Never say die: Chris O'Brien's story

Question: When you first began to show symptoms of being seriously ill, did you suspect the worst, or was the diagnosis a shock?

Chris O'Brien: I didn't suspect I had a brain tumour. In fact, the day I went into the RPA emergency department I thought it may have been meningitis. Although my symptoms didn't really fit that either. When I was told it was a brain tumour I wasn't surprised.

Question: Hi Chris, so glad all is going well. My Dad had a brain tumour removed two years ago — what type of tumour is yours?

Question: How many operations have you had to remove the tumour?

Chris O'Brien: I have now had two. The first on November 30, 2006. That operation left a couple of pieces of tumour behind because the surgeon was concerned he might cause partial blindness if he removed them.

They didn't go away with the radio and chemotherapy I had after the surgery and in fact, at my most recent scan there is evidence they have started to regrow. The second operation was April 16; it will be two weeks tomorrow.

Question: Had you considered any alternative therapies or did you trust your surgeon colleagues to be the only solution?

Chris O'Brien: I am a big believer in alternative and complementary treatment. Their benefits are largely unproven. I have been having a special form of electrical acupuncture which is supposed to energise the patient and also I am meditating (although I'm not very good at it and need to work on it). In addition I am on a very strict diet of fruit and vegetable juices with many vitamin supplements. There is anecdotal evidence that some of these things may help, but again they are largely unproven.

Question: How do you keep positive and motivated, knowing that only a handful of people survive the type of tumour that you have?

Chris O'Brien: Fortunately, having a positive frame of mind comes naturally to me. Also, I think it's important that I work at staying positive for a couple of reasons: Firstly, there is evidence that a positive mental attitude can lead to an improved chance of survival. It's unclear why this is so, maybe it's because it strengthens the immune system in some way. The second reason I think is worthwhile is that it makes the whole journey so much easier and more tolerable for the family.

Question: What sort of treatment are you undergoing to treat the tumour?

Chris O'Brien: I am currently having chemotherapy, one drug given intravenously for the first three days of the month and two separate drugs given by tablet for the first 20 days of the month. That treatment will continue for six months depending upon how effective it is.

Question: What inspires you to keep going when I imagine at times it would be easy to give up?

Chris O'Brien: I have never considered giving up on alternatives. How would you give up? Just lie in bed all day? No way! One of the things is that I am actually really well. My energy level is much lower than it would be normally and I've lost a fair amount of weight, but otherwise I don't have any disability and my mind seems to still work okay. So overall my quality of life is brilliant.

Question: How did you come to be involved in the TV show RPA?

Chris O'Brien: I wasn't in the first series which is now 12 or 13 years ago, because I couldn't seem to come up with a suitable patient. Then in the second year a couple of really interesting and nice patients were willing to participate and the producers of the show seemed to find their stories interesting and the type of surgery I do interesting also. After that they tended to chase me a little to encourage me to identify patients with interesting problems, or interesting personalities — "good talent". As a consequence over the next 11 or 12 years I seem to have featured quite frequently on the show.

Question: What is your most memorable story from when you were on RPA?

Chris O'Brien: I think the most memorable was a woman named Dolores Stevens. Unfortunately she died after some period of time. She had an aggressive throat cancer and these days we would actually treat her differently to the way she was treated back then. I operated on her and removed her voice box and we then inserted a speaking valve to allow her to talk even though she didn't have a voice box.

Then she had radio therapy and she did well initially, but she got a severe narrowing of the throat because of the radio therapy. We had to do a second operation using a patch of skin from her forearm to widen her gullet (putting a gusset in it). It was very complicated as the skin needed a blood supply and involved micro-surgery.

That was successful and allowed her to swallow well and speak, but unfortunately the cancer spread to her liver, which is unusual for throat cancer, and she ultimately died.

She was a very sweet woman, incredibly courageous and trusting and she came from Dubbo and had a big fan club up there, and it's such a shame she didn't survive.

In fact there are many stories, there's a man called Paul Urbrien who is famous for growing gigantic pumpkins. He had a rare cancer involving one of his eye sockets and we had to remove his eyeball and then fill the socket with muscle from his tummy and then he had a special prosthesis made to cover the eye socket and that was attached to special glasses.

It looked great — you couldn't tell the difference from normal. That was around five to six years ago and he's still doing really well with no sign of cancer returning.

Question: My friend has just been diagnosed with a brain tumour. How can I best support her during this time?

Chris O'Brien: If you are the only support and potential carer, then you really face a big task. But as a friend, be around, be cheerful and hug your friend and tell her you love her.

See if you can provide assistance to the family doing practical things, and day-to-day necessities that a sick person can't cope with. Good friends can provide a lot of practical help. Offer to go with your friend to doctors appointments, drive the car and take care of other things so they can concentrate on getting better.

Question: When you were younger, did you always want to be a doctor?

Chris O'Brien: No I didn't, I wanted to be an architect until my last year at school. Half way through my Year 12 in 1969, I had a flash of insight. I was very idealistic and decided I could probably use what limited talent I had and make a contribution to humanity if I was a doctor rather than an architect.

Question: How did you get interested in cancer surgery specifically?

Chris O'Brien: I decided I wanted to be a head and neck surgeon because it was a very challenging field and very new techniques for reconstruction using microsurgery had developed in the late '70s and early '80s.

That particular speciality was poorly developed in Sydney so I thought it would be an ideal one to choose because of the challenge and the potential to take it forward. Not all head and neck surgery is cancer surgery as it involves treating benign lumps and tumours. But a lot of cancer surgery of the mouth, throat and saliva glands and advanced skin cancers including melanoma.

Question: Do you miss practising medicine?

Chris O'Brien: Surprisingly I haven't missed it for one minute. At the time I became ill I was doing so many things in addition to seeing patients and operating, I was running the Sydney Cancer Centre, I was the director of cancer services for an area of about 20 percent of the State's population.

I was running a head and neck research programme; I had two surgeons from overseas who had come to work with me and learn from me. In fact, even this year I had seven overseas speaking engagements planned. So my responsibilities over the last three to five years had become more and more, and my life was really unsustainable as it was so busy.

Also, there are so many other ways in which I wanted to develop intellectually that it was almost a blessing that this illness came along and gave me the opportunity to stop work.

Much of the time I've spent in active treatment trying to get better, so I really haven't missed work at all. But I do miss the contact with the young students, residents and fellows and I miss teaching them — but there may be time for that in the future.

Question: You seem to be very close to your family. How important has their strength and support been during your struggle with cancer?

Chris O'Brien: Very, very important. I have a gorgeous wife who has an incredibly generous heart and who is committed in doing all she can to get me well. The kids are very supportive but we've tried in every way not to disrupt their lives and activities. My son is doing the HSC this year and my daughter is about to go to Europe for about nine or 10 weeks and my eldest son has just started his career as a policeman, so the family stability has been important.

Question: I found your story inspirational and moving. What can we ordinary Australians do to help raise awareness of cancer?

Chris O'Brien: I think that's a really good question. First, look after your own health and don't take it for granted. Also the health of the people that you look after, spouse, partner, children etc. Next, go and get yourself screened, depending on your age and sex, have a mammogram, have moles checked, avoid the causes, smoking and sunshine.

The reason I say these things is that many cancers are preventable and if you do get cancer you need to get it diagnosed early so it's likely to be treatable and curable. Consider supporting cancer-related charities: The Sydney Cancer Centre Foundation: http://www.sydneycancer.com.au

Question: How far are we from finding a cure for cancer?

Chris O'Brien: We're finding cures all the time, but cancer is not one disease. What we understand now is that cancer is a family of chronic diseases, the main feature of it is uncontrolled cell growth.

Some cancers are very curable — many of the childhood leukaemias, melanoma and breast cancer, if caught in the early stages, have 80 to 90 percent cure rates. Some cancers, however, are biologically aggressive and that's one of the problems with my particular tumour. These are the ones that pose the real challenge. Lung cancer and ovarian cancer are also relatively aggressive.

Question: Has your outlook on life changed since being diagnosed with cancer? If yes, in what way?

Chris O'Brien: My outlook hasn't changed as I have a positive outlook, but I realise I need to enjoy every minute of every day and take every opportunity to treat people kindly and tell the people I care about that I love them.

Question: Chris, you know first-hand the devastation that cancer can have on a person's life and family: has your experience in saving lives giving you a different perspective in how to handle this twist of fate?

Chris O'Brien: I think the main thing it's given me is an insight into what my patients have experienced. Also, because this journey can be incredibly tough, I have developed a new appreciation for just how courageous people are, who have to go through this alone or with not much support. Or people who live in poor or deprived circumstances who just don't have the backup. For example I was driven in each day by my wife for treatment; whereas one of my patients was having treatment and had to catch two buses to get there.

Question: A very moving story; and it makes you ask "why?". What does the short term hold for you and is there one thing that you would like to do during this time?

Chris O'Brien: I'm confident the short term will be okay. I've said to all of my specialists that I would love for this year, 2007, to be stable for the family. It's possible I shall need further procedures although these are likely to be minor.

I think the chemotherapy will continue and we would only stop it if there was evidence it wasn't being beneficial.

That evidence would be if the tumour grew back and progressed while I was having treatment. I'll hopefully continue to get stronger, I'm walking a little more each day, doing some gentle weights. I'll continue to be stimulated — I'm reading books, which I love, trying to get better on the guitar. So there are so many things to do and I treat every day as a gift.

Question: Has your experience of this disease changed your views towards a need for true preventive health including alternative and complementary medicine? Do you consider it important for individuals to focus on a healthy, largely organic diet with quality supplementation of high-grade nutritional products?

Chris O'Brien: It hasn't really changed my view as I've always felt that prevention is better than cure and that we have never invested enough in the preventative sides of medicine. There is no doubt a healthy lifestyle, including diet and exercise, are of critical importance. Whether that means organic foods and supplements, although that's the approach I'm taking now.

Interviewer: Chris, unfortunately we are out of time tonight. Do you have any final comments for those who have joined us tonight?

Chris O'Brien: I would like to thank everyone for their interest and I hope you got something from the story. I also hope I'm around in a long time yet, so if you pass me in the street come and say hello.

Interviewer: This concludes our live chat with Professor Chris O'Brien, April 29 2007.