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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Bored of Lunch – by Nathan Anthony
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Cooking with a slow cooker is famously easy, but often we settle down on a few recipes and then don’t vary. This book brings a healthy dose of inspiration and variety.
The recipes themselves range from comfort food to fancy entertaining, pasta dishes to risottos, and even what the author categorizes as “fakeaways” (a play on the British English “takeaway”, cf. AmE “takeout”), so indulgent nights in have never been healthier!
For each recipe, you’ll see a nice simple clear layout of all you’d expect (ingredients, method, etc) plus calorie count, so that you can have a rough idea of how much food each meal is.
In terms of dietary restrictions you may have, there’s quite a variety here so it’ll be easy to find things for all needs, and in addition to that, optional substitutions are mostly quite straightforward too.
Bottom line: if you have a slow cooker but have been cooking only the same three things in it for the past ten years, this is the book to liven things up, while staying healthy!
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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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Bird flu has been detected in a pig in the US. Why does that matter?
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The United States Department of Agriculture last week reported that a pig on a backyard farm in Oregon was infected with bird flu.
As the bird flu situation has evolved, we’ve heard about the A/H5N1 strain of the virus infecting a range of animals, including a variety of birds, wild animals and dairy cattle.
Fortunately, we haven’t seen any sustained spread between humans at this stage. But the detection of the virus in a pig marks a worrying development in the trajectory of this virus.
David MG/Shutterstock How did we get here?
The most concerning type of bird flu currently circulating is clade 2.3.4.4b of A/H5N1, a strain of influenza A.
Since 2020, A/H5N1 2.3.4.4b has spread to a vast range of birds, wild animals and farm animals that have never been infected with bird flu before.
While Europe is a hotspot for A/H5N1, attention is currently focused on the US. Dairy cattle were infected for the first time in 2024, with more than 400 herds affected across at least 14 US states.
Bird flu has enormous impacts on farming and commercial food production, because infected poultry flocks have to be culled, and infected cows can result in contaminated diary products. That said, pasteurisation should make milk safe to drink.
While farmers have suffered major losses due to H5N1 bird flu, it also has the potential to mutate to cause a human pandemic.
Birds and humans have different types of receptors in their respiratory tract that flu viruses attach to, like a lock (receptors) and key (virus). The attachment of the virus allows it to invade a cell and the body and cause illness. Avian flu viruses are adapted to birds, and spread easily among birds, but not in humans.
So far, human cases have mainly occurred in people who have been in close contact with infected farm animals or birds. In the US, most have been farm workers.
The concern is that the virus will mutate and adapt to humans. One of the key steps for this to happen would be a shift in the virus’ affinity from the bird receptors to those found in the human respiratory tract. In other words, if the virus’ “key” mutated to better fit with the human “lock”.
A recent study of a sample of A/H5N1 2.3.4.4b from an infected human had worrying findings, identifying mutations in the virus with the potential to increase transmission between human hosts.
Why are pigs a problem?
A human pandemic strain of influenza can arise in several ways. One involves close contact between humans and animals infected with their own specific flu viruses, creating opportunities for genetic mixing between avian and human viruses.
Pigs are the ideal genetic mixing vessel to generate a human pandemic influenza strain, because they have receptors in their respiratory tracts which both avian and human flu viruses can bind to.
This means pigs can be infected with a bird flu virus and a human flu virus at the same time. These viruses can exchange genetic material to mutate and become easily transmissible in humans.
The Conversation, CC BY-SA Interestingly, in the past pigs were less susceptible to A/H5N1 viruses. However, the virus has recently mutated to infect pigs more readily.
In the recent case in Oregon, A/H5N1 was detected in a pig on a non-commercial farm after an outbreak occurred among the poultry housed on the same farm. This strain of A/H5N1 was from wild birds, not the one that is widespread in US dairy cows.
The infection of a pig is a warning. If the virus enters commercial piggeries, it would create a far greater level of risk of a pandemic, especially as the US goes into winter, when human seasonal flu starts to rise.
How can we mitigate the risk?
Surveillance is key to early detection of a possible pandemic. This includes comprehensive testing and reporting of infections in birds and animals, alongside financial compensation and support measures for farmers to encourage timely reporting.
Strengthening global influenza surveillance is crucial, as unusual spikes in pneumonia and severe respiratory illnesses could signal a human pandemic. Our EPIWATCH system looks for early warnings of such activity, which can speed up vaccine development.
If a cluster of human cases occurs, and influenza A is detected, further testing (called subtyping) is essential to ascertain whether it’s a seasonal strain, an avian strain from a spillover event, or a novel pandemic strain.
Early identification can prevent a pandemic. Any delay in identifying an emerging pandemic strain enables the virus to spread widely across international borders.
Australia’s first human case of A/H5N1 occurred in a child who acquired the infection while travelling in India, and was hospitalised with illness in March 2024. At the time, testing revealed Influenza A (which could be seasonal flu or avian flu), but subtyping to identify A/H5N1 was delayed.
This kind of delay can be costly if a human-transmissible A/H5N1 arises and is assumed to be seasonal flu because the test is positive for influenza A. Only about 5% of tests positive for influenza A are subtyped further in Australia and most countries.
In light of the current situation, there should be a low threshold for subtyping influenza A strains in humans. Rapid tests which can distinguish between seasonal and H5 influenza A are emerging, and should form part of governments’ pandemic preparedness.
A higher risk than ever before
The US Centers for Disease Control and Prevention states that the current risk posed by H5N1 to the general public remains low.
But with H5N1 now able to infect pigs, and showing worrying mutations for human adaptation, the level of risk has increased. Given the virus is so widespread in animals and birds, the statistical probability of a pandemic arising is higher than ever before.
The good news is, we are better prepared for an influenza pandemic than other pandemics, because vaccines can be made in the same way as seasonal flu vaccines. As soon as the genome of a pandemic influenza virus is known, the vaccines can be updated to match it.
Partially matched vaccines are already available, and some countries such as Finland are vaccinating high-risk farm workers.
C Raina MacIntyre, Professor of Global Biosecurity, NHMRC L3 Research Fellow, Head, Biosecurity Program, Kirby Institute, UNSW Sydney and Haley Stone, Research Associate, Biosecurity Program, Kirby Institute & CRUISE lab, Computer Science and Engineering, UNSW Sydney
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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‘I can’t quite shut it off’: Prevalence of insomnia a growing concern for women
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
Tasha Werner, 43, gets up at 3:30 a.m. twice a week for her part-time job at a fitness centre in Calgary. After a five-hour shift, she is back home by 9 a.m. to homeschool her two children, aged 9 and 12. The hardest part of her position – stay-at-home mom, homeschool teacher and part-time worker – is the downtime “lost from my life,” says Werner.A study by Howard M. Kravitz, a psychiatrist in Chicago, showed that up to 60 per cent of women experience sleep disorders due to hormonal changes linked to menopause. But there is an increasing prevalence of insomnia symptoms in women that may be attributed, in part, to societal changes.
“We live in a world that didn’t exist a generation ago. Now everyone is trying to figure it out,” says Michael Grandner, director of the Sleep and Health Research Program at the University of Arizona.
While women are no longer expected to stay at home, many who are employed outside the home also have the primary responsibility for family matters. And women aged 40 to 60 commonly fall within the “sandwich generation,” caring for both children and parents.
As women juggle their responsibilities, these duties can take a toll, both emotionally and practically.
Both Werner and her husband were raised in traditional homes; their mothers stayed at home to oversee childcare, cooking, grocery shopping and household duties. Initially, Werner and her husband followed a similar path, mirroring their parents’ lives as homemakers. “I think we just fell into what we were used to,” says Werner.
However, a notable shift in their family dynamics occurred once she started working outside the home.
Her children’s physical needs and illnesses have had major consequences on her sleep. If one of the children is sick with the flu, that’s “a week of not a lot of sleep during the night,” she says, “because that’s my job.” Many nights, she finds herself waking up between 1 a.m. and 3 a.m., worrying about how the kids are doing academically or behaviourally.
“We face a specific set of anxieties and a different set of pressures than men,” says Emma Kobil, who has been a therapist in Denver, Colo., for 15 years and is now an insomnia coach. There is so much pressure to be everything as a woman – to be an amazing homemaker and worker while maintaining a hot-rocking body and having a cool personality, to “be the cool mom but also the CEO, to follow your dreams and be the boss b****,” says Kobil.
And there’s an appeal to that concept. Daughters grow up viewing their moms as superwomen juggling responsibilities. But what isn’t always obvious are the challenges women face while managing their lives and the health issues they may encounter.
A study revealed that women are 41 per cent more at risk of insomnia than men.
A thorough study revealed that women are 41 per cent more at risk of insomnia than men. Beyond menopausal hormonal shifts, societal pressures, maternal concerns and the challenge of balancing multiple roles contribute to women’s increased susceptibility to insomnia.
Cyndi Aarrestad, 57, lives on a farm in Saskatchewan with her husband, Denis. Now an empty nester, Aarrestad fills her time working on the farm, keeping house, volunteering at her church and managing her small woodworking business. And she struggles with sleep.
Despite implementing some remedies, including stretching, drinking calming teas and rubbing her feet before bed, Aarrestad says achieving restful sleep has remained elusive for the past decade.
Two primary factors contribute to her sleep challenges — her inability to quiet her mind and hormonal hot flashes due to menopause. Faced with family and outside commitments, Aarrestad finds it challenging to escape night time’s mental chatter. “It’s a mom thing for me … I can’t quite shut it off.” Even as her children transitioned to young adulthood and moved out, the worries persisted, highlighting the lasting concerns moms have about their kids’ jobs, relationships and overall well-being.
Therapist Kobil says that every woman she’s ever worked with experiences this pressure to do everything, to be perfect. These women feel like they’re not measuring up. They’re encouraged to take on other people’s burdens; to be the confidante and the saviour in many ways; to sacrifice themselves. Sleep disruptions simply reflect the consequences of this pressure.
“They’re trying to fit 20 hours in a 24-hour day, and it doesn’t work,” says Grandner, the sleep specialist.
Grandner says that consistently sleeping six hours or less as an adult makes one 55 per cent more likely to become obese, 20 per cent more likely to develop high blood pressure, and 30 per cent more likely to develop Type 2 diabetes if you didn’t have it already. This lack of sleep makes you more likely to catch the flu. It makes vaccines less effective, and it increases your likelihood of developing depression and anxiety.
When is the time to change? Yesterday. Grandner warns that the sleep sacrifices made at a young age impact health later. But it’s never too late to make changes, he says, and “you do the best with what you’ve got.”
Kobil suggests a practical approach for women struggling with sleep. She emphasizes understanding that sleeplessness isn’t a threat and encourages a shift in mindset about being awake. Instead of fighting sleeplessness, she advises treating oneself kindly, recognizing the difficulty.
Kobil recommends creating a simple playbook with comforting activities for awake moments during the night. Just as you would comfort a child who’s afraid, she suggests being gentle with yourself, gradually changing the perception of wakefulness into a positive experience.
This article is republished from HealthyDebate under a Creative Commons license. Read the original article.
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Progesterone Menopausal HRT: When, Why, And How To Benefit
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Progesterone doesn’t get talked about as much as other sex hormones, so what’s its deal? Dr. Heather Hirsch explains:
Menopausal progesterone
Dr. Hirsch considers progesterone essential for menopausal women who are taking estrogen and have an intact uterus, to keep conditions at bay such as endometriosis or even uterine cancer.
However, she advises it is not critical in those without a uterus, unless there was a previous case of one of the above conditions.
10almonds addition: on the other hand, progesterone can still be beneficial from a metabolic and body composition standpoint, so do speak with your endocrinologist about it.
As an extra bonus: while not soporific (it won’t make you sleepy), taking progesterone at night will improve the quality of your sleep once you do sleep, so that’s a worthwhile thing for many!
Dr. Hirsch also discusses the merits of continuous vs cyclic use; continuous maintains the above sleep benefits, for example, while cyclic use can help stabilize menstrual patterns in late perimenopause and early menopause.
For more on these things, plus discussion of different types of progesterone, enjoy:
Click Here If The Embedded Video Doesn’t Load Automatically!
Want to learn more?
You might also like to read:
- What Does “Balance Your Hormones” Even Mean?
- What You Should Have Been Told About The Menopause Beforehand
- HRT: Bioidentical vs Animal – A Tale Of Two Approaches
Take care!
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Unleashing My Superpowers – by Dr. Patience Mpofu
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Dr. Patience Mpofu is on a mission to provide women and girls with the inside-information, knowledge, resources, and strategies to break through the glass ceiling. She writes from her experience in STEM, but her lessons are applicable in any field.
Her advices range from the internal (how to deal with imposter syndrome) to the external (how to overcome cultural biases); she also explains and illustrates the importance of both role models and mentors.
While a lot of the book is half instruction manual, half memoir of her incredible life and career (to illustrate her points), and is well-worth reading—and/or perhaps worth gifting to a girl you know with ambitions in STEM?
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