Steve's Seminoma struggles...

My story is older that this newsgroup no doubt. Sometime in early/mid 1991 I began to get a sharp pain in my right testicle. It could happen when the folds in my jeans pressed against it, and it felt like I'd been kicked in the balls by a horse. I went to my GP who examined me and could find nothing, although, my reaction during this examination could leave nobody in doubt as to the amount of pain I could be in.

I returned to the GP at intervals of 2/3 weeks for months. Always the same result. A very painful examination revealed no lump, so no problem.

After six months or more I was sent to see a specialist at a large hospital in Central London, directly opposite the Houses of Parliament. (IE St Thomas's Hospital). Here the consultant examined me for what seemed like seconds. I say seemed but in fact he did examine me in the quickest time that you could imagine. The only thing I could really remember him saying was "Don't worry Mr. Potter, you have not got cancer".

I was still not satisfied and kept returning to my GP for many more months. Eventually some 9 or more months later he agreed to send me to a different hospital and a different specialist. This time I went to the Middlesex Hospital in central London were I saw a specialist called Professor Blandy. This was now July 1992.

He examined me and of course because he could not find any obvious lump, he described my symptoms using a Latin expression. What does that mean I asked? "Oh", he replied, "When we are not sure of a problem we slip into Latin to make it sound better, what I said means that you have an unidentifiable source of pain". But, in his favour, Professor Blandy also said that if I was worried he was paranoid and he sent me off for an ultrasound examination.

The doctor who performed this examination was obviously worried by what he saw because he asked me to wait while he dictated some notes then he gave the notes to me and sent me back to see Prof Blandy.

I was on the slab within seven days for exploratory surgery +/- an orchidectomy. The surgeon made it clear that he intended to have a look at the testicle and if he thought that there was a malignant tumor he would remove the whole testicle, since cutting into it could lead to it spreading.

I asked Prof Blandy, before the operation, about the need to save some of my sperm. I was with my then girlfriend and now wife, who happened to be a nurse at the Middlesex hospital, and having a family was always our desire. I was assured that there was no need to save sperm since, even if an orchidectomy was performed, my other testicle would be able to produce sperm.

Early in August 1992 my right testicle was removed. When the results came back from pathology, it turned out that I'd had a malignant seminoma. I was required to come in for a CT scan in October and again in January and this second scan revealed secondary tumors in the lymph nodes leading from the testicle that had been removed to my kidney.

A course of radiotherapy followed. This was a pretty standard dosage but, being a big man, the area that was zapped was quite large. I was violently ill on the second day of treatment, unable to even keep a glass of water down. However, since the completion of the radiotherapy course in March 1993 there has been no further recurrence of the tumors.

Now, many years later I have discovered that my remaining testicle has failed. It produces no sperm nor does it produce any testosterone. Our plans for a family have been shattered, because we have no frozen sperm. There is no way for me to know whether my remaining testicle has ever worked. My wife and I feel that we've been left to just get on with it.

I have always spoken openly about my experience. Throughout my campaign to receive treatment all blood tests returned a negative result, reinforcing the opinion if doctors that there was nothing wrong with me. I have no idea why this was the case but that is what I was told.

I know that by being open I have helped another, without ever meeting him. My wife now works in a Sexually Transmitted Diseases clinic, and she described my experiences to one of the doctors on the staff. Not long after this he spoke to her saying that he'd had a young man present with symptoms very like mine and remembering what she'd told him about me, sent the man for a Ultrasound which revealed a tiny tumor. Hopefully, he was treated a little quicker than I.

I found that talking about the issues helped me to deal with the cancer and the fact that one of my testicles had been removed. However, dealing with my subsequent infertility has been far more difficult. I become very tearful and distressed at times and am subject to mood swings that I did not have as a younger man. I wonder about the point of my existence and purpose of my life. I am also left to wonder what if I had been diagnosed more quickly? What if I'd had sperm saved? What if my left testicle had been protected properly during radiotherapy?

It's a long road, but, I hope that I'll get there.

Cheers Steve


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