John's story

John was diagnosed with bowel cancer in 2011. After having part of his bowel removed to take out the cancer, he was referred to an oncologist who asked if he would be prepared to participate in a clinical trial.



About five and a half years ago, I noticed that my bowels were not behaving as they had always done in the past, things weren't quite right. So I spoke to my doctor about it, and he immediately told me that I needed to have a colonoscopy to find out what was going on.

The surgeon who was conducting it said, you've got a serious problem. You and I need to have another meeting tomorrow in the operating theatre where I will remove what I believe to be a bowel cancer. I was then asked to see an oncologist who told me that because of what they found, he believed that I should have a course of chemotherapy.

He told me that the standard course of chemotherapy was twelve doses of the chemical over a period of 24 weeks. And he then started to talk about clinical trials, and he said that this SALT trial was in operation and that they were trying to find out whether or not perhaps half that amount of treatment would be just as effective. He gave me a heap of reading material as to the pros and cons of it and asked me to go away and think about it, which I did, and discussed it with my wife and we agreed that it seemed like a good idea at the time. The information talked about ethics committees at universities and people who would have examined what was proposed in great detail before it was approved as a trial, and so I had every confidence that anything that was being done differently still had the backing of the scientific reasons for doing things.

I believe that, you know, we're here to look after our fellow man, if you like. And the oncologist and the trials staff explained to me that it would potentially benefit others down the track and it seemed to me that was the right thing to do. The way that I had to approach it was simply to turn up for the for the chemical to be infused, irrespective of whether I did it for 12 infusions or only 6. The only difference from being in the clinical trial or not was that I would have an extra level of people to talk to, if you like. I would have my GP obviously, I would have the oncologist. But on top of that I would also have the clinical trial staff, and that's one thing that I found to be of use. I was better able to ask them questions

about what was going on, what this meant, what that meant. Because of that, they were able to deliver that comfort, and I think that was vitally important.

One of the clinical trial nurses had been a cancer survivor as well. So she had some

perhaps even better rapport, if you like. Medicine is advancing all the time, but it can only advance with help from the patients. It's all very well the scientists and the doctors

coming up with new treatments, but until they try those treatments, then they're not going to know with any certainty whether those treatments will be successful. And I think there's 2 ways of looking at that, one is to say, well, I'm doing the right thing, but the other side of the coin is that there is the potential that there will be some sort of benefit. All my results have been positive and I have no recurrence of the cancer I've had no issues with anything more.

Because I was in the clinical trial I had probably more tests than I might otherwise have had.

The CT scans went on a bit longer, another a couple of years and I guess that was another comfort, if you like. If anything, it's made me more inclined to get on and do the things I want to do that I've been putting off. Being able to disappear for a long weekend or a week or so with the caravan if I feel like it, being able to do the things I want to do, like sit and read a book for the afternoon, if that's what the mood takes me.

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After having part of my bowel removed to take out the cancer, I was referred to an oncologist who explained that the standard treatment for my situation was a program of chemotherapy with 12 infusions of the chemicals over a 24 week period. He gave me a long list of possible side effects to take home and read.

The oncologist then asked me if I would be prepared to participate in a clinical trial. The aim of the trial was to see if half the treatments, that is 6 infusions over 12 weeks, would give similar results to the longer treatment. Half the trial participants would get the full course of treatment and half would get the shorter version. He explained that the trial would not benefit me in any way but would help future patients. The thought being to shorten the time of dealing with any side effects as well as reducing the intrusion into patients daily lives. I took home further reading material explaining the trial process.

After discussion with my wife I agreed to participate in the trial. I guess my reasons were threefold. Firstly, I was happy to be in something which might further medical research to help future sufferers. Secondly, it appeared that participants would be receiving even more attention and monitoring than usual, which was comforting, and thirdly, since I was apprehensive about the potential side effects, having heard stories of others who have suffered bad reactions, I thought the chance of the shorter treatment was appealing. I was not worried that the shorter treatment would not be adequate as I felt sure the various ethics committees would not have approved the trial if there was significant risk to any patients.

As it turned out, I was allocated the full length treatment but my apprehension about the side effects was unfounded as I came through the treatment without much grief. I was happy to be very sympathetically and thoroughly monitored both during the treatment and for the years afterwards. The clinical trial staff were always there for me if I had any queries, and although I could have gone to the oncologist or the oncology nurses, the clinical trial staff always seemed to be better able to make time to talk through any concerns I had.

By coincidence, I have recently become friends with another participant in the trial, well after our treatments had been completed. My friend received the shorter experimental treatment, and her experience was similar to mine in terms of the positive experience. Perhaps because she was receiving the experimental version of the treatment she seems to have been even more closely monitored than me, which is probably as one would expect.

I would certainly encourage anyone who is invited to participate in a clinical trial to be prepared to be involved. We are all happy to receive the benefits of the most up to date treatment for our various ailments, but an important way these treatments can be developed and improved is by those who can help the doctors and scientists to test their new ideas. I feel you can be assured that you will be well looked after during the process.

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