Robert

Penile cancer

When and where did you first notice signs of your cancer? Was there something out of the ordinary that prompted you to check yourself/ see your GP?

I noticed what looked like a small wart on my glans about May 2013. This suddenly doubled in size and began to look nasty while I was out of the country for a couple of weeks so I went to see my GP at the earliest possible date after I returned to the UK which was in early September, by which time it had doubled in size again.

Did you check yourself regularly or were you aware of the signs and symptoms of male cancer before you were diagnosed?

No, just had annual PSA tests.

How did you feel when you were first diagnosed? Did your feelings change during your treatment?

I recognised that there was a chance that this could be terminal so I put all my affairs in order, which actually took about four weeks, and I wrote out a guide to my son as to everything that he would need to do in the event of my dying (ranging from filing the probate to taking the library books back) and put that away in the safe. I actually found that exercise quite reassuring and then found myself taking a quite stoical approach to the next twelve months’ treatment. I knew all along that if it did not spread to the groin lymph glands then it could be overcome with surgery and/or radiotherapy. I had my lymph glands checked every time I saw a medical practitioner of any form! A year on I still feel the same. If it has spread after all then there is nothing that I could have done to prevent it, so get on with life.

Please give us a brief explanation of your treatment, any side effects you experienced and subsequent follow up procedure?

My GP, who was an STD specialist in her early career, diagnosed me immediately with penile cancer. I was referred to our County urinary specialists who took five weeks to see me and then do a biopsy, and then another three weeks before saying that the biopsy had been inconclusive and put me on a long waiting list for surgery to remove the ‘lesion’. In this time the ‘lesion’ had again doubled in size twice over. But I trusted my GP’s judgement and paid to have the ‘lesion’ excised privately and a full histology to be done (which interestingly had to be sent to the same county lab as before).

[as a side issue the excision got badly infected in the private hospital and I ended up on mega antibiotics and unable to drink over Christmas and New Year, although that’s not really relevant to the cancer story]

The histology results that came back this time were described by the surgeon who had done the excision, who was a urologist but not a cancer specialist, as somewhat confusing as they seemed to indicate both verrucous and squamous carcinomas, but he was content that he had left a clear margin around the wound and so was happy that his job was done. However, on my final visit to him a couple of weeks later I asked him about possible recurrence and he said he wasn’t sure. He then suddenly said that as I had paid for a full histology and we hadn’t really got one from the county lab, he would send everything up to St George’s in London, which is our regional centre of excellence for penile cancer, as they were looking for samples for their research programme, and that then we would be absolutely sure of a diagnosis.

Which is how, five months after the original NHS referral and more by luck than judgement, we learned from St George’s that I had Grade 2 squamous cell carcinoma and endemic PeIns and BXO and needed a full glans resurfacing procedure!

Being now back at square 1 with the NHS I decided again to pay to have the Glans Resurfacing done privately at the end of March (very expensive!) and only recently has that and the skin graft donor site healed and the surgeon is now ‘very hopeful’ that the cancer has not metastasised.

Was there a particularly difficult or distressing part of your treatment or your cancer journey?

Glans resurfacing is a pretty nasty operation. Does what it says on the tin, and very effectively. Although the glans healed fairly quickly (couple of months) it does now have a definite ‘frankenstein’ look about it, although it is fully functional. But the skin graft donor site on my thigh (10cm x 5cm) took months to scab over and heal, during which time I had to wear shorts and tracksuit bottoms, couldn’t ride my bike etc.

What is the most important thing your family and friends did to support you?

They helped me to carry on with everything that we would normally do – work, voluntary work, travelling, etc. We told all our family and friends up front that it was penile cancer but that it was beatable with major surgery and, somewhat surprisingly, none of them were phased by this at all. (We’d had two of our circle die recently, of MND and Leukemia, which I suppose had toughened us all up a bit)

Can you describe a particular Low/High point during your treatment?

I had two panic attacks in the hospital after the resurfacing op. I’ve never had those before or since and no-one could offer any explanation as to what triggered them. I think in hindsight it must have been the waiting for the surgeon to reappear to hear if the procedure had been successful (the grafts don’t always take). He was delayed for several hours before I had the first panic attack but only a couple of hours before I had the second one, after which he was able to tell me that it was all OK anyway.

Do you believe the experience has changed you as a person? If so, in what way?

I’ve lost a lot of my faith in the NHS. If I had not challenged their casual approach I could have been dead by now.

If any, what medical or emotional support would you like to be offered in the future to support you after your treatment ends?

I think there needs to be better integration between the private sector and the NHS for cancer patients. If you have to jump off the NHS to speed up your treatment you ought to be able to jump back on again afterwards. I couldn’t get an appointment back with the county urology team after my initial excision, but the private surgeon who subsequently did the glans resurfacing did say that he could have done that procedure on the NHS in Southampton, with only a three month waiting list.

What would be your message to other men affected by male cancer? What would be your message to their partners?

Act quickly, and never ever put off going to your GP. Mine is an attractive young mum but I have always felt confident talking to her about gout, piles etc and this time what I thought was a genital wart; she definitely saved my life.

Please leave any other comments you would like to share with us?

I think that the NHS system needs to use its specialist cancer centres more intelligently. Even though I was being tested for penile cancer my first biopsy only went to the County lab that is swamped with all sorts of general histological work. If instead that biopsy had been sent straight to the regional specialists at St George’s, which is only 70 miles away, then I wouldn’t have needed to have two operations and would have been better three months earlier.

What would also be really helpful would be for someone like ORCHID to maintain a list of surgeons who specialise in penile cancer on the website. There aren’t many who do glans resurfacing, penis reconstruction etc but there must be a dozen or more around the country. In my case, the private hospital that arranged the original excision recommended their top urologist, because they were just ‘excising a lesion’. When it subsequently came to the glans resurfacing, the specialist said that his job had been made a lot harder because of having to also resurface the scar tissue from the excision. He said somewhat pointedly that if the hospital had recommended him for the excision in the first place then he would have only had to have done the one op (and would have saved me a grand).

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