Become an empowered patient researcher (page under construction)
Cancer patients require accurate information in order to make informed treatment decisions.
Yet for most patients, despite their enthusiasm to research their condition, that accuracy usually remains quite illusive.
On this page Grace discusses why accurate information can be illusive. She shows how patients can be empowered to discern when information is credible.
Cancer patients need to be well informed but how can they discern the credibility of the material they find?
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 patients at the cancer coalface. (our cohort = 20,000 patients over 46 years)
The Human Cost: In our cohort we frequently witness that the ‘Discrepancy Gap’ causes harm, even death to well-meaning patients.
Sadly; patients do not learn about this discrepancy until they experience it for themselves.
Without knowing about what patients experience at the cancer coalface, a researching patient cannot discern the accuracy of their research.
An appropriate 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 article describes our patients who try to research their cancer. However; it leaves something out. From our 46 year’s experience, we know that the authors of research papers and hospital brochures, are usually far removed from the experiences of patients at the cancer coalface.
Disclaimer: We (GGI) do not seek to discredit cancer doctors, hospitals or our medical system. We work closely with them on behalf of our patients. However; as an independent organisation we are free to explore unreported or under-reported side effects and other issues that patients commonly deal with, as a result of their treatments. Our work as advocates and navigators with a large cohort of 20,000 patients over 4.6 decades provides the basis for our evidence.
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.
Grace Gawler has experienced what patients go through at the cancer coalface
Independent Cancer Navigator, Grace Gawler, with 46 years coalface experience, has guided 20,000 patients through their treatments, (over the long term). Grace 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.
When cancer doctors deny that your side effects have resulted from their treatments
True Avastin Story: A patient on Avastin was experiencing severe joint pains which were worsening. The oncologist said it couldn’t be the Avastin she prescribed because she has never had any patients complain before. The patient finds there is nowhere to go. Feeling unheard and unsupported, he/she begins to think there must be something wrong with them.
Working with thousands of patients over 4 ½ decades, Grace Gawler has seen it not uncommon for patients to experience similar side-effects from Avastin.
We are not normally supporters of online cancer forums, however, a quick search revealed large numbers of patients describing similar scary side-effects. Many state they are relieved to find others having similar experiences because the doctors and the medical literature rarely describes what they are experiencing. Like our patient above, they all thought there was something wrong with them.
Vacuum True Story – A Metaphor:
If the enormity of the Avastin story is hard to swallow; consider the true story below.
I had purchased a new vacuum cleaner. It was great at first but soon a range of problems surfaced. I went back to the shop where I purchased the machine and they told me I was the first to complain about this model and as far as they were concerned it was top of the range.
I started to doubt myself so I went online and in a short time found dozens of other customers who were experiencing exactly the same problems that I had. My story illustrates how you might feel when somebody who sells you a product (or service) refuses to believe there is anything at fault. Of course this is crazy making for the customer but is insignificant compared to a cancer patient who is wracked with pain and a doctor won’t listen.
More Stories that illustrate the Credibility Gap
Example 1. Radiation Therapy. The Taboo on discussing Side Effects:
It has long been taboo to speak of serious (life-altering) side effects that can be caused by radiation therapy. The damage experienced by some of our patients is not easily found in the medical literature.
Often a patient’s treating radiation doctor will not be involved, especially if side effects are delayed. 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.
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.
Example 3. Health hazard. Shocking 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.
Example 4. Who advises the government health ministers?
Over the decades we’ve observed (from meeting) that health ministers do not have knowledge of what patients actually experience at the cancer coalface; they are far removed from the ‘action.’
The ministers in turn are informed by advisers, highly qualified medical ‘scholars’ who compile volumes of ‘information’ gleaned from medical and research papers. They have teams of understudies who assist with the large volume of research reading.
Worryingly for cancer patients, the health minister makes major decisions based on this information. The minister his entire team have no idea of the ‘Discrepancy Gap’ between their world and the cancer coalface where real patients have experiences that differ widely to the ‘literature.’
5. Immunotherapy and Serious Side Effects:
When pharmaceutical companies announce a new cancer treatment breakthrough, the brochures flow out to the hospitals. It can be many years before the experiences of patients at the cancer coalface appears in the literature.
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 (some quite quickly) or suffered severe side-effects. Yet, these drug-based immunotherapies are receiving positive media attention in Australia & New Zealand.
However, more recently, in the USA, medical papers are ‘popping up’ warning about some very nasty side-effects of drug based immunotherapies.
6. When Fame lends their Name: A Story…
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 since the actor is well known and much loved. The promotions convince many patients to enrol there for treatment.
In reality, all the patients we know who received treatments there are very disappointed. It was far below their expectations and the treatments could have been received anywhere.
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.