Next steps: conventional, complimentary or alternative?

Another NHS letter

Time for an update (see here for background info)….it’s been a busy year learning to live with cancer and my father being ill then dying. My PSA does seem to have responded to the transurethral hyperthermia, hormone treatment and significant lifestyle changes; it was originally 18.96 ng/ml and is now 5.5. However this, as my oncologist warned me two weeks ago, is still in the ‘red zone’ (and could lead to metastasis if it has not already done so). He made an ‘urgent’ referral to the surgeon for me to consider an operation. It seems, Glos NHS though is stretched, so already my 20th Dec appointment has been cancelled twice and is now on 14th January. 

It is strangely unnerving when one of those NHS letters arrive, not being quite sure what it contains. Certainly at the moment I am swinging from hope to despair and back again. I am weighing what course of action to take. It is so hard with such little info (or is that too much information?) and so many questions... 

Jo Lawrance cartoon

PSA is notoriously unreliable as a test; how much do I rely on this and my previous tests and scans from well over a year ago to make a decision?

Other tests/scans all have their challenges regarding what they can show about cancer; MRI for example has no ionising radiation but can’t tell if the growth is cancerous. What would be the best test/scan to gain a clearer picture?
 
What are the risks of metastasis?

Radical prostatectomy or radiation treatment are standard NHS treatments with what they say are the 'best outcomes’ for prostate cancer, but they often come with some dire side-effects and are not full proof in terms of tackling cancer. How can I try and reduce such side effects if I go down this route?

There are many other possible treatments, but many of these have less long term research regarding their outcomes; that goes for both the newer conventional treatments like proton beam and the complimentary ones. What choices are realistic?


Conventional, complimentary or alternative medicine?

One area I have been exploring is around the evidence for different approaches. There is a paucity of evidence regarding whether the use of complementary and alternative medicine (CAM) compared to conventional therapy has an adverse effect on cancer survival. However, many folk have strong views. For example David Gorski writing in the Science-Based Medicine website (2017) (i), known for it’s challenges to alternative approaches to medicine, concludes: "Use of alternative medicine alone to treat cancer is likely to be a death sentence, or at least to cause delays that make ultimate cancer treatment with conventional medicine more difficult and less likely to be successful”. 

However, it seems to me that little of use can be gleaned from a lot of this comparison research as the label ‘alternative medicine’ includes too many approaches to enable a study to come up with much that is meaningful. There are also different views about what constitutes complimentary and what is alternative - and for that matter there can also be wide differences between countries about what treatments are common. For example Mistletoe injections are rare in this country and not recognised by UK or US for cancer treatment yet they are common in Germany. Indeed The Ecologist reported in 2006 (ii) that: "More than 50 per cent of cancer patients in Germany are given 'mistletoe therapy' during their treatment and it is often considered a part of the oncologist's repertoire."

One recent study by Skyler et al (2017)(iii), concluded; 'we found that cancer patients who initially chose treatment with alternative medicine without conventional cancer treatment were more likely to die’. Scary for those choosing alternative treatments alone, but when you start unpicking this it is not so straightforward. For example they found no statistically significant association between alternative medicine use and survival for patients with prostate cancer.

It seems to me that different approaches have much to learn from each other. Certainly there is far too much nonsense and over-sell in some alternative medicine approaches. The number of wacky treatments available is huge and growing. It seems to me we need to be better able to assess ourselves whether they might be useful. There is a useful TED talk (iv) that looks at this - in particular explores confirmation bias - that is the tendency to only accept information that supports your personal beliefs. Such bias can lead us astray on social media, in politics and indeed in treatment choices and the way we look at our health. The talk offers three practical tools for finding evidence you can actually trust.

I don’t agree with the approach by Pinterest to websites discussing alternative treatments - they have just shut down accounts for Mercola.com, GreenMedInfo.com, the Truth About Cancer, Health Impact News, ChrisBeatCancer.com, and many more for “violating community guidelines” (v). Earlier this year Google were also found to be suppressing medical information and other content that the company deems unfit for readers (vi). This is surely limiting free speech and will just confirm views of anyone who thinks Big Pharma and others don’t want us to get well without buying their treatments? 

Quote from presentation by Grant Hatch

And what of the nonsense in conventional medicine like doctors who do not give advice about the importance of exercise, or dismiss healthier diets as 'not necessary' or 'useful’? Or ignore the impact the mind can have on the body? And why in the UK are treatments like high-intensity focused ultrasound (HIFU) for prostate cancer (that has been around mainland Europe for over fifteen years), only just seeing clinical trials in the UK? And conventional seems way too wedded to big Pharma and completely ignoring approaches like using curcumin (turmeric) - there is loads of research about its benefits to those of us with cancer.

Anyway I should conclude this blog….this is certainly not the end of this discussion...lots of food for thought as I plan my next steps on my journey to wellness. Seasonal greetings to all readers and here’s to a healthy 2019!

Update 17.05.19: Blog looking at research by Yale, 'The Danger of Complementary and Alternative Medicine':
https://pcnrv.blogspot.com/2018/07/the-danger-of-complementary-and.html

Notes:

(i) See: https://sciencebasedmedicine.org/alternative-medicine-kills-cancer-patients/
(ii) See: https://theecologist.org/2009/dec/18/cancer-drug-other-use-mistletoe
(iii) Journal of the National Cancer Institute by Skyler et al, entitled “Use of Alternative Medicine for Cancer and Its Impact on Survival.” https://academic.oup.com/jnci/article/110/1/121/4064136
(iv) See: https://www.ted.com/talks/alex_edmans_what_to_trust_in_a_post_truth_world

(v) See: https://thetruthaboutcancer.com/pinterest-censorship/

(vi) See: https://www.naturalnews.com/2018-06-13-google-is-actively-censoring-natural-health-websites-to-protect-big-pharma.html