Ian Gawler Blog: Twenty years and what has changed?

What if you were to read something, thought it to be from current time, and then found out it was 20 years old? I have to confess with being a little down-hearted with the place of the “patient” in current cancer management. And the slow pace of progress.

I had occasion to re-read a piece I wrote for the Australian Doctor (the main newsletter of GPs in Australia) 20 years ago - in 1993. As far as I can tell, there is only one significantly different detail after all these years. See if you can spot it!

But first

Thought for the Day
“Science progresses not because scientists change their minds,
but rather because scientists attached to erroneous views die,
and are replaced”
                                Dr. Otto Warburg, Nobel Prize winner in medicine in 1931,
                                    quoting from Dr. Max Planck, originator of quantum theory, 1858~1947

Cancer patients find strength in self-help approach. Ian Gawler

Quoted from the Australian Doctor, 3rd September, 1993.

How can doctors best help people affected by cancer? How much can cancer patients do to help themselves? What should they avoid and what reasonable options are open to them? What should you recommend?

If a new anti-cancer drug was shown to double the lifespan of women with advanced breast cancer, would it be negligent not to recommend it?

The Lancet in 1989 reported Spiegel’s (1) well designed, widely acclaimed study that proved that attending a support group once a week for a year doubled such women’s survival time, so how can it be ignored?

People affected by cancer can be helped to learn how to become long-term survivors. Many are missing out on this opportunity.

As a veterinarian and a recovered cancer patient I have spent the past 12 years conducting cancer support groups. During this time more than 10,000 people have attended the weekly and residential programs that my wife Grace and I founded and continue to develop at the Gawler Foundation in rural Victoria.

We never say we can cure cancer. Our self-help program’s stated intention has been to help cancer affected people improve their quality of life and contribute wherever possible to their own survival. People learn to live well and to die well.

The self-help approach augments conventional therapies and, at the very least, plays a vital role in meeting the human needs of patients.

There is a widespread feeling that doctors need to attend better to the psychological and spiritual needs of their patients(2). We have a system that has been doing this effectively for more than 12 years and happily share it.

When we began our work in 1981, this whole area was unexplored. Now support groups are coming into most cancer hospitals and patients are seeking the self-help options.

Our approach is to encourage cooperation and communication between doctors and patients. Best results are obtained when doctors work with patients and their families in partnership.

The patient has the right to remain at the head of this partnership. They also have the right to give away this authority away if they choose. A doctor does not have the right to assume this authority without the patient’s conscious permission.

Similarly, people affected by cancer have the right to informed debate and choice. We do not recommend unproved remedies. We are convinced the community is best served by reasoned debate.

Many patients feel that elements of the medical profession – more often specialists than GPs – are inordinately biased against innovative or alternative therapies.

The furious and often emotional debate over vitamin C is a great example. While many patients report its benefits, the debate rages(3) .

The Foundation’s aim is to provide information that is available in a balanced way, encouraging individuals to take responsibility for their own decisions.

The crucial question is: why do some patients recover when others with the same illness do not? I am confident that this is more than just good luck. It is what I am most interested in studying and what new patients are interested to learn about.

We can learn from successful patients, just as we would learn from successful sporting or business people.

My own history, which is often misquoted, offers an example of the complex history of a long-term survivor.

In 1975, as a young veterinarian, and athlete, aged 24, I had my right leg amputated because of osteogenic sarcoma.

Later that year, inoperable secondaries were confirmed in the right inguinal and mediastinal lymph nodes. In those days, I was told available chemotherapies were of no value and radiotherapy would be palliative at best. The prognosis of 3-6 months was considered reasonable.

I turned to diet and meditation.

Importantly, my wife fully supported my view that cancer could involve a failure of my body’s immune system. If we could find a way to re-activate it perhaps I could recover.
We initially followed the Gerson diet(4) . This was exceedingly rigorous and created many problems.

These days, we advise against using the Gerson diet as it is far too demanding in a home setting. However, I do believe it has enough merit to warrant serious study.

I feel sure that nutritional factors helped me a great deal. Many patients report the positive benefits associated with changing their diet.

There is a good body of evidence to indicate that nutrition can alter the outcome of cancer. Numerous animal studies confirm the proposition, but studies in humans have been more limited.

I also began meditation with Dr Ainslie Meares. Dr Meares believed that prolonged meditation could reduce cortisol levels, improve immune function and so lead to recovery(5).

For that first 3 months my tumours remained static. Then severe sciatic pain forced me to try acupuncture (2 treatments only), then palliative radiotherapy, (3 treatments to my lower lumbar region only). The pain continued to be severe but was then relieved by injections of a mistletoe extract administered by a GP interested in natural therapies.

By March 1976, I was suffering severe weight loss (though 1.8m I weighed 54 kg), jaundice, night sweats and hydronephrosis of the right kidney (on IVP). The pain was again severe.
At this point my surgeon considered my prognosis to be a couple of weeks.

My wife and I then left for 4 weeks with faith healers in the Philippines. This was a truly extraordinary experience which challenged all my preconceptions and experience of surgery.

Importantly I came home 6 kg heavier, with no pain and feeling “I had turned the corner”.
In the next 6 months, while my general health improved, the cancer itself continued to spread and grow. I maintained the modified diet and meditation while my wife did many hours of massage for me. We also investigated many natural therapies.

By late 1976 I had massive secondaries on my sternum, my left lung, lumbar spine, mediastinal and inguinal lymph nodes. Remarkably, I was free of pain and otherwise unaffected by this widespread cancer. However, I reconsidered the medical options.

I was offered experimental chemotherapy based on “Adriamycin”, Vincristine and methotrexate.

I completed the first round of this protocol in 2 and a half months but there was little change in my tumour sizes. I then elected to cease treatment despite warnings of a rapid rebound.

We returned to the Philippines for 3 months, travelling then to India. In May 1977, the holy man Sai Baba told me: “ You are already cured, don’t worry”.

This was another major turning point, as it helped me to dispel doubts and be fully confident of recover.

I had no more medical treatment but continued, fully committed, to the self-help regimen as described.

By June 1978 all visible lesions had subsided. Tests in Adelaide confirmed that there was no evidence of active cancer, but I did have TB.

I responded rapidly to standard TB treatment, and my case was reported by Meares(6).

Grace and I moved to Yarra Junction, Victoria in 1980. We have had 4 children since chemotherapy.

Obviously this is a complex history. I am often asked what cured me, and I reply that it was a combined result.

I have no doubt that the medical treatment on its own would have been unsuccessful. My recovery demanded a great deal of effort from both myself and my wife.

In 1981, my wife and I began an innovative cancer support-group based on our experiences. At that time little was being offered to people affected by cancer who wanted to help themselves. Patients were being left to fend for themselves. Hope was often denied and the myth of cancer as a death sentence prevailed.

We were keen to redress these painful problems and felt we had something important to offer. The main ingredients of our approach were (and still are) good nutrition, developing a positive state of mind, meditation, and mutual support.
Our patient-based programs gained wide interest.

In 1983 we founded the non-profit non-denominational charitable organization The Gawler Foundation to extend this work and left our veterinary practice.

 In 1984 I detailed our approach in You Can Conquer Cancer(7).  The book was launched by Sir Edward “Weary” Dunlop who remained a strong supporter of our work.

In the same year, being keen on scientific evaluation, I unsuccessfully approached the Peter McCallum Cancer Institute in Melbourne and the Victorian Anti-Cancer Council for help with research. Like many self-help groups, our resources were limited and we could get no outside assistance at that time.

In 1987, we began developing our own extensive in house database with a view to follow-up research, In the same year I was awarded the Order of Australia Medal for services to the community and published a detailed account of our meditation and positive thinking methods in Peace of Mind(8).

In 1988 on the ABC Couchman across Australia, Professor Ray Lowenthal challenged us to present our fifty best cases for assessment. We readily agreed, but the proposal lapsed when Professor Lowenthal was unable to secure funding for the research from The Australian Cancer Foundation.

We are now cooperating on research projects with Monash and Deakin Universities, have helped fund a major study with the Royal Melbourne Institute of Technology and continue with our own in-house research projects.

We welcome medical visitors to our programs and many have attended as patients, partners or observers. These people see what can be accomplished.

Remarkable transformations occur when people attend an active cancer support group. We focus first on living well and peace of mind. The hope, energy and vitality in our groups is truly amazing and quite inspiring.

People learn to communicate, to balance their lives, to clarify their goals and to work effectively towards them.

We use strategies in our programs to help people avoid guilt and find the peace of mind that is the focus of our work.

Many doctors, often unintentionally, place potentially damaging pressures on patients and, importantly, on their partners and families. We experience this often when people complain that their self-help efforts receive no support from their doctors or, worse, are attacked by them. They feel misunderstood, unsupported and alienated.

If doctors are noticing negative feelings being directed towards them by their patients, it is often because they do not listen. They would do well to sit and take an interest in them as people.

This is another key ingredient to a successful support system. We provide the time to speak and to be listened to.

Spiegel’s study shows meditation and a positive attitude help patients cope with the consequences of their disease. Doubling the lifespan by attending a support group is a powerful effect.

A good summary of the mass of literature on this subject is in The Psyche and Cancer(9).

After a 10 year study of women with breast cancer, Pettingale (10) found survival was best predicted by the patient’s attitude.

After a 7 year study, Levy(11)  found cancer survival time was best predicted by the expression of joy at baseline testing.

On the basis of psychological interviews before biopsy, Wirshing(12)  was able to predict accurately when women’s breast lumps would be proved to be benign or malignant.

Ramirez(13)  found life-threatening events were significantly associated with recurrences of breast cancers.

Another excellent series of review articles is contained in the report “Can psychological therapy improve the quality of life of patients with cancer?”(14)

In another controlled prospective study, Fawzy(15)  reported on 6 weeks of structured group intervention for patients with malignant melanoma. Distress decreased, coping increased, and, significantly 6 months later, immune function was measurably enhanced.

Professor Lowenthal says that in my book You Can Conquer Cancer I do not provide evidence for the claim that cancer patients have a typical psychological profile and are unable to cope with stress appropriately. But the cancer personality is widely recognised by many patients and scientists. (16, 17)  It certainly warrants further major study.

Professor Lowenthal says that “ taken overall science has made only a modest impact on the problem of cancer…Even where effective treatments can be offered, to many patients the potential side-effects of surgery, radiotherapy, and chemotherapy are perceived as unacceptable relative to their possible benefits.” He says doctors should “offer cure in some cases, comfort in all”.

Clearly patients being recommended orthodox treatments need more psychological support to cope with both the disease and the treatment.

The argument would seem to be about how to provide comfort effectively. There is a need to investigate new areas and techniques for solutions to cancer.

Hope is the starting point and it needs to be backed by effective techniques.

A normal progression in science is for observation to precede evidence. Having recovered personally from such a critical condition, having observed our techniques transform the lives of so many others and being aware of the bulk of recent supportive, scientific evidence, my wife and I know that our self-help approach has a lot to offer.

Many doctors do encourage their patients to include self-help techniques as part of their healing equation. We believe good doctors always have done so, and hope more doctors will have the confidence to support patients and families effectively in these self-help efforts.

References

1. Spiegel et al, The Lancet, 1989, ii:888-91.
2. Lowenthal R M, The Medical Journal of Australia, 1989, 151:710-15.
3. Pauling & Moerte. Special Report, Nutrition Reviews, 1986, 44:1, 28-31
4. Gerson, M. A Cancer Therapy – results of 50 cases, The Gerson Institute, Bonita, 1958.
5. Meares, A. The Medical Journal of Australia, 1983, June, 583-84.
6. Meares, A. The Medical Journal of Australia, 1978, 2:433.
7. Gawler, I. You Can Conquer Cancer, Hill of Content, Melbourne, 1984.
8. Gawler, I. Peace of Mind, Hill of Content, Melbourne, 1987.
9. Kune, GA and Bannerman, S. The Psyche and Cancer, University of Melbourne, 1992.
10. Pettingale et al. The Lancet, 1985, 1:750-751.
11. Levy et al. Psychosomatic Medicine, 1988, 50:520-28.
12. Wirshing et al. Journal of Psychosomatic Research, 1982, 26:1-10.
13. Ramirez et al. British Medical Journal, 1989, 291-293.
14. Greer, S. British Medical Journal, 1989, 59:149-51.
15. Fawzy et al. Archives of General Psychiatry, 1990, 47:729-35.
16. Bagenal et al. The Lancet, 1990, 336:606-10.
17. Bagenal et al. The Lancet, 1990, 336:1186-88.


Lovingly typed by my wife Ruth Gawler.

So there it is. After 20 years one thing has changed but not much else. Maybe there is more research to quote. Maybe the community is keen for a more Integrated approach to the management of cancer. Maybe there are more groups, more centres offering some form of self-help program; but I suggest I could have submitted this same article to the Australian Doctor last week and they would have taken it to be reasonably fresh. What do you think? Any comments?

So in the next few weeks I plan a series of posts to examine what is going on in oncology, and what is the place of the patient in the management of cancer. Next week, Surviving Cancer - a tribute to the long term survivors and a feature to mark the inspiring event coming to melbourne on March 5th - see below.

RELATED BLOGS
Recovery from cancer is possible

RESOURCES
You Can Conquer Cancer. Fully revised/re-written edition now in the bookshops or available on-line from the Gawler Foundation.

NEWS

1. Surviving Cancer
Hear, learn and be inspired as four remarkable cancer survivors share their stories and insights

Date: Tuesday 5th March. Light supper and book signing from 6.30pm; 7 – 8.30pm

Venue: St Michaels on Collins, 120 Collins St, Melbourne

Cost: $20, with concession for Health care cards and students $15

Enquiries: St Michaels: 03 96545120

Bookings: Not necessary; pay at the door on the night

All proceeds from the evening will support the work of The Gawler Foundation.

To download the flier, click here

2. Meditation in the Forest: Yarra Junction; March 22nd - 28th, 2013
Ready to join Ruth and myself, take some time out and experience deep natural peace - amidst the majestic forests of the Upper Yarra Valley.

This retreat will take you deep into the essence of meditation - the direct experience. As well as being restful and regenerative, in this retreat I will be introducing and guiding a structured series of breathing exercises that enhance concentration, deepen meditation and facilitate healing and wellbeing. There are only a couple of places left.

For details and to book, click here