery and Radiation
Recovery at home (my parents' home) went well, though I overdid the walking on the second and third days and paid for it with a lot of soreness in the lower abdomen/groin area. The testicle area itself (actually where they cut it from the cord) hurt moderately for a few days, but it was the muscles and incision at the groin/waist area that took longer to heal. I was walking regularly within a week or two, but it was a full month before nothing hurt at all. Laughing and coughing made those muscles hurt a lot in the first few weeks, but sneezing was the worst! I worked so hard to stifle sneezes because they would make the incision site and all the muscles underneath hurt like crazy for about five seconds (I'm guessing because it is near your diaphragm).
The lab results eventually came back that it was stage 1 seminoma (the most treatable kind). After 2-3 weeks, I started radiation of my lymph nodes (upper chest). They lined me up with the machine and drew dots on my chest to keep it all lined up correctly every time. They placed clear tape over each mark to keep them from rubbing or washing away. After a couple weeks, the tape started to fall off and the marks started to rub away, so they let me be in charge of darkening the marks as needed.
I had 4 weeks of radiation, every morning Monday through Friday. The first day was fine until I got home from the hospital. Then I was the most nauseous I had ever been in my entire life. It was all I could do to make it through the rest of the day. I remember thinking that there was no way I could do 28 days of it if it would be that bad every day. My oncologist was incredibly helpful, and researched all the possibilities: more radiation per day for fewer days (to get it over as quickly as possible), less radiation for more days (to decrease the nausea per day). But he determined that the way we were going was the most effective way to ensure the cancer didn't spread. He did find a very effective anti-nausea medicine that really made a big difference.
The radiation got more bearable as it went along, and the nausea abated. I was lucky enough not to have to go through any chemotherapy, and my subsequent test results continued to be clean. I had to get CT scans every 2 months at first, then every 4, then 6, then a year, and eventually was able to space them out to every 2 years. The blood work, CT scans, and X-rays continued to be clean.
Within a few months, I was able to get back into the routine of every day life. After a while, it felt like not too much had changed from before the cancer. I worked, I felt normal, and life went on. The one big difference was that I became diligent about self-checking for any possible lumps in the other testicle. Over the next decade or so, I had a few visits to different doctors because of something I felt, or thought I felt, in the remaining testicle. It always turned out to be nothing, fortunately. But I would say that it is much harder to know what is or is not a normal feeling when you don't have another healthy one to compare to!
Remission and Rediagnosis
Then, in early 2011, I felt a small hard spot in my testicle. I didn't immediately think the worst, because it felt a bit different than it had the first time (not that I could remember all that clearly from 8 years before). This time it was very small, maybe half the size it was in 2003.
The first doctor I saw only did an MRI, not an ultrasound (which I thought was the standard way to diagnose or rule out testicular cancer). The MRI didn't show anything suspicious, but I didn't feel comfortable when he said that it was nothing. My girlfriend of 2 years urged me to get a second opinion, or as many opinions as I needed to feel comfortable. I am so grateful for her advice, because I've always trusted doctors and nurses implicitly, and I've never been one to challenge them or seek more advice or tests. Fortunately, in this case, we did. I decided to go see my urologist for the first surgery, Dr. Fisher in Albany, as soon as I could. It was several months, and the hard spot never went away. Because it felt so different, I didn't think it was cancer again. But I was concerned when it didn't go away.
After seeing Dr. Fisher for the the first time in 5 or more years, things moved quickly again. It went from initial exam to ultrasound to diagnosis in less than a week. I was very surprised to find out that I again had a stage 1 seminoma, this time in the remaining testicle. The impact emotionally was much different this time. On the one hand, I knew more of what to expect (though I was anxious about the possibility of needing chemo). On the other hand, I was devastated to find out that I had this horrible disease again. I struggled with thoughts of whether I was genetically damaged, or whether this was going to be a lifelong problem. I was confident that they could fix me again, for now. But I worried about whether this would just keep coming back or whether it would be a different cancer next time.
The surgery went well again (no purple marker this time, since there was only one left!). I again struggled with the question of the implant. I had more choices this time: zero implants, one implant, or two implants. I decided that I wanted something this time, because I worried about feeling and looking empty. I considered getting two implants, but I decided that there wasn't much sense in trying to imitate what it looked like 8+ years ago. In all reality, I had gotten so used to just the one real one, that two would have probably seemed very strange to me. Again, there wasn't a lot of advice, online or in person, and I craved as much information about it as I could get. I ended up getting just one implant partly on the advice of one doctor who said that it might be good to not have to deal with body image issues at the same time of having to fight cancer for a second time.
Recovery and Complications
I didn't need chemo, fortunately, and the doctors did not want to do radiation in the same area for a second time, so we opted for close observation. I had some trouble with fertility questions. Obviously, after the second surgery, I would be sterile. After the first surgery, I had banked sperm, which was viable. However, after 5 years of storing it, and figuring I would never need it (I was still healthy), we chose to have them discard it rather than pay several hundred dollars per year. And, guess what...by the time I was diagnosed in 2011 and went to the IVF place to see if my current sperm was viable, it turned out that it wasn't, perhaps as a result of the cancer. This was the most devastating news I received in the whole thing. It was so depressing to find out that I would never have kids of my own. It wasn't on my immediate or even medium-term horizon, but having the choice taken away was very difficult.
In the end, the amazing IVF clinic was able to actually salvage quite a bit of viable sperm from the testicle itself during and immediately after the surgery. My girlfriend and I were both incredibly relieved. Even though we may never decide to do IVF, and there was no guarantee it would even work if we did, it was comforting to know that we would have the choice to try.
After the surgery and recovery, I dealt with some very difficult and scary eye swelling. My eyelids and my eyeballs themselves puffed up to huge proportions, to where they were bulging out of the sockets. Visits to quite a few different kinds of doctors (optometrists, ophthalmologists, allergists, the ER) led to no easy answers. Eventually, I had to be put on high doses of steroids for months, which caused its own issues. I think I may be the only cancer patient in history to actually gain weight!
Eventually, my doctors and urologists tried different regimens for testosterone therapy (Androgel helped some, but not enough), I tapered off the steroids incredibly slowly, and the eye swelling went away. I found nothing online about eye swelling, testicular cancer, and testosterone being related, and none of my doctors could find any research or studies showing that it could be. Still, it seems like something (being in the hospital, the surgery, the sudden and immediate changes in hormones) must have been the cause.
I can happily say that I'm now in remission, more than a year out, with clean blood work, X-rays, and CT scans. I've been able to go from every 2 months, to 4 months again between scans. And Testopel (a testosterone implant that goes under the skin) has done wonders for getting my testosterone levels into the normal range. I'm sleeping well, working out again (it seems strange to think that I'd like to be down to my "pre-cancer weight"), and back to living life normally.
The most important thing I realized throughout all of this is that positive thinking is fine, and can help you when things are difficult in the diagnosis and treatment. But it's also ok to be sad, angry, or frustrated about the unfairness of it all, as long as it doesn't overwhelm you. I found that sometimes being able to let yourself put out some of those negative emotions can be cathartic.
I'm not sure if I will ever fall into the routine that happened in the past, where I almost forgot about the cancer altogether, but I am fully recovered, and doing well. I hope that my story can help others out there who might be scared or lonely or just pissed about their diagnosis. And I'd be happy to talk (on the phone, by email, or in person if possible) with anyone just diagnosed or struggling with their treatment. I can also relay more of my experience with the testicular implant or with different testosterone therapies. From my own experience, being a 2x testicular cancer survivor is very different than 1x, so I would be especially happy to talk to anyone diagnosed for a second time.
Nick- diagnosed with Testicular Cancer in September of 2006, the fall after his graduation from the University of Notre Dame.
He immediately underwent a procedure to remove the cancerous testicle followed by three months of chemotherapy. Unfortunately the cancer had spread, so in March of 2007 he had an operation to remove the remaining cancerous lymph nodes.
Through all of this, Nick had a goal, to run the Columbus Marathon and that October he accomplished that feat and is now 4 years cancer free.