How I saved my manhood

When a scan showed a lump in his scrotum, Nigel Summerley was told it was probably cancer and he'd have to lose a testicle. He describes how he took charge of his treatment - and kept his tackle intact

Shock Number One came when I went for the ultrasound scan. Four weeks before that, I'd gone to my GP because I had a vague discomfort in the area of my right testicle. She'd examined it and sent me off to my local hospital to arrange a scan.

For some reason, I thought the scan would show nothing. "Can you see anything?" I asked the scan operator, knowing he was probably limited in what he could tell me, prior to filing his report. "There's something inside there, but I can't tell what it is," he said. " It's seven millimetres across."

"So could it be cancer?" I prodded.

"It can't be ruled out," he said.

By the time I got outside Battersea's Bolingbroke Hospital, I was numb. In the course of a brief conversation, I'd made the transition from being pretty sure I was OK to feeling there was a good chance that I wasn't.

Things moved quickly after that. In less than 20 days I would be in the operating theatre. And in less than a month, the story would be almost over.

Shock Number Two came six days after that scan, when I went for an appointment at the urology department at St George's Hospital, Tooting.

The registrar told me he and his senior consultant colleagues had studied my scan and they had unanimously agreed that the best course of action was that I should have my right testicle removed.

"When do you want my decision?" I asked, stunned.

"Er, now," he said.

"But I can't make a decision now," I said.

"Then it's best if we proceed as though you've decided to have it done. You can always change your mind."

"When would you do it?" I asked.

"Next week."

The scan had shown a "lesion". They couldn't be sure it was cancer, but couldn't be sure it wasn't. So they didn't want to take any chances. Their plan was to remove my testicle as soon as possible, slice it up and biopsy it to determine what the lesion was.

"Isn't it possible to do a biopsy on the operating table?" I asked. My girlfriend had found references to such a procedure on the internet.

But the registrar's answer was: "No, because it takes three or four days to get the results."

"But what if I have the testicle removed and then find it wasn't cancer? "

"Most people are just relieved to know they haven't got cancer."

"If I had it removed, then found out it wasn't cancer," I said, "I think I'd be angry."

This didn't register with the registrar.

"Are you really attached to it?" he asked (yes, that's what he actually said).

"Well, yes."

"It doesn't make that much difference," he said, referring to an orchidectomy (removal of a testicle). "Partners don't really like to look at them anyway."

Neither Shock One nor Shock Two should have been shocks. I'd studied human biology and medical sciences, and had once worked as a health writer for over a decade. And, like most of us of a certain age, I'd seen friends die of cancer.

The truth is that I was getting in a terrible state, even though I knew testicular cancer was one of the "best" cancers to have - it is almost always possible to treat effectively, if it's caught early. Still, the fog of fear was coming down.

From the start, I got much more information from outsiders than I did from the hospital. Don't get me wrong - I'm not knocking the medical staff. They all did their best for me, within the constraints of the system, and they were utterly professional. But it was up to me to see what they could offer. I wanted to be the decision-maker, and ultimately I was.

It was an old friend, naturopath Dr Don Canavan, in Oregon, who directed me towards scientific papers suggesting that MRI was far more accurate than ultrasound in showing the nature of a testicular lesion. One study claimed a 100 per cent success rate in discerning between a benign tumour and a cancerous one.

The registrar I spoke to about this was dismissive - MRI was never used here for testicular lesions, he said. I quoted him the papers, but he said they were not from "top five" journals. This wasn't wacky, alternative stuff, I said, this was the likes of the World Journal of Urology.

He promised to look into it and we'd talk again - which we did. In that next chat, he said maybe I'd like to speak to the "organ grinder" (another unfortunate choice of phrase, perhaps) rather than the "monkey". He meant talk to a consultant, maybe the man who was going to cut off one of my testicles.

It was now 11 days since the scan and a week before the date we had provisionally agreed for an operation.

When the consultant called me, we went through the same conversation about MRI - he wasn't impressed but asked for the references. This was the most bizarre episode of my little adventure - kneeling on a dirty pavement with my mobile and laptop, reading out scientific references to a medical expert.

Now, for the first time, the genuine possibility of a biopsy while I was under general anaesthetic entered the conversation. The consultant said that itwas possible to do it; they could get a yes-or-no result on whether it was cancer, but I had to be aware there was a "grey area" of 10 to 15 per cent in such results that could only be resolved by further tests. Another consultant later told me that the grey area could be 30 per cent.

In the event of a grey-area result, unless I was happy for them to remove the testicle (which they would prefer), I then ran the risk of two operations in succession - if, after a few days, they found it was cancer.

The consultant reiterated that even if they did an MRI scan, they would still recommend an operation. But he said he'd talk to the radiography department and call me again the next day. He didn't call the next day - and at this point things started to get confusing.

I was stressed and now saw a biopsy - not an MRI scan - as the alternative to an orchidectomy. I got hold of the registrar and said I would go for the biopsy option; if it was a grey-area result, I would take the chance and risk a second operation. I cleared my diary for the following week for the operation and recovery.

I was all set for the biopsy when I got a call from the hospital saying I had been booked in for an MRI scan in three days' time - the day before the operation.

By this time, I was talking to a second consultant, the one who would actually operate.

"Why have they now arranged an MRI scan?" I asked.

"Because you really wanted one."

"But you'd still recommend operating?"

"Yes."

"When?"

"A week later."

I couldn't face rearranging work yet again and I was now mentally prepared for the biopsy. "Let's just go ahead with the operation and find out what this thing is," I said. "But unless it's definitely cancer, I don't want the testicle removed."

They agreed and I had the operation.

The first thing I did when I awoke from the anaesthetic was to count my testicles. I still had two.

The "lesion" had been removed and identified as a benign capillary haemangioma (BCH) - only five testicular BCHs had ever been reported worldwide, so it was rare - and harmless, like a blood blister. The consultant was sure it wasn't cancer, and I got the all-clear when the final biopsy results arrived the following week.

But the fact remains that if I had taken the medics' initial advice without question (as many of us do), I would now have only one testicle - plus the knowledge that the one I had lost had been healthy.

Five weeks after the op, I put this point to Mr Chris Anderson, consultant urological surgeon at St George's. He stressed that my case had been exceptional - there was no way anyone could have foreseen that this would be a BCH.

"We see about 15 cases a year of testicular lumps and the majority turn out to be cancer - they are hardly ever benign," he said. "We have done two other operations like yours this year, one turned out to be cancer and one didn't. In your case, it was difficult to tell from the scan what might be happening.

"If you have got a tumour in the testicle, you want to know you're taking it out intact. Testicular cancer spreads in a predictable way, up to the large vessels of the abdomen and up to the diaphragm. The moment you break the wall of the testicle, you've changed this predictability."

In other words, what they agreed to do to me was potentially dangerous; they had every reason to believe I had cancer - and were doing their best to save me.

But, as ever, I thought I knew better - and, thankfully, this time I did.

Keeping control: what you need to know

* If you have symptoms, don't delay in getting them checked out.

* If it's bad news, don't panic. Don't waste energy wishing this hadn't happened - deal with what's happening now.

* Don't suffer alone. Gather support from those close to you. Talk to your partner, family, friends and colleagues. The reactions of my children, mother, girlfriend and friends inspired me.

* Work the internet, read and find out as much as you can about your condition.

* Talk to people who've been through similar experiences. The fortitude of Desmond Mason, my neighbour in hospital, who had had a tumour removed from his penis and was having reconstructive surgery, humbled me and made me realise I had very little to worry about. Colin Grove, a friend of a friend, was able to advise me about life with one testicle (not too bad, apparently) and the nitty gritty about life immediately after the operation.

* Be prepared to be you own best advocate, though this may be one of the times when you are least prepared to do so. If you're not happy about the treatment your medical team has suggested for you, then say so.

* Try not to be intimidated by doctors and don't be afraid to ask questions. If necessary, make notes when you go for an appointment, or take someone with you.

* If you're unhappy about anything about your treatment, let the medical staff know about it.

* Don't be afraid to cry.