It was the scene that came to mind when one of the most surprising propositions of my life was put to me recently. At first the suggestion seemed laughable.
“Would you like to put your name to a scientific paper with me that will claim you never had cancer and that what you really recovered from so famously was widespread TB?”
Think about this. How would you respond if what you believed in deeply were to be questioned? Would you simply dismiss it? Would you investigate, or would you attack it? Maybe just stay silent and let it all blow over? Or observe who else may like to take up the argument?
This is the situation I found myself faced with back in March 2011 when Associate Prof. Ian Haines put the suggestion to me that I never had secondary cancer. I feel some explanation to my readers is warranted, and have submitted an edited version of this piece to The Age as an Opinion Piece.
Haines had approached me as a friend. He had spoken at a Gawler Foundation Conference, we had worked on other projects together; he had even been in charge of treating my father who had died of bowel cancer.
But then to confuse the matter further, the article was already written and the co-author was Prof. Ray Lowenthal, a long-term critic of my work. What to do?
In my experience, the mind is like a parachute; it works best when it is open. I have always had a deep commitment to seeking the truth and to responding to the best evidence available. There was no choice.
I checked with all my original doctors. All were confident all the necessary tests had been performed to confirm the clinical signs that the boney masses that appeared around my body were secondary cancer and not TB. A biopsy was not included in these tests as it was deemed unnecessary and to biopsy a bone cancer can necessitate a surgical procedure under general anaesthetic (as it did for my original diagnosis).
All my specialists confirmed I had both secondary cancer and TB. Two had expertise with TB. Dr. Alistair Robertson said
“I certainly do not think that it is at all likely that you just had TB”.
Dr. Jonathan Streeton said
“One gets calcification from TB, but nothing remotely of the appearances of your calcification”.
Furthermore, in 2004 my left lung was surgically removed due to damage caused by the TB and the cancer. The lung contained a large boney mass and the examining pathologist reported its histology was consistent with “osteosarcoma after chemotherapy”. There was no suggestion that this cancellous bone could be from TB, just cancer.
Another crucial point is that I did have a course of heavy chemotherapy after the secondaries were diagnosed. Such treatments are well known to severely depress immune function, thus making even minor infections potentially life-threatening. If I did actually only have widespread TB, not only would my oncologist Dr. Ivon Burns have been negligent, but the chemotherapy would have killed me.
So, for Haines and Lowenthal to contend “unequivocal evidence that the patient was cured of widespread metastases is lacking” insults the doctors who established my diagnosis. The article was not based on speaking with the treating physicians or examining the large number of X rays and pathology reports. In my view their theoretical speculation is scientifically sloppy and mischievous.
It attacks me personally and they clearly aim to imply that if my case history was invalid then my work is invalid. In my view this makes their article dangerous, as it could lead vulnerable and needy cancer patients away from self-help measures that could improve their quality of life and their chances of survival.
So, I said “no” to Haines and the Medical Journal of Australia refused to accept it without my permission. However, Haines and Lowenthal went ahead and published it (against my expressed wish) in the Internal Medicine Journal, which must have different standards.
And then came the front page of The Age and a few other newspapers. Last time I was on the front page of The Age was in 1981, 30 years ago when it announced my plan to start the first Melbourne Cancer Support Group.
What has changed since? A paradigm is a particular way of thinking about a subject. It is common to accept things that reinforce and to reject everything that conflicts with our point of view.
What would you do if you were a cancer specialist who had an experience that did not match your paradigm?
I know that for me one of the biggest obstacles I needed to overcome to recover was my Veterinary training and the belief that secondary osteogenic sarcoma, the bone cancer I had was uniformly and rapidly fatal.
But what if you were a busy oncologist and somebody did do just that; recover from advanced secondary bone cancer? Would you dismiss it? Would you investigate? Would you attack?
I have been attacked quite a deal over the past 30 years.
Of course I believe in good diagnosis. Of course I believe in appropriate medical treatment. Of course I believe that people can influence their own wellbeing and the course of their disease.
What I recommend is best described as Lifestyle Medicine. It is to do with what you eat and drink, your exercise and emotional health, the power of your mind and techniques like meditation. This is not “alternative” medicine. It is good medicine. It is safe medicine.
There is a need to make it clear my life is not work. My work started with my life and my recovery, but 30 years later that work has evolved in response to new experiences and research and now stands in its own right.
Happily my life is fully congruent with what I teach. Anything I recommend I either did or more likely, continue to do. I have never heard of an oncologist trying a course of their own chemotherapy to find out what it is really like. That would be absurd, but to claim that what I do is dangerous or risks taking people away from effective treatments is equally absurd.
No one I know of ever died from eating well or meditating too much. However, are we allowed to say that people do sometimes suffer inordinately and die from chemotherapy and its complications?
There needs to be a realistic and balanced perspective and patients need to be helped to make well informed decisions.
My understanding of science is that it advances by observing unusual events and investigating them. Thirty years later I have observed many people recovering from cancer against difficult odds.
Around 20 years ago on ABC TVs Couchman show Lowenthal challenged me to present my 50 best cases for evaluation. I readily agreed but he subsequently claimed that he was unable to gain funding for the research. My feeling is that project would have been a much better use of energy. Maybe it is time for a cooperative investigation and a real sense of everyone working together.
If you feel motivated, letters to the Editor of The Age or The Sydney Morning Herald would still be useful.
Or add a comment below.
Happy New Year. May 2012 be a year of peace, good health and deep seated happiness.
Link to The Age article
to Monty Python and the Spanish Inquisition
My biography which documents my case: The Dragon's Blessing by Guy Allenby
You Can Conquer Cancer which documents my cancer work
The Gawler Cancer Program: the CD that presents the paradigm I work with
Mindbody Mastery: online meditation program