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.


  1. Love this so much Ben! There is most definitely room for both, but both worlds need to be more openly collaborative and supportive of each other. There is a lot more work to be done to bridge the gap. I hope your training is going well!

    1. Thanks Jade. Totally agree about the collaboration. And as a start, hospitals could start to record what patients get up to outside the hospital. Easy, just insert a tick and flick form amongst the 200 other ones we fill out regularly ;)

  2. Hi Ben; very interesting… I’m just not clear from your article as to how extensive your surgery ended up being?

    I'm really not sure how much detail to put here. Despite 3 negative PAP test results in the 18 months prior, in November 2008 I was diagnosed with advanced cervical cancer (tumour was 10 cm across and beginning to invade the vaginal wall and crowd out other organs). Like my Aunt, I was among the one-in-five cases where the cancer has not begun on the outside of the cervix, and some 50% of these are not picked up by the PAP test.

    Like you, I ended up using a combination of conventional and alternative therapies for treatment. The first round of radiotherapy I also had chemo which was suspended before competition of the course, as my radio-oncologist decided it was not worth how badly it was affecting me. I then underwent brachytherapy, which required a hospital stay and is a rather worse experience than described in the literature. The second round of treatment (to treat secondaries – “seeds” over my pancreas) he applied radiotherapy only. My treatments were successful, and I have now been officially clear of cancer for five years.

    Throughout treatment, as best I was able; I was also employing various alternative therapies including diet, exercise, Iscador (Weleda mistletoe extract) and various mediative practices to reduce stress and enhance my body’s ability to heal itself. There was more than this, but would take too long to explain. I did a great deal of research, and did all I could to make good, informed choices, and regain agency and personal control in regard to my personal health. I have a personal “alternative” cancer-prevention program which I maintain to this day – nothing drastic, expensive or hard to obtain.

    I felt unable to discuss most of the alternative things I was doing in complete honesty with my medical doctors, because I feared there would be a hostile reaction. I didn’t have the energy to argue to defend the things I was doing which were giving me hope and, in my direct experience, frequently tangibly improving my well-being at an incredibly stressful and difficult time in my life. I had two oncologists assigned, and my gyno-oncologist put a great deal of pressure on me to agree to the initial chemotherapy, which I had felt uncomfortable about from the start. I have a history of MCS, and really felt this placed me a greater risk from the chemo treatments - which turned out to be a well-founded concern.

    In summary: I really value the work my medical specialists did with me, and I believe those treatments saved my life. I also believe my excellent recovery has a great deal to do with the alternative therapies I used. It would be very nice to see a lot less hostility towards natural and alternative therapies in this area. Many are simple, safe, and inexpensive to apply.

    An aside: to me, the hostility toward “placebo” seems especially misplaced. A placebo effect is a real effect. When you are talking about life and death, and rounds of really nasty, debilitating treatments, who cares if a treatment’s beneficial effects are the direct effect of a treatment, or due to a trick in the mind of the patient? I understand in the larger picture we really do need to know if an effect is from a physical cause or not, but a): you are not going to find that out by shouting down the hopes of a vulnerable patient and b): we should be looking at ways to better understand and deliberately stimulate the placebo effect, since it is such a widespread and powerful phenomenon. With nothing to prove otherwise, I’m happy to allow that some of my “successful” alternative therapies may well have been boosted by the placebo effect. I have no shame in that, and in fact allowed knowledge of that possibility to further fuel my hope.
    -Tamsin Kelly

    1. Hi Tamsin, congrats on being cancer free for 5 years!

      I ended up having an ultra low anterior resection with a loop ileostomy and then a reversal of the ileostomy almost a year later.

      Like you, I used treatments around what the doctors were doing, but I prefer to call these 'complementary' and not 'alternative'. To me, an alternative therapy is an option that is equal in nature to the one being offered. Like, choosing between two types of surgeries or choosing between two diets (both of which have evidence to say they work). This is an important distinction because it means we embrace medicine and science, and are complementing it with other therapies and strategies that make us feel good, but that do not contradict our main treatment.

      Interested to know if you agree with that thinking?

  3. Hi Ben; thanks for your response! Certainly when I was intensively in the "treatment space", I was thinking of what I was doing as complimentary rather than opposively alternative. I agree that “complimentary” is a far more useful term for encouraging constructive communication between doctors and patients.

    For example – and here we come back to possible placebo – when undergoing my radiotherapy sessions, I would relax and meditate. I would imagine the radiation was golden/white light from the highest heaven, shining into my body and burning away any cancer cells. I found quite distinctively on a couple of occasions when I had not relaxed and meditated that the short-term (next 24 hours) negative after-effects of the treatment were notably worse.

    Before I became ill, I was afraid of hospitals, afraid of anaesthesia, afraid of surgery and afraid of radiation. I worked hard to rebalance and remain calm in the face of all my fears, because I knew my fear was not serving me, and could actually harm me further if I didn’t. That work, and the support of family and friends, was so important to my recovery.

  4. Going back to your feeling that the doctors wouldn't support your other activities, is there an event you can pinpoint that communicated this or was it based on your experience up until that point with doctors?

  5. I think it was when my gyno-oncologist so bluntly dismissed my concerns around the chemotherapy, without waiting to hear my reasons or anything about my health history related to that. I mentioned above I have Multiple Chemical Sensitivity – which often makes life very awkward and uncomfortable, especially as I do push the envelope as much as I can to live as normal a life as possible. I’m not as ill or sensitive as some with the condition, for which I’m very grateful. For example, I drive, but can only do this with all the vents closed. A few gulps of so-called “fresh air” on the highway in traffic is usually enough to ruin my whole day, and most of the next as well, with migraine and vomiting triggered, sometimes immediately. I’m sensitive to multiple foods, cosmetic ingredients and other environmental elements, and I have to take some care as to what I bring into my home.

    Part of the problem is there are still health professionals who believe my condition is largely in the mind. I didn’t want to risk having my cancer specialists lump me into that kind of category, because then I would be on a hiding to having nothing I said respected or taken seriously, at a time of great vulnerability for me. I’ve had to work very hard over the years to find and nut-out how to best manage my own health. Some doctors have been great but I’ve developed a significant wariness of new doctors after some past bad experiences, and I’ve had to become my own expert.

    Anyway with the chemo, even with the steroids, I was so ill I became severely dehydrated. I was unable to hold down medicine, food or water for days at a time (this is typical of my migraines too, but they rarely last more than 36 hours). I rang the hospital as I had been instructed to do if there were problems, I have to say they were less than helpful, dismissive of my concerns, and discouraged me from coming in. My husband drove me in anyway on several occasions to be rehydrated via a drip. This was all on a “baby dose” of chemotherapy, since I weighed in under 50 kg. I got down to 44 kg while on treatment. Treatment was suspended at 4 doses into a 6 dose course.

    I still suffer a rash that I believe was triggered by the chemotherapy. It started within a couple of weeks on the arm I had three of the four chemo treatments IVed into, but then spread to both arms and my shins, with insignificant outbreaks elsewhere. It’s just an addition to the other health nuisances I have to deal with. At least it’s easy to cover up.

  6. … Annoying to have to note since I had most of the chemo course and the permanent legacy of a rash since; the chemo failed to protect me from secondaries in any case. My second round of radiotherapy treatment was conducted without chemo, and was completely successful in clearing all signs.

  7. ... Also to mention: as with other aspects of my treatment, I really did make a serious attempt to view and deal with my chemotherapy treatment positively as it was happening.

  8. Note: I had no prior history of rashes before commencing my chemotherapy course, although a doctor had advised me years before that my health issues meant I could be vulnerable to them if I could not sufficiently practice "prudent avoidance".

  9. While treating cancer by modern medicine we often focus more on the quantity of life lived, however factors like pain, stress, anxiety, fatigue, fear of death are obvious. alternative cancer treatments