Cancer is increasingly survivable – but it shouldn’t depend on your ability to ‘wrangle’ the health system
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One in three of us will develop cancer at some point in our lives. But survival rates have improved to the point that two-thirds of those diagnosed live more than five years.
This extraordinary shift over the past few decades introduces new challenges. A large and growing proportion of people diagnosed with cancer are living with it, rather than dying of it.
In our recently published research we examined the cancer experiences of 81 New Zealanders (23 Māori and 58 non-Māori).
We found survivorship not only entailed managing the disease, but also “wrangling” a complex health system.
Surviving disease or surviving the system
Our research focused on those who had lived longer than expected (four to 32 years since first diagnosis) with a life-limiting or terminal diagnosis of cancer.
Common to many survivors’ stories was the effort it took to wrangle the system or find others to advocate on their behalf, even to get a formal diagnosis and treatment.
By wrangling we refer to the practices required to traverse complex and sometimes unwelcoming systems. This is an often unnoticed but very real struggle that comes on top of managing the disease itself.
The common focus of the healthcare system is on symptoms, side effects of treatment and other biological aspects of cancer. But formal and informal care often falls by the wayside, despite being key to people’s everyday experiences.
The inequities of cancer survivorship are well known. Analyses show postcodes and socioeconomic status play a strong role in the prevalence of cancer and survival.
Less well known, but illustrated in our research, is that survival is also linked to people’s capacity to manage the entire healthcare system. That includes accessing a diagnosis or treatment, or identifying and accessing alternative treatments.
Survivorship is strongly related to material resources, social connections, and understandings of how the health system works and what is available. For instance, one participant who was contemplating travelling overseas to get surgery not available in New Zealand said:
We don’t trust the public system. So thankfully we had private health insurance […] But if we went overseas, health insurance only paid out to $30,000 and I think the surgery was going to be a couple of hundred thousand. I remember Dad saying and crying and just being like, I’ll sell my business […] we’ll all put in money. It was really amazing.
Assets of survivorship
In New Zealand, the government agency Pharmac determines which medications are subsidised. Yet many participants were advised by oncologists or others to “find ways” of taking costly, unsubsidised medicines.
This often meant finding tens of thousands of dollars with no guarantees. Some had the means, but for others it meant drawing on family savings, retirement funds or extending mortgages. This disproportionately favours those with access to assets and influences who survives.
But access to economic capital is only one advantage. People also have cultural resources – often described as cultural capital.
In one case, a participant realised a drug company was likely to apply to have a medicine approved. They asked their private oncologist to lobby on their behalf to obtain the drug through a compassionate access scheme, without having to pay for it.
Others gained community support through fundraising from clubs they belonged to. But some worried about where they would find the money, or did not want to burden their community.
I had my doctor friend and some others that wanted to do some public fundraising. But at the time I said, “Look, most of the people that will be contributing are people from my community who are poor already, so I’m not going to do that option”.
Accessing alternative therapies, almost exclusively self-funded, was another layer of inequity. Some felt forced to negotiate the black market to access substances such as marijuana to treat their cancer or alleviate the side effects of orthodox cancer treatment.
Cultural capital is not a replacement for access to assets, however. Māori survivorship was greatly assisted by accessing cultural resources, but often limited by lack of material assets.
Persistence pays
The last thing we need when faced with the possibility of cancer is to have to push for formal diagnosis and care. Yet this was a common experience.
One participant was told nothing could be found to explain their abdominal pain – only to find later they had pancreatic cancer. Another was told their concerns about breathing problems were a result of anxiety related to a prior mental health history, only to learn later their earlier breast cancer had spread to their lungs.
Persistence is another layer of wrangling and it often causes distress.
Once a diagnosis was given, for many people the public health system kicked in and delivered appropriate treatment. However, experiences were patchy and variable across New Zealand.
Issues included proximity to hospitals, varying degrees of specialisation available, and the requirement of extensive periods away from home and whānau. This reflects an ongoing unevenness and lack of fairness in the current system.
When facing a terminal or life-limiting diagnosis, the capacity to wrangle the system makes a difference. We shouldn’t have to wrangle, but facing this reality is an important first step.
We must ensure it doesn’t become a continuing form of inequity, whereby people with access to material resources and social and cultural connections can survive longer.
Kevin Dew, Professor of Sociology, Te Herenga Waka — Victoria University of Wellington; Alex Broom, Professor of Sociology & Director, Sydney Centre for Healthy Societies, University of Sydney; Chris Cunningham, Professor of Maori & Public Health, Massey University; Elizabeth Dennett, Associate Professor in Surgery, University of Otago; Kerry Chamberlain, Professor of Social and Health Psychology, Massey University, and Richard Egan, Associate Professor in Health Promotion, University of Otago
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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The Cluttered Mind – by Deborah McKenna
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Coming from an eclectic psychotherapy background, Deborah McKenna outlines a wide array of techniques to “do what it says on the tin”, that is:
Organizing the junk drawer of your mind.
McKenna argues that it’s natural for something so gargantuan as our mind to get cluttered… but that it’s perfectly possible, with a good system, to tidy up considerably.
The benefit of this is much like the benefit of tidying a room:
Imagine a kitchen in which half the things have not been put away; there are dishes in the sink, something is growing behind the trash can… and you have a vague suspicion that if you open a certain cupboard, its contents are going to come falling out on your head. How are you going to cook a meal here?
Imagine a mind when many thoughts have been left untended; there are things you needed to process, and there’s a steady resentment of something growing in some dark part of your mind… and there’s some part of your memory that you’re afraid to even look at it, because of all it’ll cause to come surging back at you. How are you going to strategize your life here?
Fortunately, McKenna is here to guide you through doing for your mind what Marie Kondo would do for your home. And, even better, McKenna does it with a simple and clear writing style, assorted diagrams, and a step-by-step approach to getting everything in order.
Give Your Mind A Spring-Cleaning With This Book From Amazon Today
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A Correction, And A New, Natural Way To Boost Daily Energy Levels
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It’s Q&A Day at 10almonds!
Have a question or a request? You can always hit “reply” to any of our emails, or use the feedback widget at the bottom!
In cases where we’ve already covered something, we might link to what we wrote before, but will always be happy to revisit any of our topics again in the future too—there’s always more to say!
As ever: if the question/request can be answered briefly, we’ll do it here in our Q&A Thursday edition. If not, we’ll make a main feature of it shortly afterwards!
So, no question/request too big or small
First: a correction and expansion!
After yesterday’s issue of 10almonds covering breast cancer risks and checks, a subscriber wrote to say, with regard to our opening statement, which was:
“Anyone (who has not had a double mastectomy, anyway) can get breast cancer”
❝I have been enjoying your newsletter. This statement is misleading and should have a disclaimer that says even someone who has had a double mastectomy can get breast cancer, again. It is true and nothing…nothing is 100% including a mastectomy. I am a 12 year “thriver” (I don’t like to use the term survivor) who has had a double mastectomy. I work with a local hospital to help newly diagnosed patients deal with their cancer diagnosis and the many decisions that follow. A double mastectomy can help keep recurrence from happening but there are no guarantees. I tried to just delete this and let it go but it doesn’t feel right. Thank you!❞
Thank you for writing in about this! We wouldn’t want to mislead, and we’re always glad to hear from people who have been living with conditions for a long time, as (assuming they are a person inclined to learning) they will generally know topics far more deeply than someone who has researched it for a short period of time.
Regards a double mastectomy (we’re sure you know this already, but noting here for greater awareness, prompted by your message), a lot of circumstances can vary. For example, how far did a given cancer spread, and especially, did it spread to the lymph nodes at the armpits? And what tissue was (and wasn’t) removed?
Sometimes a bilateral prophylactic mastectomy will leave the lymph nodes partially or entirely intact, and a cancer could indeed come back, if not every last cancerous cell was removed.
A total double mastectomy, by definition, should have removed all tissue that could qualify as breast tissue for a breast cancer, including those lymph nodes. However, if the cancer spread unnoticed somewhere else in the body, then again, you’re quite correct, it could come back.
Some people have a double mastectomy without having got cancer first. Either because of a fear of cancer due to a genetic risk (like Angelina Jolie), or for other reasons (like Elliot Page).
This makes a difference, because doing it for reasons of cancer risk may mean surgeons remove the lymph nodes too, while if that wasn’t a factor, surgeons will tend to leave them in place.
In principle, if there is no breast tissue, including lymph nodes, and there was no cancer to spread, then it can be argued that the risk of breast cancer should now be the same “zero” as the risk of getting prostate cancer when one does not have a prostate.
But… Surgeries are not perfect, and everyone’s anatomy and physiology can differ enough from “textbook standard” that surprises can happen, and there’s almost always a non-zero chance of certain health outcomes.
For any unfamiliar, here’s a good starting point for learning about the many types of mastectomy, that we didn’t go into in yesterday’s edition. It’s from the UK’s National Health Service:
NHS: Mastectomy | Types of Mastectomy
And for the more sciency-inclined, here’s a paper about the recurrence rate of cancer after a prophylactic double mastectomy, after a young cancer was found in one breast.
The short version is that the measured incidence rate of breast cancer after prophylactic bilateral mastectomy was zero, but the discussion (including notes about the limitations of the study) is well worth reading:
Breast Cancer after Prophylactic Bilateral Mastectomy in Women with a BRCA1 or BRCA2 Mutation
❝[Can you write about] the availability of geriatric doctors Sometimes I feel my primary isn’t really up on my 70 year old health issues. I would love to find a doctor that understands my issues and is able to explain them to me. Ie; my worsening arthritis in regards to food I eat; in regards to meds vs homeopathic solutions.! Thanks!❞
That’s a great topic, worthy of a main feature! Because in many cases, it’s not just about specialization of skills, but also about empathy, and the gap between studying a condition and living with a condition.
About arthritis, we’re going to do a main feature specifically on that quite soon, but meanwhile, you might like our previous article:
Keep Inflammation At Bay (arthritis being an inflammatory condition)
As for homeopathy, your question prompts our poll today!
(and then we’ll write about that tomorrow)
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The Paleo Diet
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What’s The Real Deal With The Paleo Diet?
The Paleo diet is popular, and has some compelling arguments for it.
Detractors, meanwhile, have derided Paleo’s inclusion of modern innovations, and have also claimed it’s bad for the heart.
But where does the science stand?
First: what is it?
The Paleo diet looks to recreate the diet of the Paleolithic era—in terms of nutrients, anyway. So for example, you’re perfectly welcome to use modern cooking techniques and enjoy foods that aren’t from your immediate locale. Just, not foods that weren’t a thing yet. To give a general idea:
Paleo includes:
- Meat and animal fats
- Eggs
- Fruits and vegetables
- Nuts and seeds
- Herbs and spices
Paleo excludes:
- Processed foods
- Dairy products
- Refined sugar
- Grains of any kind
- Legumes, including any beans or peas
Enjoyers of the Mediterranean Diet or the DASH heart-healthy diet, or those with a keen interest in nutritional science in general, may notice they went off a bit with those last couple of items at the end there, by excluding things that scientific consensus holds should be making up a substantial portion of our daily diet.
But let’s break it down…
First thing: is it accurate?
Well, aside from the modern cooking techniques, the global market of goods, and the fact it does include food that didn’t exist yet (most fruits and vegetables in their modern form are the result of agricultural engineering a mere few thousand years ago, especially in the Americas)…
…no, no it isn’t. Best current scientific consensus is that in the Paleolithic we ate mostly plants, with about 3% of our diet coming from animal-based foods. Much like most modern apes.
Ok, so it’s not historically accurate. No biggie, we’re pragmatists. Is it healthy, though?
Well, health involves a lot of factors, so that depends on what you have in mind. But for example, it can be good for weight loss, almost certainly because of cutting out refined sugar and, by virtue of cutting out all grains, that means having cut out refined flour products, too:
Diet Review: Paleo Diet for Weight Loss
Measured head-to-head with the Mediterranean diet for all-cause mortality and specific mortality, it performed better than the control (Standard American Diet, or “SAD”), probably for the same reasons we just mentioned. However, it was outperformed by the Mediterranean Diet:
So in lay terms: the Paleo is definitely better than just eating lots of refined foods and sugar and stuff, but it’s still not as good as the Mediterranean Diet.
What about some of the health risk claims? Are they true or false?
A common knee-jerk criticism of the paleo-diet is that it’s heart-unhealthy. So much red meat, saturated fat, and no grains and legumes.
The science agrees.
For example, a recent study on long-term adherence to the Paleo diet concluded:
❝Results indicate long-term adherence is associated with different gut microbiota and increased serum trimethylamine-N-oxide (TMAO), a gut-derived metabolite associated with cardiovascular disease. A variety of fiber components, including whole grain sources may be required to maintain gut and cardiovascular health.❞
Bottom line:
The Paleo Diet is an interesting concept, and certainly can be good for short-term weight loss. In the long-term, however (and: especially for our heart health) we need less meat and more grains and legumes.
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The Wim Hof Method – by Wim Hof
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In Wednesday’s main feature, we wrote about the Wim Hof Method, and/but only scratched the surface. Such is the downside of being a super-condensed newsletter! However, it does give us the opportunity to feature the book:
The Wim Hof Method is definitely loudly trumpeted as “up there” with Atomic Habits or How Not To Die in the category of “life-changing” books. Why?
Firstly, it’s a very motivational book. Hof is a big proponent of the notion “if you think you can or you think you can’t, you’re right” idea, practises what he preaches, and makes clear he’s not special.
Secondly, it’s backed up with science. While it’s not a science-heavy book and that’s not the main focus, there are references to studies. Where physiological explanations are given for how certain things work, those explanations are sound. There’s no pseudoscience here, which is especially important for a book of this genre!
What does the book have that our article didn’t? A good few things:
- More about Hof’s own background and where it’s taken him. This is generally not a reason people buy books (unless they are biographies), but it’s interesting nonetheless.
- A lot more advice, data, and information about Cold Therapy and how it can (and, he argues convincingly, should) be built into your life.
- A lot about breathing exercises that we just didn’t cover at all in our article, but is actually an important part of the Wim Hof Method.
- More about stepping through the psychological barriers that can hold us back.
Bottom line: this book offers benefits that stretch into many areas of life, from some simple habits that can be built.
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Qigong: A Breath Of Fresh Air?
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Qigong: Breathing Is Good (Magic Remains Unverified)
In Tuesday’s newsletter, we asked you for your opinions of qigong, and got the above-depicted, below-described, set of responses:
- About 55% said “Qigong is just breathing, but breathing exercises are good for the health”
- About 41% said “Qigong helps regulate our qi and thus imbue us with healthy vitality”
- One (1) person said “Qigong is a mystical waste of time and any benefits are just placebo”
The sample size was a little low for this one, but the results were quite clearly favorable, one way or another.
So what does the science say?
Qigong is just breathing: True or False?
True or False, depending on how we want to define it—because qigong ranges in its presentation from indeed “just breathing exercises”, to “breathing exercises with visualization” to “special breathing exercises with visualization that have to be exactly this way, with these hand and sometimes body movements also, which also must be just right”, to far more complex definitions that involve qi by various mystical definitions, and/or an appeal to a scientific analog of qi; often some kind of bioelectrical field or such.
There is, it must be said, no good quality evidence for the existence of qi.
Writer’s note, lest 41% of you want my head now: I’ve been practicing qigong and related arts for about 30 years and find such to be of great merit. This personal experience and understanding does not, however, change the state of affairs when it comes to the availability (or rather, the lack) of high quality clinical evidence to point to.
Which is not to say there is no clinical evidence, for example:
Acute Physiological and Psychological Effects of Qigong Exercise in Older Practitioners
…found that qigong indeed increased meridian electrical conductance!
Except… Electrical conductance is measured with galvanic skin responses, which increase with sweat. But don’t worry, to control for that, they asked participants to dry themselves with a towel. Unfortunately, this overlooks the fact that a) more sweat can come where that came from, because the body will continue until it is satisfied of adequate homeostasis, and b) drying oneself with a towel will remove the moisture better than it’ll remove the salts from the skin—bearing in mind that it’s mostly the salts, rather than the moisture itself, that improve the conductivity (pure distilled water does conduct electricity, but not very well).
In other words, this was shoddy methodology. How did it pass peer review? Well, here’s an insight into that journal’s peer review process…
❝The peer-review system of EBCAM is farcical: potential authors who send their submissions to EBCAM are invited to suggest their preferred reviewers who subsequently are almost invariably appointed to do the job. It goes without saying that such a system is prone to all sorts of serious failures; in fact, this is not peer-review at all, in my opinion, it is an unethical sham.❞
~ Dr. Edzard Ernst, a founding editor of EBCAM (he since left, and decries what has happened to it since)
One of the other key problems is: how does one test qigong against placebo?
Scientists have looked into this question, and their answers have thus far been unsatisfying, and generally to the tune of the true-but-unhelpful statement that “future research needs to be better”:
Problems of scientific methodology related to placebo control in Qigong studies: A systematic review
Most studies into qigong are interventional studies, that is to say, they measure people’s metrics (for example, blood pressure, heart rate, maybe immune function biomarkers, sleep quality metrics of various kinds, subjective reports of stress levels, physical biomarkers of stress levels, things like that), then do a course of qigong (perhaps 6 weeks, for example), then measure them again, and see if the course of qigong improved things.
This almost always results in an improvement when looking at the before-and-after, but it says nothing for whether the benefits were purely placebo.
We did find one study that claimed to be placebo-controlled:
…but upon reading the paper itself carefully, it turned out that while the experimental group did qigong, the control group did a reading exercise. Which is… Saying how well qigong performs vs reading (qigong did outperform reading, for the record), but nothing for how well it performs vs placebo, because reading isn’t a remotely credible placebo.
See also: Placebo Effect: Making Things Work Since… Well, A Very Long Time Ago ← this one explains a lot about how placebo effect does work
Qigong is a mystical waste of time: True or False?
False! This one we can answer easily. Interventional studies invariably find it does help, and the fact remains that even if placebo is its primary mechanism of action, it is of benefit and therefore not a waste of time.
Which is not to say that placebo is its only, or even necessarily primary, mechanism of action.
Even from a purely empirical evidence-based medicine point of view, qigong is at the very least breathing exercises plus (usually) some low-impact body movement. Those are already two things that can be looked at, mechanistic processes pointed to, and declarations confidently made of “this is an activity that’s beneficial for health”.
See for example:
- Effects of Qigong practice in office workers with chronic non-specific low back pain: A randomized control trial
- Qigong for the Prevention, Treatment, and Rehabilitation of COVID-19 Infection in Older Adults
- Impact of Medical Qigong on quality of life, fatigue, mood and inflammation in cancer patients: a randomized controlled trial
…and those are all from respectable journals with meaningful peer review processes.
None of them are placebo-controlled, because there is no real option of “and group B will only be tricked into believing they are doing deep breathing exercises with low-impact movements”; that’s impossible.
But! They each show how doing qigong reliably outperforms not doing qigong for various measurable metrics of health.
And, we chose examples with physical symptoms and where possible empirically measurable outcomes (such as COVID-19 infection levels, or inflammatory responses); there are reams of studies showings qigong improves purely subjective wellbeing—but the latter could probably be claimed for any enjoyable activity, whereas changes in inflammatory biomarkers, not such much.
In short: for most people, it indeed reliably helps with many things. And importantly, it has no particular risks associated with it, and it’s almost universally framed as a complementary therapy rather than an alternative therapy.
This is critical, because it means that whereas someone may hold off on taking evidence-based medicines while trying out (for example) homeopathy, few people are likely to hold off on other treatments while trying out qigong—since it’s being viewed as a helper rather than a Hail-Mary.
Want to read more about qigong?
Here’s the NIH’s National Center for Complementary and Integrative Health has to say. It cites a lot of poor quality science, but it does mention when the science it’s citing is of poor quality, and over all gives quite a rounded view:
Enjoy!
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Surgery is the default treatment for ACL injuries in Australia. But it’s not the only way
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The anterior cruciate ligament (ACL) is an important ligament in the knee. It runs from the thigh bone (femur) to the shin bone (tibia) and helps stabilise the knee joint.
Injuries to the ACL, often called a “tear” or a “rupture”, are common in sport. While a ruptured ACL has just sidelined another Matildas star, people who play sport recreationally are also at risk of this injury.
For decades, surgical repair of an ACL injury, called a reconstruction, has been the primary treatment in Australia. In fact, Australia has among the highest rates of ACL surgery in the world. Reports indicate 90% of people who rupture their ACL go under the knife.
Although surgery is common – around one million are performed worldwide each year – and seems to be the default treatment for ACL injuries in Australia, it may not be required for everyone.
PeopleImages.com – Yuri A/Shutterstock What does the research say?
We know ACL ruptures can be treated using reconstructive surgery, but research continues to suggest they can also be treated with rehabilitation alone for many people.
Almost 15 years ago a randomised clinical trial published in the New England Journal of Medicine compared early surgery to rehabilitation with the option of delayed surgery in young active adults with an ACL injury. Over half of people in the rehabilitation group did not end up having surgery. After five years, knee function did not differ between treatment groups.
The findings of this initial trial have been supported by more research since. A review of three trials published in 2022 found delaying surgery and trialling rehabilitation leads to similar outcomes to early surgery.
A 2023 study followed up patients who received rehabilitation without surgery. It showed one in three had evidence of ACL healing on an MRI after two years. There was also evidence of improved knee-related quality of life in those with signs of ACL healing compared to those whose ACL did not show signs of healing.
Experts used to think an ACL tear couldn’t heal without surgery – now there’s evidence it can. SKYKIDKID/Shutterstock Regardless of treatment choice the rehabilitation process following ACL rupture is lengthy. It usually involves a minimum of nine months of progressive rehabilitation performed a few days per week. The length of time for rehabilitation may be slightly shorter in those not undergoing surgery, but more research is needed in this area.
Rehabilitation starts with a physiotherapist overseeing simple exercises right through to resistance exercises and dynamic movements such as jumping, hopping and agility drills.
A person can start rehabilitation with the option of having surgery later if the knee remains unstable. A common sign of instability is the knee giving way when changing direction while running or playing sports.
To rehab and wait, or to go straight under the knife?
There are a number of reasons patients and clinicians may opt for early surgical reconstruction.
For elite athletes, a key consideration is returning to sport as soon as possible. As surgery is a well established method, athletes (such as Matilda Sam Kerr) often opt for early surgical reconstruction as this gives them a more predictable timeline for recovery.
At the same time, there are risks to consider when rushing back to sport after ACL reconstruction. Re-injury of the ACL is very common. For every month return to sport is delayed until nine months after ACL reconstruction, the rate of knee re-injury is reduced by 51%.
For people who opt to try rehabilitation, the option of having surgery later is still there. PeopleImages.com – Yuri A/Shutterstock Historically, another reason for having early surgical reconstruction was to reduce the risk of future knee osteoarthritis, which increases following an ACL injury. But a review showed ACL reconstruction doesn’t reduce the risk of knee osteoarthritis in the long term compared with non-surgical treatment.
That said, there’s a need for more high-quality, long-term studies to give us a better understanding of how knee osteoarthritis risk is influenced by different treatments.
Rehab may not be the only non-surgical option
Last year, a study looking at 80 people fitted with a specialised knee brace for 12 weeks found 90% had evidence of ACL healing on their follow-up MRI.
People with more ACL healing on the three-month MRI reported better outcomes at 12 months, including higher rates of returning to their pre-injury level of sport and better knee function. Although promising, we now need comparative research to evaluate whether this method can achieve similar results to surgery.
What to do if you rupture your ACL
First, it’s important to seek a comprehensive medical assessment from either a sports physiotherapist, sports physician or orthopaedic surgeon. ACL injuries can also have associated injuries to surrounding ligaments and cartilage which may influence treatment decisions.
In terms of treatment, discuss with your clinician the pros and cons of management options and whether surgery is necessary. Often, patients don’t know not having surgery is an option.
Surgery appears to be necessary for some people to achieve a stable knee. But it may not be necessary in every case, so many patients may wish to try rehabilitation in the first instance where appropriate.
As always, prevention is key. Research has shown more than half of ACL injuries can be prevented by incorporating prevention strategies. This involves performing specific exercises to strengthen muscles in the legs, and improve movement control and landing technique.
Anthony Nasser, Senior Lecturer in Physiotherapy, University of Technology Sydney; Joshua Pate, Senior Lecturer in Physiotherapy, University of Technology Sydney, and Peter Stubbs, Senior Lecturer in Physiotherapy, University of Technology Sydney
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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