February 6, 2019

Patient Advocate in Focus - Eileen O'Sullivan

In 2013 Eileen O’Sullivan was diagnosed with triple negative breast cancer. Now living cancer-free, here the Dublin woman tells her story of the dangers of misinformation she experienced while undergoing treatment:

As most cancer patients can attest to, a cancer diagnosis brings up a maelstrom of emotions; fear, panic, anxiety, denial, lack of control, uncertainty, guilt, shame, anger, hopelessness, desperation, isolation and many more. The dominant emotion in my case was ‘lack of control’, and feeling like I was passing over control of my life to my clinical team. At every meeting and at other times when I had questions (by telephone) my team engaged and explained the plan of action but that didn’t fully alleviate the strong emotions of powerlessness as I am never comfortable with not having autonomy.

As I had a number of close relatives diagnosed with cancer prior to me, I was fairly aware of the treatment process and all it entailed. However, what really took me by surprise was the very obvious commercial target that I became now that I was a ‘cancer patient’. I would hazard a guess that most patients ’google’ their diagnosis and how they might support themselves throughout their treatment. When I went online I was checking what research was ongoing in the TNBC space. However, following some online searches, my email and social media timelines were bombarded with so many suggestions of unproven alternative treatments and so-called ‘cures’ that beggared belief. Clicking on any of the links or adverts sent me down a rabbit hole of pseudoscience. I learned that triple negative breast cancer was ‘apparently ‘caused by root canals, not being breast fed and having a negative aura! Other websites stated that cancer was a fungus and could be ‘cured’ by bicarbonate of soda. With the online age, cancer has become big business, and there are many people taking advantage of this through targeting vulnerable patients with misleading and false statements about ‘cures’ that don’t work, and in fact often do more harm than good. By using terms such as ‘Functional Medicine’ and ‘Integrative Oncology’ backed up with a facade of ‘evidence’ and ‘research’ comprised of cherry-picked research often taken out of context or disproven, they can very easily appear legitimate. They also often use patient ‘Testimonials’, but we have no way of knowing if they are true or completely made up. (I have seen charlatans and quacks leaving patient testimonials for their clinics on their websites long after patient deaths, and when the treatments don’t work, telling patients that it was their fault for not following protocols or not having enough belief and positive attitude.)

Some common false emotional targeting:

  • ‘It’s not your fault you have cancer’ (e.g. it’s the carbs/sugar feeding cancer, nutritional guidelines, fluoride, GMOs, ‘toxins’, chemtrails, BPAs, dairy, meat, big pharma hiding the cure etc) This is an incredibly powerful tactic, creating a villain, tapping into emotions of blame, anger, feelings of unfairness and gives an opening to offer so called ‘solutions’, which may appear less daunting

  • ‘All you have been told about cancer is wrong’

  • ‘The answer to cancer is in nature’

  • ‘More people are being diagnosed with cancer and dying from it. It is a modern disease’.

  • ‘Chemotherapy doesn’t work. People don’t die of cancer, they die from the effects of treatment’

  • ‘Chemotherapy causes cancer to spread’

  • ‘Treat the root cause, not the disease’. The root cause is whatever the business thinks it is, with his/her offer of a solution.

  • ‘Conventional treatment is just SLASH, POISON AND BURN’. This is deeply upsetting and cruel for mastectomy patients or those patients with other post treatment disfigurements e.g. skin cancer

  • ‘Why would any woman allow herself to be mutilated by having a mastectomy, she is no longer a woman’. I was personally on the receiving end of this one, by chance, the day before my mastectomy surgery

  • ‘Cancer is big business – Big Pharma, Big Food and oncologists/cancer experts are in the pay of Big Pharma’

  • ‘If you have cancer, why wouldn’t you throw everything at it?’ This is another common trope, which on the surface seems reasonable, regularly suggesting X as an adjunct to conventional therapy. But often X actually does a lot more harm, and can stop the conventional treatment from working as best it could. Take diets which cut out important nutrients for example.

  • ‘You have stage 4 cancer and are only being offered palliative treatment, what have you got to lose by trying X’.

Patients have a lot to deal with when going through cancer treatment or living with cancer. Many of us want to take back a sense of control or grab onto some element of perceived certainty. We can feel that we should be doing everything possible to get ourselves through cancer, sometimes erroneously wondering - did something we did or didn’t do contribute to our cancer? Fear of death is one hugely motivating emotion. It can be difficult to accept that we have to just let the conventional treatment ‘do its thing’, and we may have a lesser personal contribution to make.

As cancer survivors, we can do our part to encourage others going through treatment to shun the online ads and listen to their medical teams. Through our own experiences, we can reach through to cancer patients in a way others can’t our own stories about false ‘cures’ can be hugely effective because they’re relatable.

There have been huge advances in our knowledge and treatments for cancer and overall care for patients, and hopefully more to come, but it is concerning and disheartening to witness the extent of dangerous misinformation that permeates into the cancer patients’ environment from a wide range of sources. This potentially risks negatively affecting cancer patients’ outcomes. Sadly, patients cannot always receive the news they want to hear from their clinicians, and there will always be patients who are so desperate and frightened that they will opt for any hope or promises of other non evidenced based treatments, no matter how supported and informed they are by their EBM care team. Also, there are patients who have always had more of a leaning toward so called natural or alternative health care than evidenced based medicine. But I do believe that the cancer community of professionals, patient advocates and cancer support organisations can make a tangible positive difference in protecting patients against the potential harms of such misinformation, by firstly acknowledging the extent of the problem and working collegiately and purposefully together to take appropriate action.