THE PATIENT RESEARCH TRAP - (under construction)

Cancer patients need access to accurate information in order to make informed treatment decisions.

Yet for most that truth is highly elusive despite their well intentioned research efforts.

On this page Grace discusses ways to avoid the research traps. 

The truth remains elusive for cancer patients seeking to be well informed

Cancer patients are commonly misinformed when researching the best ways to assist their cancer recovery. Why?

The Discrepancy Gap: The information distributed by hospitals and doctors, as well as the compelling claims made by alternative medicine proponents, rarely correlates with the lived experiences of our patients at the cancer coalface.

The Human Cost: In our work we frequently witness how the ‘Discrepancy/Correlation Gap’ causes harm or results in death to well-meaning patients.

Sadly; patients do not know about this discrepancy until they experience it for themselves. 

Without insider information about what patients really experience at the cancer coalface, a researching patient has no way of discerning the accuracy of the material they are reading.

An informative article from Forbes states – “Most of us, even those of us who are scientists ourselves, lack the relevant scientific expertise needed to adequately evaluate that research on our own.”
“We need to be humble, and admit that we lack the necessary expertise to evaluate the science before us.”

The Forbes article is accurate regarding patients trying to research their cancer. However; there is another layer not discussed in the article. From our experience, the authors of research papers and the authors of hospital brochures and PR, are usually far removed from the experiences of patients at the cancer coalface.

Grace Gawler knows what patients really experience at the cancer coalface

An independent Cancer Navigator, like Grace Gawler, with 46 years coalface experience, who has guided 20,000 patients through their treatments, (over the long term) is ideally positioned to present an accurate picture of what patients really experience.

This applies not only to medical treatments but to cancer diets and supplementation.

Without this accurate picture patients cannot make informed treatment decisions.

As an independent patient advocate, Grace collaborates, on behalf of her patients, with some of the best cancer doctors and clinics in the world. With this global benchmark of excellence as a guide, Grace she is free to recommend the best treatment for patients. She is not limited by protocols dictated by the hospitals, big pharmaceutical companies or the medical system. 

The addition of genomic diagnostics enables treatments to be personalised in accordance with patient’s unique genetic blueprint. The application of Genomic science means no more guesswork.

True stories that illustrate the credibility gap

Example 1. Radiation Therapy Taboo:

It has been taboo to speak of the serious and often life-altering side effects caused by radiation therapy. The damage experienced by many of our patients is not easily found in the medical literature. Even a patient’s treating radiation doctor will not be involved, especially if side effects are delayed. In fact they may never be informed. Other specialist doctors have to deal with the damage.

Damage may be especially severe when radiation treatment has a short term goal in mind. IE: when doctors don’t see them as long-term survivors. read more.

Example 2. Alternative Medicine Claims:

The compelling claims from alternative cancer proponents are worlds apart from what real patients experience at the cancer coalface. In her 46 years of cancer service, Grace, who trained extensively in botanical sciences, has never witnessed one single success from an alternative medicine regimes.

When investigated, most claims from cancer entrepreneurs cannot be verified medically. Most patient research leads to one size fits all products or therapies. This non-scientific approach is inferior to modern genomic tests that can identify a patient’s ability to metabolise medical drugs, complementary medicines and supplements.

Who advises the health ministers?

We had a chance meeting with the leading medical research adviser to the health minister in Queensland. When he heard what our patients commonly experience at the cancer coalface he was flabbergasted. He admitted he had no idea that such large numbers of patients really experienced. His research was compiled from studying medical papers and research and was totally disconnected from the coalface of cancer. 

Serious health hazards -shocking scale of TCM adulteration revealed by researchers: Source 
More than 1,200 adulterants have been found in proprietary Chinese medicines (pCMs), which are the finished dose form of supposedly all-natural Traditional Chinese Medicines.

The new analysis, published in the British Journal of Clinical Pharmacology, documents 404 cases involving the use of 487 adulterated pCMs or health products, containing a total of 1,234 adulterants.

The adulterants consisted of approved drugs, banned drugs, drug analogues, and animal thyroid tissue.

Adverse effects
Psychosis, iatrogenic cushing syndrome, and hypoglycaemia were the three most frequently encountered adverse effects.

A Google search for Traditional Chinese Medicine adulterants reveals 1.3 mil results. There are 1000s of credible papers reporting on the problem – YET cancer patients flock to TCM with few realising the harm they may be doing to themselves.

South Australia Study – TCM- Adulterants and Contaminants

When the big pharmaceutical companies announce a new cancer treatment breakthrough, the promotion brochures flow out to the hospitals and doctors. Almost always in the positive. It takes a long time before the feedback from what real patients experience at the real cancer coalface is converted into meaningful research. 

Such was the case with the new drug-based immunotherapies. Most of the patients in our care, who used these treatments, (against our advice) either died (quite quickly) or suffered severe side-effects. Currently, these drug-based immunotherapies are receiving much positive media attention in Australia & New Zealand.

However, in the USA, in more recent times, medical papers are ‘popping up’ warning about some very nasty side-effects of drug based immunotherapies.

Mary is diagnosed with pancreatic cancer. Her local hospitals can offer brutal treatments with little guarantee of survival. She and her family begin ‘researching.’ They find a well known hospital named after a famous actor. It claims to offer ‘complementary’ therapies along with state of the art conventional treatments. The hospital has a very effective PR program. From reading about it many patients decide its the way to go. In reality, most patients we know who received treatments there are disappointed. 

Example 3.  The Gap between the medical literature, the hospital brochures and the reality for our patients who have experienced the ‘new’ Immunotherapies:

Read More 1.

Read More 2. 

The convincing video from the US Cancer Research Institute demonstrates what patients are up against. 

A quick Google search for immunotherapy gives almost 19 million results. Overwhelmingly, the video, the articles promote the upside of immunotherapy and downplay both the limitations and side effects.

To find articles which accurately portray the limitations of immunotherapy and the harsh, sometimes life-threatening side effects, patient researches have to frame their searches in the negative. This is something they are unlikely to do.

Disclaimer: GGI does not seek to discredit cancer doctors, hospitals or our medical system in general. Rather we wish on this page to discuss often unreported or under-reported side effects and other issues patients commonly deal with as a result of their treatments. Working as advocates and navigators with our large cohort of 20,000 patients over 4.6 decades provides the basis for this page.

The goal is patient empowerment. Helping patients to be educated and well informed in order to make wise treatment choices and to seek second opinions when necessary.