Originally published in October 2003 icon
Testicular Cancer - The Facts | The Bob Champion Trust
No Pain - No Gain
Jamie Spencer´s battle with testicular cancer resulted in a whole new lifestyle. He is yet another example in our long list of cancer survivors.
When only 26, Jamie Spencer was diagnosed with an aggressive form of testicular cancer.
He was doing well as a quantity surveyor and had just bought his first house in Nottingham.
But now it seemed that he might not see another birthday.
Jamie´s hospital experience held much raw misery and miscommunication.
But eight years on he is fit, well and fulfilled as a Development Co-ordinator for Macmillan Cancer Relief.
He´s said to bring the style and panache of a Frank Sinatra to the cause of testicular cancer - which previously people shrunk from even mentioning.
Here´s Jamie´s story in his own words...
"As 1995 dawned, my girlfriend and I clinked glasses, wishing each other a Happy New Year. It still staggers me that just three months later I was diagnosed with cancer. One day I came home from work, had a bath and felt a lump on my left testicle. Perhaps it was the pessimist in me, but I decided at once it was something nasty. There was no pain, no swelling, no heaviness - just the lump. I left it for a few days, hoping it would go away. It really had just appeared: I always showered at the gym so I´d have noticed if it had been there any length of time. Four days later my GP told me it was a cyst, to stop worrying but come back in a week if I still had concerns. I now know that there are 1700 cases of testicular cancer a year. You can have about 26 different kinds of lump on your testicle and only one is cancerous. So the odds are that a GP will see only a single testicular cancer patient in an entire career.
If he went through that crap and is alive now then I can do this too
The doctor I saw on my second visit took matters more seriously and arranged for a speedy ultrasound appointment. At Queen´s Medical Centre they stuck me in a backless gown, traipsed me through the hospital with my bum on show, then sat me in a room with six pregnant women, doubtless wondering what I was doing there. Lying there, frightened, with my testicles gelled up, I kept thinking, this can´t be right, this can´t be happening. Afterwards the technician said he couldn´t tell me anything. So what do you do? You go straight back to work and carry on, which in my case meant keeping the profits of my building company employers as high as possible. And in the light of what was happening I began to think my work was rubbish.
A couple of days later the phone rang. It was a Senior House Officer from QMC telling me baldly that there was a hospital bed waiting for me. ´Right´ I said, ´What´s that for?´ ´To have your testicle removed. There´ll be a letter in the post. See you Thursday. Goodbye.´ The whole exchange was utterly surreal.
You may think it reasonable that at 26 I had never heard of testicular cancer, which at this stage had not been mentioned. But knowing what I know now, it isn´t reasonable because this cancer can happen at 15. I felt so isolated checking into the hospital ward with five other men of 60 plus. There was nobody to relate to and no information to read. Bob Champion´s film was shown on TV either just before or just after my operation. It took me two weeks to pluck up the courage to watch it on video and conclude ´If he went through that crap and is alive now then I can do this too´. Three doctors came to see me before surgery: one said I was having my testicle out, one said they were going to take a look at the lump and the third that they were going to remove just the lump.
I remember going down to theatre scared to death and waking in recovery with a nurse who didn´t know that I didn´t know my testicle had been removed. I put my hand down, counted as far as one and burst into tears. Back on the ward I felt I could walk to the toilet and afterwards told a nurse that there was ever such a funny slurping noise all down the corridor. It turned out to be my scrotum, which apparently sort of sticks together then opens as you walk, for just a couple of days after a testicle is removed.
My cancer was a teratoma, the virulent form that affects young
Nobody, anyway could have prepared me for my surgeon appearing at the foot of my bed. He shook his head and tutted, told me in front of five other patients that I´d got cancer (which was the first time the word was mentioned), then asked my family and girlfriend to accompany him to another room before drawing the curtains around me and vanishing. I´m 26 and I´m lying by an open, fifth floor window convinced I´m riddled. My first thought was to jump. Meanwhile my family was told on the quiet that the cancer was very serious. They then had to come back and sit with me pretending they were crying over the same thing that I knew and was crying about.
Bad news, badly broken, like lack of information in the first place, can pretty much destroy your coping mechanisms. That´s why I now feel so strongly about patient information being given in the right way for each person. I went home three days after surgery and within the next week had a CT scan to see if the cancer had spread followed by an appointment with consultant oncologist Dr Mike Sokal. He was pretty direct: my cancer was a teratoma, the virulent form that affects young men. He told me it had also spread to lymph glands underneath my ribs and I´d got a lump there already. Over the next six months I would be having four weeks of intensive inpatient chemotherapy at Nottingham City Hospital. But, encouragingly, he added that even with the secondaries I had a 96-98 per cent chance of a cure, though if the four lots of chemo didn´t work I might need more surgery.
Sitting alone at home for two weeks before chemo started, morbid thoughts went round in my head: I´d got cancer that had spread and if it´s spreading it must be bad. If it´s bad I must be dying. I remember high tension during that first day´s chemo when I arrived to have my bloods taken at 8.30 am but waited until 5pm to start the process after a nightmare with needles which I´ve always hated. They put a Hickman line in my chest so that the drugs could be delivered directly into a foot of white plastic pipe.
Halfway through that first week I met Gary, who, albeit older, was going through the same as me. I was told he´d had a secondary too, in his neck, but when I looked, it had already gone. And that was just three days into his first week of treatment. ´Bloody hell,´ I thought, ´this works´ and at once felt more confident. The first two weeks of chemo were easy. I didn´t feel tired or sick but between each bout I was to have a top-up intravenous injection. Immediately after the second one my pubes fell out in one go. I remember just laughing - it was unbelievably comical. During the second lot of chemo I started to feel ill and was sick occasionally.
Bloody hell, I thought, this works
The third week of chemo, delayed because my white cells were knocked for six, was the worst. Even the smell of food made me throw up. I lost a stone and a half throughout this period and most of it in this one week. They finally threatened me with intravenous feeding which is when I then took on cornflakes - absolutely all I could eat. To this day I can´t eat them because of their association with that horrible time.
Back home I just sat with my bedside friend the bucket, weakened, sick and totally hairless. I looked yellow and ill with sunken cheeks - not from the cancer but the chemo.
It took about a year to start eating properly again, but I celebrated my first annual CT check up by munching my way through the Harry Ramsden Challenge - a massive portion of fish and chips. Now I eat and exercise exactly the way I did before - bags of fruit and veg and three workouts a week at the gym. Healthy eating didn´t work for me in terms of preventing cancer, but I have always believed that being healthy helped me through a horrible experience.
After my final week of chemo I overrode my oncologist´s advice and went back to work drugged up on anti-sickness tablets, still with the pipe sticking out of my chest. I couldn´t stand being trapped in four walls any longer. It was clear my colleagues thought: ´Oh well, he´s back at work so it can´t have been anything serious.
A further scan followed and then I went back to see Dr Sokal on what I call Oddball Day - a clinic for all those blokes with a left one or right one missing, or in some very rare cases, both. My appointment was at two pm so when it got to five o-clock and I was the last person left waiting, I´d lost probably another stone and a half in sweat, convinced the chemo hadn´t worked. Dr Sokal popped his head round the door and must have seen that my blood was in my boots because he told me at once I had the all clear. So that day became the best day of my life.
For three years I had monthly checkups, blood tests and x-rays. Before each one I would get quite nasty with nerves and for two weeks afterwards I was skipping through the tulips. Then I went three monthly, six monthly and now I´m just seen once a year. The next big hurdle will be the 10th year when Dr Sokal says he´ll discharge me for good. I´d actually quite like to have annual checks forever but he´s very confident that the cancer has gone and that he can let me go.
I decided for some strange reason to keep a video diary and that really helped, because I had someone to talk to
About six years on I was offered a prosthetic testicle. I know men who´ve had them fitted straight after surgery, which wasn´t raised with me at the time. Being cut again and having a false piece of rubber manually shoved into the right place, then not being able to drive for a week put me off. I couldn´t see the point after years of walking around with one testicle and everything still functioning properly. As for having children, I did go to the sperm bank though it´s not as easy as it sounds to go into a little side room with your magazine and pot. Chemo doesn´t always destroy fertility and though I don´t particularly want kids - never have - I would tell other men to seek the chance to deposit sperm before treatment because some hospitals may not offer it, or may assume that since you´re of a certain age kids are not an issue.
About two weeks into the whole cancer episode I decided for some strange reason to keep a video diary and that really helped, because I had someone to talk to - albeit myself. I never dreamed how useful the record would be, because now I show clips from it in schools, colleges, businesses, at presentations: people really relate to a personal story and the silly, little things that make them laugh. There´s a bit where I´m rubbing my eyes. I´m sat there bald, no hair, a stone and a half lighter than I had been, looking really ill.
My eyes are all puffed up and I just say ´As you can see I´ve got hay fever. I got bored with cancer so I thought I´d have something else as well.´ It´s good to use comedy. I get people laughing with me at a horrible situation, which they all know wasn´t in the least funny at the time. It´s also good to portray what I looked like eight years ago because it makes the point - this is the same person and just look at how much better he is now.
I first became involved in raising awareness about testicular cancer through one of the nurses who´d become like a second mum to me. She asked me to speak at a school, so my debut was talking to 16 year old boys about their bits. Surprisingly they didn´t laugh or pull faces, but were really interested. So that was the start of my drive for information, education and communication. I strongly believe that we should be educating kids so that if at some point in their life they hear the words ´You´ve got cancer´ they don´t collapse on the spot, but ask ´So what do I do to get through it?´
My debut was talking to 16 year old boys about their bits
I´ve talked to nurses on an oncology foundation course, giving the patient´s perspective and in 1998 I started a local testicular cancer support group to which we added a website and 24 hour helpline. We produce an information folder which in Nottingham, Derby and Leicester is given out to every newly diagnosed patient. My advice to other patients and relatives who take up the cause is always try for small, but important changes. At my clinic check up last year a nurse I didn´t even recognise said ´Ah, Jamie, follow me!´ and took me to a table covered in brand new men´s magazines. She´d heard me complaining that 60 men waiting on oddball day have nothing to read but Woman´s Realm. This nurse had taken note - so clearly the word is getting around.
I had been working voluntarily for Macmillan and other agencies for more than five years when, last autumn, a new full-time post came up to develop self-help and support groups as well as running Cancer Voices. That´s a programme to help patients, carers and health professionals develop the confidence to promote their ideas and opinions and so improve the health service. Leaving the building industry I took a drop in salary but I absolutely love the job. My perspective has completely changed since having cancer. I keep a diary with all my engagements logged well into the future. But I will only ever prepare for meetings and presentations on the very morning - because anything may happen. For the same reason I fill every hour of every day and I never put off what I can do at once.
I´ve been to America six times which I never thought I´d do and in 1998 I began running seriously.
On one marathon I spotted Dr Sokal among the spectators and ran up to shake his hand. He took mine and ran with me for about 200 yards. I´m a lot more emotional than I used to be and I just had to say ´Thank you for saving my life´."