May 7, 2015

Fear and alternative medicine

Soon after my cancer diagnosis I told my surgeon that I was uncomfortable about the upcoming surgery and did not want him to remove all my contaminated organs.
 
In a small, crowded clinical room I pleaded: “Can’t you just take the colon, or rectum and leave my bladder and reproductive organs alone? Can’t I just delay the surgery for now and spend the next six months working out, eating healthy, and meditating?”

I was diagnosed with stage three bowel cancer in 2011 at the age of 28. At the time I was terrified. I was facing chemo, radiation, and major surgery that could have left me, if I survived, with permanent bags hanging off my body and erectile dysfunction.

And so I launched head first into exploring other therapies. They gave me a sense of power over my body – like I could have an effect on the outcome of my cancer, and it wasn't in the hands of others alone.

My doctors didn't agree. At the meeting they warned me, unequivocally, that they don’t usually see people who have tried alternative methods – as promoted by the now disgraced Belle Gibson – “until they are crippled by pain and it’s too late to save them”.
 
With the recent passing of alternative therapy ‘Warrior’ Jessica Ainscough after a 7 year-long battle with epithelioid sarcoma, a rare cancer affecting the hands and arms, and the collapse of Gibson’s fake cancer healing empire, alternative medicines have been pushed into the public eye.

Exactly how many people turn down conventional treatments for alternative ones is unknown because hospitals don’t measure it. Hard data is also lacking because studies tend to group complementary and alternative therapies together – even though they represent very different attitudes towards mainstream medicine.

Most people believe that alternative therapies are safe, despite the fact that they aren’t subjected to rigorous analysis. The risks of alternative medicines are rarely communicated by those selling them, especially the biggest risk of all – missing that small window of opportunity to hit a cancer with the best treatment possible, usually aggressive chemo, radiation or surgery.

Wellness therapies don't work alone. But maybe we should also preach some patience and understanding to those who turn to them so we can support them to make decisions that ensure the best chance of surviving. I am a scientist yet – four years ago, faced with a life-threatening illness – I suddenly considered abandoning science. Why?

Quite simply, I was very scared.

In the end I followed my doctor’s treatment plan – but I also kept meditating, drinking apple cider vinegar, went vegan, and began to see complementary healers. Faced with fear and frustration, these more gentle treatments seemed a universe away from the sickness and pain of chemo and surgery. They gave me hope.
 
Why were people so duped by Belle Gibson’s lie? Why was Jessica Ainscough (who I met at a cancer meeting and was lovely) seen as so brave and all knowing? Both are a reminder that people are complicated, emotional creatures, especially in times of stress and fear. They want a bit of magic and a few miracles.

I started my training this year to be a doctor. And one of the most important lessons we learn as doctors is that people need to be emotionally propped up through major medical decisions. Support during the decision-making process, when dread and anxiety are elevated, is fundamental.

Gibson and Ainscough sold therapies that aren’t proven – but remember people believed in them because they were afraid. I know because I've been there and danced with the dangerous idea of abandoning medicine, at a time when I needed it most.