Experiences of melanoma
Stage 3 Patient Number Two
My husband's mole had been vaguely troubling him for about six months before he decided to go and get it checked in the early spring of 2004 – don’t we wish he had acted earlier. Thankfully, his doctor referred him for a biopsy immediately although staff changes and general inefficiency meant we had to keep chasing to get the appointment and then the results. Malignant melanoma was confirmed and he was referred to Selly Oak in Birmingham for a wide leg incision in April that year. That showed a tumour 1.2 mm thick with no ulceration putting him in stage 1. He was offered a place on a trial of sentinel node biopsies but we were told that there was little evidence these made any difference to ultimate survival rates, and that there was no guarantee we would be in the SNB group rather than the control, so we decided against it. Like most others in that situation, we were horrified at the very mention of the word cancer and terrified that he was going to die. But the prognosis for that thickness is actually quite good – around 80 per cent five-year survival rates – and as time and a series of reassuring check-ups went by, we put it to the back of our minds.
Four days after his 50th birthday, just as we were discussing how early we could afford to retire and do some travelling, that all changed as a routine check-up found an inflamed node. We were quickly back to Dr Marsden in Birmingham who found two swollen nodes, a scan uncovered another couple: the start of an escalating pattern. He was finally scheduled for lymph node excision in his groin at the start of December – we thought that was an excessively long delay but were told it was deemed within the acceptable bounds. Because there were so many swollen nodes, the excision was very substantial – a record, I think, for Dr Singh at Selly Oak – taking out 36 lymph nodes of which 19 were positive.
The physical recovery from the surgery went well: my husband is very fit and very determined so was up and walking around the hospital virtually the day after the surgery and, when he came home a week later, he immediately started on a regime of walking two or three times a day with rest in between. That meant he had no complications after the surgery and he started back at work in the new year. Mentally it has been rather more of a struggle, however. I had been scouring any survival statistics and melanoma patients’ stories I could find searching for something which was not unremittingly bleak. All the charts I could find stopped at just two or three affected nodes and the statistics for these were horrific enough - five-year survival rates of 20% or less – so with 19 affected it must be even bleaker. Mr Marsden couldn’t offer much more hope. There were no open trials of anything we would be eligible for and he advised against interferon saying it made you feel awful and had no noticeable impact. We asked for a second opinion – Mr Marsden was very happy to refer us on – and we say Prof Patel at Nottingham who was equally nice and helpful but also equally unable to suggest any other kind of treatment, never mind a miracle cure. My husband debated asking for interferon anyway on the grounds that it was better to be doing something, and we asked for a second but decided against it.
He did ask for a scan, as recommended by Prof Patel, which we had about six months after the initial op. That showed some signs of swollen nodes so he had a biopsy, which failed to get enough fluid to tell if there was anything sinister, and was going to have an ultrasound-directed biopsy when the consultant said his leg also started to swell and he developed lymphoedema, which we now know was pretty much inevitable given how much of the lymphatic system was taken away. I wish we had been warned of this during the follow-ups for the op as he might have been able to do something to prevent it becoming such an issue. In fact, getting an appointment at the lymphoedema clinic took longer than for the melanoma although follow-ups and monitoring now are very good, as are the rather natty – and free - black tights which he has to wear all the time to keep the swelling under control. We have also gradually got back to living a normal life, albeit that there is rarely a day when I - and even more so he – doesn’t think about it.
Eighteen months on from the operation, he has had no further problems
which is good though he tends to measure out how much of that dreaded
five-year survival period has gone and therefore how much is still to come.
He is having no further treatment and, having had a scan last year – as
advised by Prof Patel – which showed up some minor changes which were
exhaustively examined then found to be nothing, he thinks he may not opt for
these ‘reassurance’ as they can be anything but.