Why I am Using Research-Based Medical Treatments Instead of Naturopathic Treatments
I’ve heard many stories of people being sent links to websites promoting alternate naturopathic treatments for cancer by well meaning friends and family. It finally happened to me. I got an email from an acquaintance who told me she believed that I was making a mistake signing up for a clinical trial, and that I should be using natural treatments based on diet and supplements such as turmeric and IV vitamin C. She quoted the saying “Let Food be your Medicine”, and pointed me towards the website thetruthaboutcancer (no, I am NOT going to link to that site from my blog, it gets enough traffic). She also told me that I was signing up to be a guinea pig.
This blog post has been in the works in my thoughts ever since. I do not think that this good-hearted person is on the right track, and sincerely hope that, for her sake, she never develops cancer and never has to put her alternate treatments to the test. In thinking about what she said, however, I finally crystallized for myself the reason why I will not pursue the line of treatments she would suggest.
It’s only outliers.
The first thing I appreciate about research-based medicine is its honesty. Medical scientists and doctors know that when it comes to advanced cancer, most of their treatments suck and have limited success. They keep track of their failures as well as their successes, and will inform you of probabilities of effectiveness if you ask for them.
Diseases and treatments have outliers - the people who have radical remissions, who have an exceptional response to treatment, who against all odds recover. The treatment I just stopped using, Tarceva, has its outliers. If you visit the patient support forums at websites like Inspire.com, you will find stories of people who have successfully used Tarceva for 4, 5, and more years, and even a lucky few who are NED (No Evidence of Disease). When my doctors talked to me about Tarceva, however, they did not promise me those 4 or 5 years, much less NED, or even suggest that such success might be possible. They told me about the median response of 9 to 11 months. They were honest with me.
The same goes for the experimental drug I have just started taking. I’ve been told that about 500 people have taken this drug, and about the range of side effects they have experienced. I’ve been told that data are incomplete because clinical trials are still in progress, but that initial results suggest a median response of 9 to 11 months.
When it comes to getting similar types of information about naturopathic treatments, however, no such data seem to exist. There are individual stories and testimonials. “I know someone who...” and “I heard about someone who...”, an occasional “I am someone who...”. The naturopathic doctors, however, do not seem to be collecting data about their successes - or their failures. Maybe there is some hurdle to collecting and communicating information that I can’t see, but it seems to me that practitioners offering treatments that are superior would have a strong incentive to join together to pool information that would prove the success of their approach. If naturopaths could do this, the cancer centers would be empty within days.
To be completely clear: yes, I want to be an outlier. I would love to be one of the people who beats expectations. When looking for an approach to get there, however, I’m distrustful of treatments that can offer me ONLY outliers, with only stories and anecdotes even proving that those outliers exist.
The path of research-based medicine has its outliers as well- outliers included in evidence that includes everyone, not just a few selected success stories.
I can only conclude that I really would be a guinea pig if I were to seek only naturopathic treatments.
Boring fact-based stuff I looked at while thinking about this post:
Being who I am, of course I looked for information on the Internet. I did a Google search on “survival data naturopathic therapies”, and did not find much in the way of scholarly papers or analytical articles. I did find the following:
- A compelling article written by pharmacist Scott Gavura, who sought out studies looking at outcomes for women with breast cancer who used only alternative treatments or refused treatment. He found 5 such studies. All of the studies show shorter survival times for women who refused standard medical treatment. https://www.sciencebasedmedicine.org/rejecting-cancer-treatment-what-are-the-consequences/#disqus_thread
- The abstracts for two of the studies discussed by Gavura. http://www.wjso.com/content/10/1/118/abstract
http://link.springer.com/article/10.1245%2Fs10434-010-1487-0
- A retrospective study comparing survival in lung cancer patients who received long-term integrative cancer treatment combining standard medical treatments with naturopathic treatments, patients who received short-term integrative cancer treatments, and control groups who received standard treatments only. The study purports to show that patients who receive long term integrative treatment have better survival times. The discussion discloses a significant flaw in the study: the control groups did not receive the same standard treatments as the integrative treatment groups, being much more likely to receive radiation rather than chemotherapy. In addition, standard treatment is not being compared to naturopathic treatments - every patient in the study received standard treatment. http://naturalmedicinejournal.com/journal/2011-12/benefits-integrative-cancer-treatments-lung-cancer-patients-0
- An article about integrative oncology featuring the work of Dr. Leanna Standish. Again, this article is talking about using alternative treatments in addition to standard medical treatments, not replacing the standard treatments. The number of patients involved is very small. http://www.medscape.com/viewarticle/813217
- As a counterpoint to the article just above, a discussion of how survival statistics can be skewed simply by excluding groups of patients from treatment, and therefore from the statistics, for example Medicare patients. http://scienceblogs.com/insolence/2013/03/07/the-cancer-treatment-centers-of-america-cherry-picked/
It seems likely to me that many people hearing a cancer diagnosis with the prognosis of very limited survival time might choose a treatment which offers hope. In a panicked quest for a cure, the fact that the treatment is not truly evidence-based might not be considered by them.
ReplyDeleteI don't feel there is any excuse for "a well-meaning friend" who has not experienced the cancer or the "cure" she is advocating to be suggesting it to you or to anyone who actually has the disease.
I am glad that you are wise and have a respect for research-based treatments. I am so very inspired by your approach to living with your illness. Most of all, I hope that you will be one of those outliers, because you make the world a better place.
Ah, those well-meaning friends!
ReplyDeleteExcellent article, thank you. Well written and well-researched with good links. I totally agree with you and, if you don't mind, am going to link to the article in various other social media places when needed.
I came here via your post on the 'Inspire' forum and my god, that forum needs a good healthy dose of anti-woo injecting! My own interest is that I am Stage 4 incurable lung cancer.
Thank you again.
Lysistrata, please do share this post. I wrote it because I thought it could be helpful to others. Thank you very much for your positive comments.
DeleteI enjoyed reading your Inspire profile, and have found your comments there to always be of interest. All best wishes to you.
You are a kind and gracious person. I am outraged that anyone would dare to proselytize quakery to you. It is not his/her life, and your choices do not belong to him/her. I would not think of giving unsolicited medical advice to anyone. And anyone who is so willing to deny science has no answers I want to hear. The short take: this acquaintance is astoundingly rude and socially tone deaf.
ReplyDeleteShared! Thanks for writing.
ReplyDeleteWonderful article, Anita! Thoughtful, well-written, and well-researched. I can only imagine the frustration those well-meaning friends bring. . .
ReplyDeleteWhat always amazes me is that people accept (with breast cancer) that a sentinel node biopsy is as good as taking out all the nodes, that a lumpectomy with radiation is equal with a mastectomy - both findings a result of scientific study. And then it comes to chemo and suddenly science is ignored, the "big bad pharma conspiracy theory" are put forth, and woo and snake oil is suggested. Last I knew gravity (eg science) always worked, not just when we wanted it to...
ReplyDeleteWell researched and well said, so glad I found and read your blog. And how about this? Free newspaper "In Good Health", July issue (pg. 24) features an article on knitting as it plays a role at Lipson Cancer Center in relieving stress! But you already knew that. Love always.
ReplyDelete