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Having an amputation

Doug McIntosh's story of having sarcoma

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Ten years ago, when he was 37, Doug McIntosh was diagnosed with a very rare type of soft tissue sarcoma called an epithelioid sarcoma. This type of cancer can be aggressive and his doctors felt that Doug’s best option was to have the affected area, his right forearm, amputated. This is Doug’s story of how he was diagnosed with a sarcoma, his surgery and life after an amputation.

Something wrong?

I had a lump a bit like a wart on my middle finger. It never seemed to clear up, but I wasn’t bothered by it. Still, when I was on a specialist diving course for paramedics in Devon, I showed it to the course leader. He had a look at it and said that he could also feel a lump at the bottom of my finger too. When I got home to Aberdeen I decided to see my GP. After examining it, he thought it was just a cyst and probably best left alone. I was happy with his recommendation, but a few weeks later I felt that I wanted to have it removed. I went back to my GP and he organised for the lump to be removed at the local hospital.

I went in for day surgery and because I was curious, I asked if I could watch the surgeon remove the lump. He agreed. This meant that I was fully aware that when he first saw the lump, he didn’t immediately start taking it out. Instead, he asked for the whole of my arm to be anaesthetised and then went to get a colleague. The new doctor advised me that the operation would be larger than first planned. The surgeon also told me that I would need further investigations. I wondered if this meant there was something wrong, but didn’t think too much of it until about a week later when I had the dressing on my hand changed. That was when I saw just how much tissue the surgeons had removed during that first ‘minor’ operation.

Two weeks after the lump had been removed, my GP rang me to tell me that I needed to go back to the hospital to ‘Clinic D’ for an outpatient appointment. It was only when I arrived for my appointment and found that ‘Clinic D’ was actually the cancer outpatients clinic that I considered the possibility that I might have cancer!

My diagnosis and treatment

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A team of doctors, including an orthopaedic surgeon and a cancer specialist, were at my outpatient appointment. The team explained that I had an aggressive type of soft tissue sarcoma and advised me that I had three different treatment options. I could have no further surgery and they would monitor me, or I could have further surgery to my hand. Or I could have an amputation of my forearm. They were very clear that they thought having the amputation was the best option for me. Although I was shocked, I could see that in terms of survival this was my best chance.

As I had thought that I was just attending a routine outpatient appointment, I was on my own. My initial reaction was that I wanted to hide the news from my wife and three children, but I knew this wasn’t possible. Later that night I told my wife that I had cancer in my arm and needed an amputation. My wife went to pieces, and her obvious distress alerted the children that something was wrong. Even though I don’t think they really understood about either cancer or amputation, they too were inconsolable. I can honestly say that this was the absolute worst point in my entire cancer ‘journey’. I felt so powerless and out of control.

Waiting for the surgery was tough too, and I had plenty of sleepless nights. But by the day of my surgery, just over a week after my diagnosis, I was feeling pretty positive. I saw it as a life-saving procedure and had no doubts that I was doing the right thing.

After my operation

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I experienced phantom limb pain (feeling pain in the part of the limb that has been removed) as I had been warned I might, and also had excessive sweating from my right armpit. I ended up needing a nerve block to stop the sweating, but physically the main problem I had was adapting to having lost my dominant hand. It was the mundane things that caused the biggest problems, like being able to butter some toast or tie my shoelaces, but gradually I learnt to use my left hand. I was also given a prosthetic limb that I could use when I needed to.

Psychologically, I was lucky never to experience the depression that I know can affect many people when they have had an amputation. I think setting myself goals, like learning to sign my name with my left hand, helped me to find a positive focus. In addition I had, and still have, 100% support from my family, and great support from both my orthopaedic and cancer doctors.

I‘ve always been sporty, but after my operation I decided that I would use my love of cycling and running to raise funds for various cancer charities. I have taken part in a number of marathons, and I was also the first upper limb amputee to cycle from Land’s End to John O’Groats and cycle around Britain. Having had an amputation may have slowed me down, but it has not and will not stop me from doing anything I want to do.

Factfile

  • Epithelioid sarcoma is extremely rare and is part of a group of cancers called soft tissue sarcomas
  • Soft tissue is a term that doctors use to describe all the supporting tissues in the body, apart from the bones
  • Soft tissue includes fat, muscle, blood vessels, deep skin tissues, nerves and the tissues that surround joints (connective tissues)
  • If the cancer is in an arm or leg, where possible the doctors will want to do limb-sparing surgery - removing the cancer, but not the arm or leg - but sometimes amputation is the only option
  • Radiotherapy and chemotherapy are also often used to treat soft tissue sarcomas

More information

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Updated: 28 September 2009