Cancer Care Reviews, Pathways and more

I’d not heard of Cancer Care Reviews until very recently - yet all of us with cancer are meant to have them. Hence this blog to find out more about them….this is my first attempt to capture some of the key issues and look at where we are going in Gloucestershire. 

Research from a while back showed that one in three cancer survivors experience moderate to severe unmet needs at the end of treatment, and for 60% of people, these needs have not improved six months after treatment. It is research like this that led to The National Cancer Survivorship Initiative (NCSI) being set up in 2008 to develop and test a number of key interventions that together are called the Recovery Package.

Evaluations consistently pointed out that implementing elements of the package requires a shift in culture away from dependence on professionals towards empowering patients. It is great that this is recognised but we have a long way to go.


What is a Recovery Package?

These are a series of interventions that are aimed at improving our quality of life during and after treatment for cancer - helping us to self-manage the impact cancer and treatment can have on our lives - see Macmillan's paper on it here: https://www.macmillan.org.uk/documents/aboutus/health_professionals/recoverypackage/recoverypackagesharinggoodpractice.pdf 

If you are not offered these types of support but feel any of them would be useful, you could ask your healthcare team if they can arrange them. The recovery package has four parts:

• Holistic Needs Assessment

• treatment summary

• health and wellbeing events

• cancer care review

They may not always have these names - and in my own treatment I have only come across the first of these:

1. Holistic Needs Assessment (HNA); this is an assessment where we answer questions about our needs and what is important to us. The questions will be about all areas of our life. For example the HNA looks at physical, practical, emotional, spiritual and social needs. Then based on our needs and a discussion with us, the team creates a care and support plan. This can include advice and information on lifestyle, self management, local support and a referral to a specialist service.

Apparently you can have the HNA at diagnosis, the end of treatment, or whenever your needs change. You can also ask to have an HNA when you feel you need it. The HNA ensures that your team spots your needs early and find ways of helping you in the best appropriate way.

In terms of the Care Plan I see that Macmillan also recommend people with cancer should have a co-developed personalised prehabilitation care plan (PPCP) as part of an overall care plan (i); “Individualised exercise, nutrition and psychological support, should be integral to the care of all people with a cancer diagnosis”. 

Just after diagnosis things are not always easy to absorb, remember or understand. However I don’t remember ever having a conversation with anyone about the HNA except a brief phone call. I do remember the tick box HNA form that I have a copy of plus a very sparse Care Plan that was sent through - but certainly there was no talk of Prehab. Indeed as I’ve noted before when I asked my oncologist about exercise and diet he said I was pretty fit and to just keep doing what I was doing - that was without any conversation about what I was doing! 

Self assessment as to whether for example we are doing enough exercise or the right nutrition seems a poor way to do it. We may well know what is needed but for me I hadn't appreciated that in addition to aerobic exercise I needed to doing strength-bearing. This is the time when folks are open to discussions to make changes that support is crucial. If, for example, it is judged that this is not the right time then there should be a way for health professionals to pick up on it at a later date.

I have spoken to a number of folks locally who similarly had one of these HNAs - some remember their conversation but no one I have spoken to was asked about exercise or diet. This seems a hugely wasted opportunity to let people know how they can support themselves and make a real difference to health outcomes. 

2. Treatment Summary; this is a written summary of our treatment for us to take away usually after treatment is completed. A copy is also sent to our GP so we both know what has happened and what to expect after treatment. The summary should include details about the cancer treatment we have had, any tests or investigations we might need, side effects or potential signs and symptoms we need to be aware of and contact details for our healthcare team, in case we or our GP need to contact them. 

I am told that we may find the treatment summary useful if we want to tell others about our care. For example when applying for travel insurance. I have no memory of this but maybe one of my visits covered this - anyhow I will go and request a copy in my next visit!

3. Health and Wellbeing Events; different health authorities provide varying levels of support. Gloucestershire have a small number of talks like on Prehab or specifically on treatments like radiation. These events usually take place in a hospital and last a few hours. Macmillan list a range of talks that some health authorities give;

• claiming benefits and other financial support

• getting back to work or education

• eating well and leading a healthy lifestyle

• the possible long-term consequences of treatment

• the emotional effects that cancer and its treatment may have, and where to seek help if you need it

• being aware of signs and symptoms that may mean the cancer has come back, and who to contact

• local services and opportunities – for example, support groups or local physical activity groups.

This looks more comprehensive than Gloucestershire’s offer - Macmillan do have lots of info on these topics so do call them free on 0808 808 00 00.

Example of Cancer Care Review

4. Cancer Care Reviews; a discussion with your GP or practice nurse. The Quality Outcomes Framework requires all GPs to carry out a Cancer Care Review within six months of receiving a confirmation of a patient receiving a cancer diagnosis. 

The aims of the discussion are to check whether you have any concerns or need any information or support. They are also used to tell you what to look out for, what to do and when you might need to contact your healthcare team for advice. Macmillan have a useful page about these Reviews for professionals: https://www.macmillan.org.uk/healthcare-professionals/cancer-pathways/prevention-and-diagnosis/cancer-care-review

Again I have no memory of any meeting called this but my GP was very supportive throughout my treatment and I guess we covered some of these issues. Indeed unlike many GPs that I hear about from others with cancer, my GP was prepared to raise and discuss issues like the impact of treatment on sex life.


After treatment

There is lots I could write about what happens when treatment is complete - and for many that time can be one of the hardest times as it can feel like support ends and others think you are back to 'normal' - but more of that in another blog. In brief there are various options that continue to involve your healthcare teams input. Some folks might continue to see their oncologist or other member of the team, while some may be discharged and only come back if their situation changes. In my case I am now being monitored every six months with a PSA test and a call from an oncology nurse. 


Cancer Pathways

The above gives a flavour of what we can request. This ‘support’ is part of a Cancer Pathway that aims to give us access to high-quality diagnosis, treatment and care. These pathways are developed to support healthcare professionals at the front line of cancer diagnosis and care. They often include easy to follow flowcharts to guide healthcare professionals deliver best practice diagnosis, treatment and support.

Prostate Cancer UK have an excellent few pages on their website that looks at diagnostic, treatment and support pathways (ii). They aim for example to achieve an early diagnosis in men at higher than average risk of the disease. Their Prostate cancer pathway is in the process of being updated.

These pathways are one of the areas that I think can make a difference to care. At the moment in Gloucestershire - and across the country - we do not have clear pathways that are followed by all our health teams. Indeed this is one of the reasons I joined the Gloucestershire Cancer Patient Reference group a couple of years ago. We need significant improvements. A blog on that Reference Group is for another time - the group has just merged and we are developing new terms of reference but if you live in Glos and are interested in joining the group do get in touch. I have hopes that it will now be a vehicle where more real co-production is possible and we can see some further improvements.

As a representative of the Patient Reference Group I have recently joined (as a volunteer) the staff group looking at Prehab in Glos for a series of meetings. It is a privilege to be part of their plans and passion to build improved services. Some key areas are improving but resources are still not being prioritised and we are a long way off from a quality service….the Prostate Pathway for example is just starting to be looked at and much work will be needed to get health teams on board. 

Very old leaflet!

However here in 2023 more patients should at least be hearing about the Prehab offer from the NHS - that includes the offer of support re exercise, nutrition and in some cases mental health support.

Notes

(i) https://cdn.macmillan.org.uk/dfsmedia/1a6f23537f7f4519bb0cf14c45b2a629/1637-source/ten-tips-prehabilitation-tcm9-355561?

(ii) https://prostatecanceruk.org/about-us/projects-and-policies/best-practice-pathway

Ghee - and fats revisited

One of the areas of nutrition I’ve struggled to understand is ‘fats’. In this blog I want to take a more in depth look at ghee. There is much that contradicts in the world of fats and cancer; do click on the ‘Fats’ tag of this blog to see some of my previous discussions on this issue. In particular one blog in June last year I wrote about dairy (i) and some of the studies that indicate a possible increased risk regarding prostate cancer. In other previous blogs I wrote about Coconut oil (ii), Omega 3 and oily fish (iii) and a recent blog on olive oil (iv).

Saturated fats

Ghee is considered high in saturated fats. I thought it worth revisiting this issue as it is said by some that prostate cancer is driven by fats. There is some evidence to support this (v). However saturated fats are perhaps not as bad as they have been seen by many since the 1950s - indeed since then they have got the blame for a number of cancers - and indeed for heart disease when Ancel Keys argued that saturated fat raised cholesterol levels and this caused heart disease. In fact saturated fat consumption fell during this time just as heart disease and cancers were on the rise. The picture is more complicated.

A great article by Meleni Aldridge that delves more deeply into this topic can be found at the Alliance for Natural Health: https://www.anhinternational.org/news/get-fat-happy/ In that article she exposes the myths that fats make us fat, cause heart disease and more. As we know fats are essential for human health - indeed three quarters of our brain is made up of fats. 

In another article, “The Oiling of America” by Sally Fallon (vi), she looks at the history and links the rise in brain diseases, emotional disorders and neurodegenerative disorders to the timeline from when the public was asked to drop animal fats and replace them with vegetable fats. It seems it is more important to be aware of the particular fats you are eating.

Fats and cancer

As I mentioned in a previous blog (vii), Dr Geo Espinosa wrote (viii): “There is no conclusive association between eating fat, including saturated fat and prostate cancer. With two possible exceptions: Too much Omega 6-fatty acids and trans – fatty acids. Omega 6 fats are good for you but only when it is in the balance with omega 3-fats. The omega-6 to omega-3 ratio in the standard American (heart attack) diet is 20 or 30:1, omega 6 to omega 3. The healthier ratio is 2 or 1:1, respectively.”

Meanwhile in a paper by Stephen Evans, entitled ‘Cancer Control – The New Protocol’ (ix) he concludes: “There is some evidence that diets high in animal fat and saturated fat increase prostate cancer risk. However, some studies have also shown no association, while others have implicated unsaturated fats [Note from Evans – when I looked in depth at the studies, the saturated fats list included, for example, ice cream and cheese spreads – both of which are either high in sugar or nitrates and trans-fats – now known to be cancer instigators. That is, the definition of saturated fats in the prostate research was quite naive.”

Evans goes onto write: “The problem is not saturated fat – which even protects against cancer in certain cases. In fact, even trans fats that occur naturally – in the milk and meat of cows and other grass-fed animals – are known to protect against cancer. The real problem is with artificial trans fats, and other types of artificial foods. What I believe we may conclude is that non-trans-fat is not implicated in cancer.”

Update 28.01.24: I just read an interesting study where they heated a number of common oils including extra virgin olive oil (EVOO) to 240°C and then held the oils at 180°C for 6 hours,. The concluded: “EVOO yielded low levels of (unhealthy) polar compounds and oxidative by-products (compared with other oils). EVOO’s fatty acid profile and natural antioxidant content allowed the oil to remain stable when heated (unlike oils with high levels of polyunsaturated fats [PUFAs] which degraded more readily).”

https://actascientific.com/ASNH/pdf/ASNH-02-0083.pdf

Ghee

I mentioned previously that it doesn’t make sense to have lots of butter but it seems it is not as bad as some thought - especially if organic and grass-fed. However it is clear that better still is ghee. The beta-casein is removed, leaving the clarified butter fat with it’s fat-soluble vitamins. In a Western diet we are often deficient in vitamins A, D, and K2 - ghee is a great way to get those vitamins. Ghee has a modest amount of omega 3 and it's ratio of Omega 3 to 6 (roughly 1:3 or 1:2.5) is better than most vegetable oils including olive. It also has a high smoking point - unlike many other oils/fats it doesn’t have low oxidation levels that can create free radicals when heated - it is these free radicals that can lead to disease. So ghee is a great option to use when cooking and baking.

Ayurvedic doctor, Sam Watts sings the wonders of ghee (x). In terms of anti-cancer benefits he writes: “Given the ever-increasing prevalence of cancer around the world, we should all be adopting, as a key self-care priority, daily approaches into our lives that possess proven cancer inhibiting benefits. And ghee fulfils this criteria in a very significant way. For example, clinical research now shows that ghee is able to modify the functioning of our genes in a way that helps to prevent the excessive cell growth that is the root cause of all cancer formation whilst also helping to induce cell death (a process called apoptosis) in pre-cancerous and fully cancerous cells. Furthermore, ghee excels in its ability to detoxify and remove cancer promoting carcinogenic toxins and chemicals from the cells of the body which is a crucial weapon in our cancer preventing arsenal.”

Making ghee

There are a number of recipe variations but this one worked for a friend of mine. So far we have just bought ghee but this has inspired me to try making it….melt at least 250g of butter in a small sturdy saucepan over a low heat. You can use more butter but for the first time start with a smaller amount.

Within five to ten minutes, you start to see the milk solids separate from the melted butterfat and the water will evaporate. At this point you can turn up the heat to a medium so that the milk solids will continue to brown and the water evaporate. A layer of milk solids will form some white foam on the top which some recipes say you can scoop off.

Continue to cook for a further five to ten minutes until the milk solids have all gone brown. There is a great smell of toffee!

Turn the heat off and leave the pan for a few minutes to cool slightly.

Now strain the butter through a muslin (that lies in a metal sieve) into a heatproof bowl. This is now butterfat - the ghee - or ‘liquid gold’ as some have named it. Avoid getting any milk solids mixed in - you can leave some of the browned milk solids in the pan. 

Leave for some minutes to get the lasts drip into the bowl, then transfer to a jar. 

The water and milk solids have been removed so the ghee should last for three months at room temperature and up to one year refrigerated. In a freezer it will last much longer.

Finally…

In short, in terms of fats, I am left avoiding dairy but occasionally having a small amount of butter - and also an occasional goat or sheep yoghurt or cheese, a small amount of coconut oil, a fair bit of olive oil, some oily fish and an omega 3 supplement - and off course pasture-fed organic ghee.

Like with many approaches to cancer there is a need to continue to review and update as new evidence comes to light or something resonates. As always these blogs are my thoughts - I welcome comments, corrections and more - we still need further research to untangle all this about fats and prostate cancer. 


Notes

(i) https://myunexpectedguide.blogspot.com/2022/06/scary-dairy.html

(ii) https://myunexpectedguide.blogspot.com/2020/10/a-look-at-coconut-oil.html

(iii) https://myunexpectedguide.blogspot.com/2019/07/what-now-after-mineral-and-fatty-acids.html and https://myunexpectedguide.blogspot.com/2019/07/another-look-at-my-ethythrocyte.html
(iv) https://myunexpectedguide.blogspot.com/2023/01/olive-oil-and-cancer-im-still-learning.html
(v) https://pubmed.ncbi.nlm.nih.gov/14713748/ 
(vi) https://www.westonaprice.org/health-topics/the-oiling-of-america/
(vii) https://myunexpectedguide.blogspot.com/2019/02/the-mystery-of-fats-and-oils.html
(viii) http://drgeo.com/dietary-fat-does-not-increase-prostate-cancer-risk/ and https://pubmed.ncbi.nlm.nih.gov/18408140/
(ix) Cancer Control – The New Protocol (CTP9.6) Basic Principles, Strategies, and Interventions Steven Evans Therapeutics Research Institute Omaha, NE 68131 June, 2013
(x) https://www.mind-body-medical.co.uk/news/the-lowdown-on-ghee

Henrietta Lacks finally gets a statue

My photo of exhibition 2019

Well until I had cancer I had never heard of Henrietta Lacks. She was an African-American woman whose cervical cancer cells transformed medical research. These cells were cultivated without permission or knowledge of Lacks or her family and led to many lives being saved.

The cells were given the name HeLa cell line – so called because of the initial two letters of her first and last names. The cells have been used for cancer but also for polio, Parkinsons, Aids and gene mapping.

Lacks was treated in 1951 at Baltimore’s Johns Hopkins hospital, which at the time was one of the only medical facilities accepting Black patients. She died within months, at age 31. But scientists found that her cells had a genetic mutation and were multiplying daily outside her body and lasting longer than other samples. They effectively became the first human cells to be successfully cloned.

In October this year a bronze statue of her will be put up in Roanoke, her Virginia home town - replacing one of the Confederate General Robert E Lee. The plaza where it will be situated has already been named after her.

Ron Lacks, whose father, Lawrence Lacks, is Henrietta’s oldest and only living child is quoted in The Guardian as saying: “This historical moment, occasion, has been a long time coming.” While many in the Black Lives Matter movement have hailed this as an important step.

The image is of Lacks and a glass vial handblown by Jochen Holz entitled 'Remembering Henrietta Lacks'. The vial contains some of her cells with permission from her family. I was fortunate to see this in a 2019 exhibition art the Wellcome Institute - see also here my blog on the Jo Spence exhibition there.

This whole story certainly raises big questions about consent and more. It is common practice today for tissue samples to be used for research, but institutions now have standards for getting consent. 

Giving the cell line part of Lacks' name was also done without permission breaching her confidentiality - indeed for decades doctors and scientists have revealed confidential information about her medical records. Worse still the Lacks’ family couldn’t even afford health care, and were not benefitting from the research. Eventually, the Lacks family have been given some control over how the cultures are used. Yet, they still get no financial benefit, even though samples are being sold around the world.

Henrietta Lacks has been dubbed the 'Mother of Modern Medicine' and considered as one of the most powerful symbols of informed consent. 

For those interested in learning more there is a 2010 bestselling book and a movie each named 'The Immortal Life of Henrietta Lacks' told her story.

Olive Oil and Cancer; I'm still learning!

Oh my I knew olive oil had certain properties that meant it was good to have, but I hadn't looked very far into it....it was a Chris Wark video that gave me the impetus to learn more. It seems olive oil is full of many good things but one in particular is increasingly being talked about in terms of cancer.

The phenolic antioxidant, oleocanthal, which is made when olives are crushed to make olive oil, has been found to kill cancer cells. It seems that it can damage a cell's lysosomes, which are where cells dispose of waste. Cancer cells usually have larger and more numerous lysosomes, making them more vulnerable to oleocanthal than other cells - the good news is that oleocanthal does not damage healthy cells. This research from 2015 was performed on breast, pancreatic, and prostate tumor cells (i).

 

Since then oleocanthal has also been found to shrink tumors in mice (ii). In particular I liked a Louisiana study that "concluded that oleocanthal can potentially inhibit the growth and relapse of mCRPC in mice by suppressing the enzyme SMYD2 and its downstream substrates - which play a critical role in the progression of this aggressive prostate cancer type". The dose was very high but the researchers concluded that oleocanthal could be an appropriate dietary supplement for immediate use by prostate cancer patients (and survivors) either individually or in combination with standard prostate cancer therapies (iii).

It should be noted that there has also been some evidence from mice studies that high olive oil intake can aggravate cervical cancer (iv). Overall a systematic review of  45 studies in 2022 found that "Olive oil consumption seems to exert beneficial actions in terms of cancer prevention."(v). However this study doesn't seem to look at particular olive oils.

Apparently oleocanthal is also has other impacts - not least being as potent as ibuprofen (viii)!

Quality

Olive oil fraud is well documented. The figures are completely astounding - see this study in California that found over 70% failing to reach standards (vi). Some researchers have claimed up to 80% of extra virgin olive oils sold in supermarkets are counterfeit. Some are labelled as extra virgin when they are not, some have been stored too long and mislabelled, some are diluted with cheap vegetable oils or lower grade chemically refined olive oil.

Chris Wark in a blog quotes olive expert Tom Mueller in his book, 'Extra Virginity': “Italian investigators have found hydrocarbon residues, pesticides, and other contaminants in fake oils, and pomace oil, a common adulterant, sometimes contains mineral oil as well as PAHs, proven carcinogens that can also damage DNA and the immune system.”

Taste test

These oils don't have the benefits that oleocanthal has been shown to produce. Dr Goren who is in the interview with Chris Wark shares in the video and on her website how to check out your oils - see here plus her video (vii). She writes that "real olive oil will have a bright flavour with a peppery aftertaste" - and that you want oils that are "less than two years old" (no harvest date is a 'red flag'), are harvested earlier in the season of possible, have third party testing of their oils on their company website (acidity should be less than 0.7%, lower is better) plus are not in large containers (avoid plastic) as once opened should 

be eaten within two months. 

To test she says poor a little into a small glass and taste straight. If it has the Oleocanthal then it will have a taste that is "slightly peppery" and has a "somewhat stingy sensation in the back of our palate and top of our throat". The highest quality Extra Virgin Olive Oil (EVOO), often have a higher oleocanthal content; this will have a real “bite” and often even induce a slight cough when tasted like that. 

However Dr Goren says that any authentic, fresh (unexpired) extra virgin olive oil, should have at least a small amount of oleocanthal and a noticeable “sting” when you taste the pure oil. Certainly the research indicates that EVOOs also are the best source of polyphenols amongst olive oils.

Dr Goren has, since her amazing research, gone on to sell quality olive oils. In fact it is the same brand that Jane McLelland recommends in her course 'How to Starve Cancer' which I have nearly completed. The price is pretty prohibitive for many even when seeing it as a medical supplement. 

How much?

Dr Goren says the research is not sufficient to give good advice but studies suggest two to three tablespoons of olive oil per day is great - but if it is an oil with higher oleocanthal. It is interesting to learn that in Greece it seems doctors can prescribe high phenolic olive oils for folks instead of statins.

Finally I'm not for a moment saying that 'olive oil cures cancer' - but see that Dr Goren's research is exciting. We need more! I'll also be looking out for that peppery taste and being a bit more choosy when it comes to oils!

Watch the Chris Wark interview with Dr Limor Goren on olive oil and oleocanthal to learn more at: https://www.chrisbeatcancer.com/dr-limor-goren-on-the-anticancer-effects-of-olive-oil-and-oleocanthal/

And see more of Dr Goren in this interview: https://youtu.be/18pN5l5QT2E

Greek physician Hippocrates, known as the father of medicine, is said to have referred to olive oil as ‘the great therapeutic.’

Notes:

(i) https://www.tandfonline.com/doi/full/10.1080/23723556.2015.1006077#abstract

(ii) https://pubmed.ncbi.nlm.nih.gov/31412041/

(iii) https://www.mdpi.com/2072-6694/14/14/3542/htm

(iv) https://pubmed.ncbi.nlm.nih.gov/30922331/

(v) https://pubmed.ncbi.nlm.nih.gov/35015763/

(vi) http://vrisi36.com/wp-content/uploads/UCDavis-Report.pdf

(vii) https://kyoord.com/blogs/learn/olive-oil-fraud-is-real-heres-how-to-spot-fake-olive-oil

(vii) https://pubmed.ncbi.nlm.nih.gov/16136122/

Breath and cancer

There are thousands of years of ancient wisdom about the importance of breath and breathing, yet it is only more recently that we are seeing a resurgence in interest and study. 

 

Every day we take in 20,000 to 25,000 breaths, and most of us are shallow breathers. If we can improve this it seems that we have the chance to transform our physical, mental and spiritual health. Research is showing us that making slight changes to the way we inhale and exhale can improve athletic performance, rejuvenate internal organs, put a stop to snoring, improve autoimmune diseases and much more.

 

I have, in the past, done various breathing exercises in yoga and other sessions but it was only in 2018 I started to wake up to the potential of breath work. It was at the extraordinary Trew Fields Festival; ‘the UK’s first holistic health and cancer awareness Festival’. There, I signed up for a two minute ice bath with a team who prepared us for the bath with a particular way of breathing plus a series of other breath workshops.

 

You can see my film of the Festival 2018 here and 2019 here. Sadly Covid meant that the Festival hasn’t been able to continue. However the founder, Sophie Trew has gone on to specialise in breath work alongside her coaching. Her first experiences of breath work she says were ‘game changing’ and led (with other things) to her saying goodbye to her asthma. On her website (see here) she has details of the sessions she is offering and also this: 

 

“The way you breathe affects every system and function in your body. Improper breathing and low levels of oxygen are a contributor to poor health. Shallow breathing increases stress and anxiety levels, affects the immune system, digestive health, sleep and the ability to detoxify amongst other things. By changing the way you breathe you can change the way you live, how you feel, your energy levels and stress levels. As a therapy, Breathwork brings in the mind, body and spirit.”

There is a growing body of evidence showing the benefits of Meditation and a key component to that is breathing. However it seems the breath work itself without meditation also has benefits.

Sophie Trew last month shared her learning and practice of breath work with Robin Daly, the founder and chair of the integrative cancer care charity, Yes to Life, in one of his weekly radio shows (listen here). At one point she talks about men who have challenges with meditation and how breath work can give us something to focus on. I do agree in terms of myself! I’ve found the limited amount of breath work I’ve done has been much easier to get along with than meditation. 

 

Cancer

 

No one I’ve read is making claims that changing your breath will cure cancer - indeed breathing doesn’t even get a mention in most all my growing collection of ‘cancer’ books. However many argue that cancers develop and thrive in environments low in oxygen - hence hyperbaric oxygen (see here)  and exercise (see here) can play key roles in treatment. 

 

It was Nobel Award winning Otto Warburg (1931) who was among the first to identify the role of oxygen. He wrote: “Cancer, above all other diseases, has countless secondary causes. But, even for cancer, there is only one prime cause. Summarized in a few words, the prime cause of cancer is the replacement of the respiration of oxygen in normal body cells by a fermentation of sugar.”

 

This view fell out of favour but is increasingly being revisited. It also seems to make sense to me that if we can improve our breathing then that can only help improve our health.

 

One of those that does mention ‘proper breathing’ is Dr Keith Block, one of the greatest pioneers of integrative oncology. In his ground breaking book ‘Life Over Cancer’ (2009) he says most of us are “shallow ‘chest breathers’, taking small, frequent breaths that fill only the top of the lungs.” He suggests one of the ways to learn is through Pilates saying that breathing is not something you practice at certain periods but “should become second nature, something you do while walking, reading, driving, shopping…living!”

 

The role of breath work

 

One of the books that has opened my eyes more to the importance of breath is ‘Breath: The New Science of a Lost Art’ by James Nestor. It was shortlisted for ‘The Royal Society Insight Investment Science Book Prize 2021’. The book gives us a wonderful introduction to some of the techniques and research and he quotes researchers saying “The missing pillar in health is breath.”

 

I very much enjoyed the book but would have liked it to have taken a more skeptical approach to some aspects. For example, when he talked about the good health of hunter-gatherers being due to better breathing, I started thinking that surely they are also fitter and eat less sugar! Anyhow my criticisms were largely minor.

 

Shut your mouth

 

In the book Nestor claims that 90% of us breathe incorrectly through our mouths instead of our noses. Apparently unlike the mouth, the nose cleans, heats and moistens air before it enters the body. A big reason for this is related to our diets. The soft processed foods we eat today have led in the last 300 years to facial bones and jaws be underworked, smaller and stunted in development. This underdevelopment he argues had led to the smaller, cramped airways that can lead to, for example, sleep apnea, which in turn correlates with heart disease, diabetes and chronic insomnia.

In the book Nestor blocks his own nostrils for 10 days to highlight how bad it can be to breathe through the mouth. The results are surprisingly shocking. 

 

Sleep tape

I am unsure how much I breathe through the nose at night but am aware that at times I do. So inspired by the book I’m giving blocking the mouth off at nights a try for three or four weeks. Basically any of those hypoallergenic surgical tapes will do to tape the mouth. You can also get ‘sleep tape’ that I found was less irritating in the night, but having said that I was surprised that the tape didn’t really interfere at all with my sleep. However it does interfere with any late night conversations!

 In the Nestor book Dr Mark Burhenne is noted as studying the links between mouth-breathing and sleep for decades. His research indicate it contributes to peridontal disease, bad breath, snoring, sleep apnea and was more damaging than sugar in terms of cavities. He argues that nose breathing is key to improving circulation and delivering oxygen to cells. 

 

Different approaches

 

There are so many approaches to breath work and like much of healing it is individual. Nestor outlines many of the key ones, two of which I cover below;

 

Wim Hof

 

One of the techniques that has become increasingly popular has been promoted by the extraordinary Dutch guy, Wim Hof. He became popular for running in the Arctic Circle and breaking 26 world records. 

 

Hof was also key to a study at a Dutch University where he was injected with an E. coli endotoxin. This is a safer way of provoking a bacterial immune response than using live bacteria. In a typical case the injection causes massive pro-inflammatory cytokines and flu-like symptoms. However when Hof was injected he produced 50% less cytokines, a large anti-inflammatory response and few flu symptoms. Hof was later able to train 12 volunteers in his meditation and breathing techniques, then have them injected. These volunteers showed similar responses to Hof’s experience and quite unlike the Control group.

Hof’s approach is based on Tummo, a method of breathing, meaning “inner fire,” that was developed by Tibetan Buddhists a thousand years ago. Its practitioners could survive under freezing conditions in the Himalayas in thin clothing. It is not gentle breath work but rather heavy and hard. Wim takes a three-pronged approach with the cold therapy, breathing and the commitment to stick with the approach. It was this technique that we were taught before going into the ice bath at Trew Fields and also inspired me to have daily cold showers (see more on cold showers here).

I have returned to this breathing several times for months but not managed to integrate it into my protocol properly. It is not comfortable as it is pushing us into a position of stress. However some of the results seem extraordinary. You can find out more at: https://www.wimhofmethod.com

Resonant (Coherent) Breathing

This is perhaps one of the most basic, yet powerful calming practices that puts the heart, circulation and lungs into a state of coherence so that the body can work at it’s peak condition. Indeed such breathing ‘hacks’ into the autonomic nervous system. Breathing slowly, for example, relaxes us into a greater parasympathetic state and reduces sympathetic activity; in some cases going a way to removing the effects of ‘toxic stress.

There is a lot of research into the role inflammation plays in ill-health, particularly in ageing,cardiovascular disease, diabetes II, rheumatoid arthritis, Alzheimer’s, and some cancers. It is the vagus nerve that plays a major role in controlling inflammation; what is so exciting is that we stimulate our vagus nerves when we practice breathing techniques. Breathing can reduce inflammation.

The ‘Resonant’ breath work is basically inhaling softly for 5.5 seconds, expanding the belly as it fills the bottom of the lungs. Then without pausing exhale softly for 5.5 seconds, bringing in the belly as the lungs empty. Repeat ten times or more.

It was fascinating to learn in Nestor’s book that the “Om” hymn of Jainism, the rosary of Catholicism, the shamanic hymn used in Kundalini yoga, and prayers from Japan to Hawaii and China all use the the same amount of breath ie between 5.5 and six seconds.

Giving it a go

Over the last months particularly, I have become very aware at times when I am breathing through the mouth. I am able to correct this and return to nose breathing. I am also doing the Resonant (Coherent) Breathing daily.

I also plan to learn more and am hoping to return to a more regular practice of yoga in coming weeks. Sophie Trew recommends Stuart Sandeman’s book that I have already ordered: “Breathe In, Breathe Out; Restore Your Health, Reset Your Mind and Find Happiness Through Breathwork.”

This blog has been submitted to Yes to Life but you can read it here first! I've been meaning to do something on this topic for a while - even started writing before Christmas - however it was Robin Daly's radio show with Sophie Trew prompted me to finish it. 

Prostate Cancer Registry - coming very soon

In 2021 Prostate Cancer Research began work on developing the first-of-its-kind prostate cancer registry in the UK. As I've noted in this blog earlier it seems extraordinary that this sort of research has not been going on for years....how can we possibly fully understand treatments and their efficacy without collecting this data.

At last it is coming - all credit to Prostate Cancer Research - they write: "We believe that a prostate cancer registry will revolutionise prostate cancer diagnosis, treatment and care by putting real people at the centre of research. It will bring together personal experience with clinical records in a safe and secure way with the potential to transform future research and connect patients with personalised medicines of the future." 

What is great is that they are including data like lifestyle and complimentary approaches to cancer as well as conventional - plus putting patients at the heart of it all. It sounds like in international circles this approach is pretty groundbreaking.

You can Pledge your support (already over 3,000 people have) at: https://www.prostate-cancer-research.org.uk/pledge/

Hear more in their Webinar that I caught earlier this month: https://www.prostate-cancer-research.org.uk/registry-update/

 

Shared Decision Making?

I just joined a Webinar on Shared Decision Making with the Patients Association earlier this morning - it was recorded so I think it will be available to watch and there are various downloadable resources. No mention of Integrative Care but I guess the more shared decision making, the more opportunities there will be, at least amongst those patients who have come across Integrative medicine?

We so need more of this as reserach shows one in seven people have post decision regret! I think that was mostly surgery but I've certainly come across quite a number of people who would have liked to understood better their choices. We also know from Kelly Turner's research (and others) that having more control over our health is good for our health. In some ways it seems extraordinary that we are even having this conversation!

There was a Citizen’s Jury in 2019 with NHS Scotland that looked at shared decisions -  this has led to a number of campaigns to boost shared decision making. A badge was created for clinicians to show their support - apparently very positive feedback from patients.

One of the resources that has been created is the 'Our Health - Our Knowledge' - a short web course designed to help people who are thinking about choices in healthcare. That includes patients, family members, carers, healthcare students, healthcare professionals, and policy makers. Patients are expected to be offered choices in treatments. See: https://www.ourhealthourknowledge.org

This Patients Association blog with online resources has a suggestion for Patient Reference Groups to have a look at this - I've already copied to our Gloucestershire Group: https://www.patients-association.org.uk/blog/our-health-our-knowledge-online-resource-for-patients-launches 

You can join other Patients Association webinars this week; 'Patient Partnership Week': www.patients-association.org.uk/Event/join-us-for-a-week-of-patient-partnership

To finish I note that this blog has been rather slow of late - partly have been busy with the charity Yes to Life and partly just life....I have at leats a hundred blogs in my head so hope to find some time for at least a few of those! In the meantime do check out Yers to Life's blogs at: https://yestolife.org.uk/blog/