A Courageous Journey - Experiences with Testicular Cancer Patient Education - Improving Health through Education - download booklet This booklet was created at Princess Margaret Hospital in Toronto to help testicular cancer patients and their families understand the facts about testicular cancer and the experiences ofother men with the disease. Our sincere thanks go out to the more then 40 men who shared their experiences with testicular cancer so openly and thoughtfully. Each of these patients had different reactions to the diagnosis, treatment, and post-treatment stages of testicular cancer,and they show clearly that there is no one right or standard response to a diagnosis of cancer. This booklet is their gift to those men and families who are now traveling the same road. We hope that it is helpful to you
Peter Laneas
I was diagnosed in December 19th 2002 @ Toronto General Hospital after about 1.5 months of chronic misdiagnosis. I'd gotten to about a stage 2-c by that point and they'd wanted to do an orchiechtemy that night. I'd taken the offer of the prosthetic. Following the CT and ultrasound, 6 rounds of chemo were done to follow up. It was brutal. I'd been given the option for either for observation or get the surgery (RPLND). I took the choice of surgery. My odds were roughly 50/50 that my breathing would pull through being put out so soon since the chemo and it had been affected. I was 27 and ready to die when I went in for surgery, August 1st, 2003. 4 Years ago today!
From that time, I'd felt pretty lost. Tried to find my way and funny enough, always felt that it wasn't over ... I'd gotten off the hook to easy. I was right. Last January, I'd developed a number of tumors in the other testicle, the 3% of that happening just blew me away. But, I'd caught it really early and given that there was no where for it to move with all my lymph nodes gone, it was a one shot deal.
The reality is that until August 11, 2004, I knew nothing about testicular cancer or the risks associated with it. To demonstrate my lack of education on the topic, I believed it was a disease that only affected high performance athletes such as Lance Armstrong, John Kruk and Mike Lowell of the Boston Red Sox.
However, my diagnosis in 2004 changed all of that. Since then, I have questioned why I didn’t know anything about the disease prior to my diagnosis, especially being born with an undescended testicle – a high risk factor in developing a tumour. Now I knew that testicular cancer was no joke, but I was 30 years old and surely my urologist in Hamiltonwould have mentioned to me that there was a risk for testicular cancer. After all, I had been seeing him since I was 15 years old about the problem.
My family physician in Halifax , NS is the one to thank. It was in March 2004, a mere seven months after moving to Canada’s ocean playground to complete a public relations degree, that I happened to mention to her that I was born with an undescended testicle. I remember the quizzical, raised eyebrow look she gave me. It’s the one so many physicians have perfected that says, “Hmmm, I think we need to look into that.” Ultimately, her decision on that day to send me to a well known urologist in Halifax saved my life as it was discovered that I did have testicular cancer. Although I was showing no symptoms, I credit her for taking my life in her hands and bringing awareness to something I should have known about many, many years ago.
I was fortunate that I didn’t require further treatment (chemotherapy or radiation) after my surgery. A simple one-hour procedure called a radical orchiectomy was all I needed. Although physically I have recovered, it’s the emotional pain that has left the biggest impact on me. Undeniably, I was terrified that I had this cancer growing in my body; however, it helped me question and appreciate my surroundings. I began asking questions I probably would have never asked myself. I began looking at things more from a micro level, inducing a sense of appreciation for every detail and aspect of nature. I refer to this as the dichotomy of life, that ethereal moment when we fear and embrace our mortality.
What I remember most are the few moments laying on a gurney outside of the operating room. My urologist/surgeon was 10 feet away scribbling some notes and prepping for the surgery. He was oblivious to my emotional pain, but I suppose he had no idea that I had lost many loved ones to cancer. While I knew that there was a good chance that I would beat the disease, I couldn’t help but think of my mother who died of esophageal cancer at the age of 40, and my good friend Gene, my mentor and a man I deeply admired and shared a deep passion for baseball with.
The last three years of my life have been changed by testicular cancer. Like many others who have been impacted by the disease, I have a sense of accomplishment and pride in overcoming it. However, there are others who still hide behind the veil of embarrassment and are not able to share their stories of recovery. Do I blame them? Not at all. This is why in August 2007 I created the first ever testicular cancer fundraising awareness event in Atlantic Canada. Nuts4Ribs (www.nuts4ribs.com) is about bringing testicular cancer stories to the forefront through a ribfest. In our first year, Nuts4Ribs raised more than $23,000 for the Department of Urology at the QEII Health Sciences Centre in Halifax . We are already planning for 2008 and hope to double our efforts and raise $50,000.
I suppose the moral of my story, much like the stories of many other men, is that I knew nothing about the disease before I was diagnosed. By arming adolescents and young men with information, we can make a big difference in at least getting them to check regularly and ask their doctors the right questions.
On December 11, 2005 my son, Michael Campbell aged 19, walked into Peterborough Hospital. While attending school in Peterborough he was complaining of headaches and they were becoming severe. After running some tests, Micheal was diagnosed with testicular cancer. The next day he was transferred to Kingston General Hospital for surgery and to start chemo. Just 3 short days later, on December 15, 2005 the family was called in and Michael was given the last rites. Our family was devastated. How could he be so sick so fast? Over the next 15 days we rode an emotional roller coaster with our hopes going up and being knocked down until sadly on December 30, 2005 Michael succame to this deadly disease.
For 19 days we prayed and prayed and continued to ask the question why? They were never answered. The one thing I feel deeply in my heart is that if my son had been told of the signs and symptoms I wouldn't be crying writing this story to you today.
I woke up on what seemed to be an ordinary day of the week but little did I know that on that ordinary day of the week on that very ordinary morning I would discover a lump on my right testicle and I could tell it was definitely not ordinary.
It was tiny! Maybe the size of a pea and it was hard. Now we all tend to think we’re invincible. I was 27, young, fit and I felt totally healthy. Our egos don’t want to believe we could possibly have something wrong with ourselves so that’s when the brain pops in and says things like, “Oh, maybe it’s nothing. Maybe it’s some calcium build up or something. Maybe it’ll go away…” I’m glad I had the sense to ignore those thoughts and I went to see my doctor right away.
I had an ultrasound and it determined that the lump was in fact abnormal. I was sent to an urologist and that’s when I was told that based on the way it felt, my ultrasound results and my age, all signs indicated it was cancer. I asked if they could do a biopsy to make sure but it turned out that whenever there is a lump of any kind in the testicle the procedure is to remove the entire testicle.
Since I didn’t exactly have a choice I said, “Sign me up! Let’s get this out!” I was hoping that if it was in fact cancer that I caught it early enough and we can remove it before it spread. They don’t actually cut the scrotum or the “nut sack,” as I like to call it. They make a small incision in the groin and actually pull the testicle out! It’s a pretty simple procedure that only took about 45minutes. I was offered the option of having a prosthetic inserted! I thought this was pretty funny. I mean aesthetically, you can’t really improve the nut sack! It’s pretty unattractive to begin with. You know God got pretty lazy when it came around to the balls, “Oh I’ll just put these in this sagging hairy sack, that’ll do.” So, I might be a little lighter down there but to be honest it all looks pretty much the same.
The tumor was completely contained to the testicle. It had not yet spread so I was extremely lucky. I was facing the best case scenario but I was still not in the clear. I was feeling confident for sure and they say that if this cancer is caught early it is one of the most curable but I was still given a 30-50% something could return.
I didn’t have to do any chemotherapy or radiation instead I was given the choice of two possible treatments. I could either do a second surgery to remove the lymph nodes connected to the infected testicle (basically if something did spread the next place it would go would be the lymph nodes. Although my CT scan didn’t show that anything spread it only detects clumps of cancer cells. If just one single cancer cell spread it would not show up.) Unlike the first surgery this is a pretty major one. The lymph nodes are situated behind the abdomen so they literally have to cut you open and lift everything out of the way to get to them!
The second option for treatment was to go on a surveillance plan whereby I would be monitored regularly and if something happened to return they could catch it right away. The surveillance plan is over five years. The first two years I would go in every two months and do a chest x-ray and blood test and every other time I’d also do a CT scan. The third year I would go in every four months, the fourth year I would only go in twice and the fifth year I would only go in once.
Since I felt confident that I caught it early and all my tests indicated nothing had spread I chose to do the surveillance plan. I am currently in my second year and nothing has returned! In my mind I believe I am completely cured but I guess it’s not until I finish the five year plan that they say that officially.
I don’t think I realized how big of an impact it had on me when I found out I had cancer. I tried to be strong and let everyone know I was going to be fine but I had moments of fear. Even though I was extremely lucky it definitely has put life into perspective. Life is too short to get stressed about certain things. I also listen to my body more closely. If I feel tired then I take a rest even if I have things to do. I try and respect those signals as opposed to pushing myself to the limit.
I’ve never hated the fact that I had cancer. It’s become a part of who I am. I’m proud to be a cancer survivor. We all face challenges in life and its how we deal with those challenges that define who we are. This has definitely made me a stronger person.
I happen to be an actor and I’ve created a one-man show about my experience called, “MY LEFT NUT.” My goal is to tour this show to high schools and advocate the importance of early detection and early diagnosis. Although it deals with my cancer experience it is also a message about how to deal with the challenges that life throws at us and how it’s possible to overcome them no matter how daunting.
REMEMBER: PLAY WITH YOUR BALLS! AND IF YOU FIND SOMEHTING YOU’RE NOT SURE ABOUT…GET IT CHECKED OUT!
At 27, Cory was looking forward to a fulfilling his future in graphic design. In the summer of 2005, while on a fishing trip in Northern Ontario, Cory had discovered a lump on the right side of his chest.
The diagnosis came quickly that he was a victim of testicular cancer, and unlike most cases, he did not have any signs of the disease in his testicles. Cory had seen a medical professional regarding concern about at pain under his ribs 4 weeks prior to discovering the tumor but what was thought to be a strained muscle turned out to be the challenge of a life time.
After months of chemo therapy, Cory returned to the hospital for an operation to have what remained of the tumor removed from under his rib cage and then continued for more chemo therapy treatments. Unfortunately, these powerful drugs where breaking down his bone marrow and the sessions had to be stopped. Discussions and preparations where being made to do a bone marrow transplant. This too became an impossibility due to the cancer had spread throughout Cory's young body.
In this desperate situation we had tried everything. Cory left behind 2 brothers and a nephew that he adored and for Cory my mission is to help raise the awareness to them and to other energetic young men whose life is full of the future regarding the signs and symptoms of testicular cancer.
My name is Lynn Baxter, and I live in Thunder Bay, Ontario. My son was diagnosed with testicular cancer at the age of 21yrs old in his second year of university. He was always an athletic guy, involved in every sport and very healthy, so I never dreamed it was possible for him to be sick. The summer before his diagnoses he was home for the summer, complaining of backaches. I thought he was just doing too much, or maybe sleeping on a too worn mattress. I noticed that his chest seemed to be swollen, but passed it off as maybe hormonal changes in his body due to the maturating process, or something. I didn't want to embarrass him by asking why his chest looked swollen and more feminine, I guess.
When he got back to McMaster University in Sept he got sicker and sicker with flu-like symptoms, and went back and forth to the hospital, but no one could tell why he felt the way he did. He had moved into a new apt and we figured maybe the new carpet and chemicals in it were affecting him. He was getting weaker by the day and when he called me and told me that he had lost 40lbs in 3wks, I told him to go to the hospital and refuse to leave until they could tell him what was going on. Thank goodness he had a girlfriend at the time, who stuck by him, and insisted that he be admitted to the hospital, as we lived 2,000 km away from him!
Finally, after a lot of tests and wrong diagnoses, he was discovered to have cancer. The news was devastating. We packed up and drove 24hrs non-stop, crying most of the way, to his hospital bed and couldn't believe how he looked when we saw him. We were told that he had a 20% chance of survival as the cancer had spread to his liver, lymph nodes and lungs. The doctor told us that because his liver was so full of cancer, he probably die in his sleep. At this point we were desperate and prayed a lot and utilized some alternative healing methods.
To make a long story short, he went through many rounds of chemo, a bone marrow transplant, loss of one testicle, and a lot of agony, but after three or so years he was finally cancer free. It has now been 11 yrs, he has lost a lot of his hearing, had a lot of damage done to his teeth, wears glasses and has very thin hair, due to massive doses of chemotherapy, but he has survived!! I am very thankful for that, and am now so much more aware of testicular cancer and the systems. I have always spread the word to those I know, of the signs of this type of cancer, as we had no idea of even what testicular caner was, never mind the symptoms to be on the lookout for.
Thank you for making people aware of this disease. We never even knew that men should check testicles for lumps, or that the swollen chest was a actually symptom of testicular cancer. I never saw it on the list of signs, until I read your article. Hopefully more people will be able to have treatment before the cancer progresses through the body, making treatment more difficult. I wouldn't want any young man to have to suffer like my son did, or to go through the worse, like your son did. I think it is very important to let other people, who are going through this now with their sons, to know there is hope. I remember hearing such a dismal diagnosis and seeing all the people dying in cancer wards, feeling that there is no hope at all. If we could have heard one success story at the time, it could have given us much more optimism and made us feel like maybe cancer could be beaten.
Jason is healthy, and is now at the Ontario Police College in London and will be graduating as a police officer at the end of July. He has been hired by Nishnawbe Aski Police Service and will be policing in remote northern Ontario First Nation communities once his training is finished.
Keep up the good work. My thoughts and prayers are with you, Lynn.
It was in December 2002 when we noticed Adam had been losing weight, he had been having a lot of back pain as well as stomach pain. We took him to our doctor who treated him for suspected ulcers. Over the next 5 months, Adam continued to feel worse, he lost more weight and the pain became unbearable at times. Adam asked me to take him to the hospital to be checked out, this was our 2nd visit there for the same thing. After hours of waiting I convinced the doctor to run more test. He finally agreed to have Adam come back the next day for a ultra sound on his stomach.
On April 22, 2003, our lives would change forever. Adam was 18 years old and in his last year of high school when we received the devastating news, he had Testicular Cancer. We were all shocked, we had never heard of Testicular Cancer let alone thinking a young man could have it. Boy, was our journey going to be a rough one! The doctor told us that his cancer had spread from the testicle into his stomach area, he had a tumour the size of a football on his left side.
The next day Adam went back to the hospital to have his testicle removed. It was then that we found out that Adams testicle swelled around age 15, but he thought it was growing and said nothing. From there we were sent to the Hamilton Cancer centre to begin his treatment. His doctor told us there was no time to bank sperm as he would be dead in two months if we didn't start right away. We were also told that he had a real good chance of survival.
Adam started chemotheraphy the following week for the next 3 months. He could no longer attended high school, he was too sick from the chemotherapy. Around June, he developed a blood clot in his lung, a side affect from the chemo. He started injection in his stomach right away, but had to continued chemotherapy. Adam had many hospital trips during that time due to illness.
At the beginning of August 2003 he had completed his chemotherapy treatment and was schedule for surgery Oct 7th to remove the remaining tumour. The chemotherapy had successfully shrunk it in half.
During Adams first surgery they ran into complications. They had to remove his left kidney as well as a lot of his back muscles. The cancer was further along then they suspected. In total, the surgery lasted over 6 hours. Adam never really recovered after that. He began having breathing problems right away. Within 2 weeks he was back in for more major surgery. His bowels had obstructed. Within 7 days of his second surgery he ending up in ICU, he could no longer breath on his own. He remained on life support for 13 days until November 9, 2003 when Adam passed away.
Adam left behind his sister Valerie and brother Brett, stepfather Jamie. During our many hours of chemotherapy, Adam had a vision of someday telling other young men the signs & symptoms of Testicular Cancer so they would not have go through what he went through. We will fulfill his last dream with the help of family & friends, and spread the word.
Cancer is always something that happens to someone else. So, when I had a lump on the side of my neck in April of 2004, my only thought was – okay – this is not normal so I should see my GP. I was run through a battery of tests that showed nothing, so the diagnosis was Lymphadema which translates as “unknown swelling of the lymph glands” – something that goes away with time. All of my blood tests were normal, and there was no cause for worry. In August of 2004, the swelling was worse, and it was starting to affect the flow of blood to my face, so my GP decided that a biopsy (tissue sampling) was required. My expectation was that this would mean a needle sample of the area, but in fact it meant cutting out one of the lumps. The surgeons on the spot diagnosis was lymphoma – cancer. So, I started reading up on cancer to see what my chances were – I had the usual perception that cancer was a death sentence, and did not want to tell my family. It took a while for the pathologist to do a diagnosis, so it was mid September before my appointment with an Oncologist. My wife and I went to the appointment at the cancer clinic to discuss the diagnosis with the expectation of bad news. At this meeting, the Oncologist told us that I did not have Lymphoma, but instead had Seminoma – a much more treatable form of cancer. I was flying out that day on a business trip, and could only feel relief. Funny how having one form of cancer over another is a relief. When I got back from my trip it was time to tell the family. I was glad that the message was “I am going to have a rough 6 months, but I should be okay after that”. My son was understanding and logical while my daughter did not say anything – she kept it all inside and this was a worry. Two weeks later, I started chemotherapy – one thing I will say about the Ontario Health System, once they figure out what the problem is, they are quick to start treatment, particularly if it is a life threatening issue. Chemo was 9 weeks long – three cycles of three weeks each with the first week of each cycle involving treatment every day, and the second and third week having only one treatment day each. While not really a long time, it felt like forever some times – I did not have a lot of problems during chemo, but was glad when it was over. The results of chemo were dramatic – within the first week the lumps on my neck shrank, and the feeling that this was working was tremendous. I kept my spirits up by e-mailing friends about my situation so that everyone would be free to talk to me – something that I learned from a friend that had survived breast cancer. I had a few problems during chemo – I ended up in hospital once with an infection (chemo clobbers your immune system, and my white blood cell count dropped to zero) and once with severe back pain due to a medication that was supposed to help boost my white cell count. In all though, it was not that bad – something that surprised me as I expected chemo to be hell. In fact that is one message for people to learn – chemo is not that bad in most cases, and it really helps to have people around you providing support.
Diagnosed in August 1988 when I was 27, went through surgery and chemotherapy 3 rounds due to spread to lymph nodes.
I am now 46 and in excellent health, it was caught early between myself and my family doctor and I was referred to great specialists all the way through my ordeal....family doc, specialist who confirmed diagnosis and doctors at Wellesley Hospital in Toronto and at the Sunnybrook regional cancer centre were most professional and courteous and made the experience a little easier to deal with.
I had Testicular Cancer in 1993.. May.. I'd just like to share my story a little so that maybe you will realize that the control of your life is with YOU, not only the Doctors.. They are NOT infalible..
I was 38 when I saw a TV show here in Australia, that had someone shoiwng us how to check our Testicles and what to feel for. I had 2 children and married, and am still but with one addition.. a Grandson.. woohoo.. I wish you ALL grandsons.. I digress...
My GP is more like a friend than just my Doctor.. As with all us blokes, I was embarrassed to talk about what I thought was a lump on my right testicle.. Finally I plucked up the courage to ask him to check it. He said it was nothing, just where the tube comes out of the testicle.. OK.. Then I saw the TV show and they mentioned that you could get an ultra-sound to be certain.. Back to the Doc.. he said that I didn't need one, but if I wanted one, he would organize it...
I went for the ultra-sound.. guess what.. lying on the table I realized that there was an awful lot of interest about 1 part of 1 testicle by the Doctor who had been called in to check... hmm.. I asked point blank if it was cancer.. He hesitated and summed me up I guess, and then said Yes.. I handled it well then, it was telling my wife and kids that was the worst part.
Anyway, surgery, removal of offending round bit through a scar similar to an appendix scar, Radio Therapy.. all gone.. just follow-ups.
Are.. yes.. the Follow-ups... Part of that routine included further ultra-sounds.. a word of advice here fellas.. When you have an ultra-sound, they squirt warm liquid on the area they are going to run the machine over... I recommend you grab an extra towel (one of the ones they give you to wipe off the gunk later), and place it over the penis so that air does not get to the skin... It can save you and the operator, especially if a woman, a lot of embarrassing eye-contact. Trust me, just grab the towel.
Anyway, mine was a seminoma, and it had NOT spread.. I'm now 50 I volunteer to take phone calls from men who have been recently diagnosed here in Ozz or in New Zealand and talk them through my experience. The interesting thing I've found, is that once they're done with it, most men do NOT want to talk about it to other Men or kids... Not sure why...
