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Thursday, January 18, 2007

How He Saved his Manhood: Unnecessary surgery

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. The scan operator reported a mass 7 millimeters across [about a third of an inch].

Things moved quickly after that. In less than 20 days I would be in the operating room.

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

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."

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.

An old friend, naturopath Dr. Don Canavan, in Oregon, directed me towards scientific papers suggesting that MRI was far more accurate than ultrasound in showing the nature of a testicular lesion.

The Registrar I spoke to about this was dismissive when I quoted him the papers. But 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" -- a consulting physician -- 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 consulting physician 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 it was 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. If so, I might need two operations in succession -- if, after a few days, they found it was cancer.

I was stressed and now saw a biopsy - not an MRI scan - as the alternative to the operation.

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 consulting physician 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 doctors' 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.

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

Nigel’s Advice:

* 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.

* 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.

Read the fuller story.

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