This is a great overview of prostate cancer treatments (and a bit about breast) - Chris Woollams of CancerActive interviewing NHS oncologist Robert Thomas; looking at treatment protocols, hormones, lifestyle and much more. I found it a great reminder but also some stuff I didn't know.
Thursday, 20 April 2023
Thursday, 13 April 2023
Understanding blood tests
Of course it depends lots on the type of cancer you have, but I heard recently Jo Gamble, Functional Medicine practitioner and nutritionist say if you were going for one test then go for a genomics test as that gives a great starting point. More of that in another blog post.
This blog is a bit of a cheat as it is not my blog but rather it links to Chris Woollams' Canceractive website - there in a blog from earlier this month, he does a great simple guide of those blood tests we get from our GPs - sometimes it can be a challenge to get these tests but they can often give a great overview of our health. See it at:
However we should remember blood tests are only part of the picture - and it can be dangerous to try and self-diagnose from results - talk to your health team. Nevertheless it can be useful to do your own research - see for example my previous blog on low white blood cells: https://myunexpectedguide.blogspot.com/2019/09/low-white-blood-cell-count.html
Monday, 10 April 2023
Ultra-processed foods recommended by NHS App
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| Radiotherapy, Cheltenham Hospital |
How much do we eat?
Most of the food in the UK is Ultra-Processed food (UPFs) making up 65% of children diets. Dr Kiara Chang, who worked research at Imperial College, London, said to The Independent newspaper in February this year (i), that the average person in the UK relies on UPFs for more than half of their daily energy intake, with poorer people more vulnerable to taking the cheap and unhealthy option.
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| Apologies but can't find reference for this |
Health risks
These foods have little or no nutritional value and their industrial processing and chemical ingredients often make them easier to eat without filling us up - so we crave more. We know UPFs carry serious health risks including heart, liver and kidney disease, depression, early death, obesity and cancer. Over 18,000 reports come up in Pubmed when searching for ultra-processed foods.
In terms of cancer the findings in the Imperial College research is that for every 10 per cent increase in ultra-processed food in a person’s diet, there was a 2 per cent increased risk of cancer overall, and a 19 per cent increased risk for ovarian cancer specifically. These links held true even after adjusting for factors that may alter the results, such as exercise, body mass index (BMI) and deprivation. Other cancers like colorectal are also linked to UPFs but interestingly the link is less clear with prostate cancer.
See Alliance for Natural Health’s article on UPFs health risks : https://www.anhinternational.org/2018/02/21/ultra-processed-food-dangers-need-cook-scratch/
Culture
Aggressively marketed UPFs have led to the development of a culture where UPFs are seen as acceptable and in some cases even healthy. We’ve also seen a shift to more vegan and other ‘healthy diets’ yet these are not always so healthy; processed vegan meals can be just as unhealthy with high fat, salt and sugar contents. There are now for example over 400 vegan cheeses on the market in the UK, some are great but many are packed with lots of unhealthy ingredients.
A 2019 study found over half of commonly eaten processed foods in the EU are too unhealthy to be marketed for consumption by kids (ii). And it seems to only be getting worse. In the States I read that Kraft Heinz are launching new prepackaged ultra-processed lunches as part of school lunch programs (iii).
Processed meats
Many of us will be aware of the controversy around red meats, bacon and processed meats. The WHO put them in the same carcinogen category as alcohol and tobacco despite being only a ‘probable’ carcinogen with the research linking it to thousands of deaths from colorectal cancer in the UK. Cancer Research UK also have a page warning us about the risks (iv).
Chris Woollams of CANCERactive writes about a study that was widely covered in the press, seemed to suggest these foods are not associated with cancer (v). It is not so straightforward as he shows. A new review of 25 studies last year involving nearly 2 million participants found ‘increased consumption of "total meat" and "processed meat" might be associated with a higher risk of prostate cancer’ (vi).
“Probable cause of cancer” means it is sensible to me to cut out processed meats or keep them to a minimum. It also seems important to go for organic, pasture-fed quality where possible. We can also keep an eye out for nitrites that can become cancer-causing chemicals when we eat them. Last year there were increased calls for alternatives to be used; certainly these are now available but it is still seems very hard to get organic nitrate free bacon (vii).
Update 24.8.24: Saw an interesting video by nutritionist Amanda King ND saying that eating bacon is OK and maybe even good re cancer!! 'We shouldn't be scared of nitrates and nitrites....indeed we want to boost those levels'. Elsewhere sh does write about the dangers of ultra processed foods but oh my this is so confusing, maybe the research doesn't take enough account of non-organic meat or the way it is cooked? See her video at: https://www.youtube.com/watch?v=1MHYdddMKMg
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| Time to get juicer out! |
‘Serving Up the Food Industry’s Markets Secrets’
This is the sub-title of a book by investigative food journalist, Joanna Blythman entitled ‘Swallow This’ in 2015. I’ve got several of her books so when I saw this in a charity shop soon after it was published I hesitated thinking I surely know most of the stuff that is going on.
Well I did buy it and the book blew me away - some of it no doubt is known to readers of this blog but I guess when it was all put together it made an impression on me. It also goes into how the chemical industry and food manufacturers are designing our food with enzymes, nanoparticles, protein isolates, cyclodextrins and more. Sadly this is the last book she has written although there are more recent articles in The Guardian by her.
To give a flavour of the book here are a some of the stories she tells:
- Vitamin tablets derived from petrol.
- Supermarkets ready meals coming from the same manufacturers with, for example, the same tomato sauce that can be used in pizza, chilli, lasagna, soup, bolognaise and more.
- Manufacturers doing away with the unpopular E numbers and replacing them with a ‘Clean Label’ policy. Examples include E number preservatives relabelled as ‘fermented corn syrup’ which sounds more healthy or using the word ‘Extract’. Rosemary extract, for example is the same as E392 and has faced processing that deodorises (removes rosemary taste and smell) by using supercritical fluid-extraction or chemical solvents.
- Supermarket in-store bakeries that don’t have to give a complete list of ingredients (and don’t).
- ‘Fresh’ cut fruit sprayed in an acid solution to add 21 days to its shelf life.
- Commercial cooking oil is used for up to 12 days, kept ‘fresh’ by a cocktail of antifreeze and varnish. It doesn’t appear on the label of your chicken kiev because it’s classed as a processing aid rather than an additive.
- Processing to ensure pitta bread stays ‘fresh’ for six months.
- Food manufacturers use over 2,500 ‘approved flavouring substances’; 400 of these are under evaluation for safety testing that takes many years to complete. A typical strawberry flavouring in a milkshake uses around 50 chemicals while several chemicals are used to make up the taste of ‘aged’ or ‘mature’ cheeses.
- Stewing beef encased in plastic with gases to keep it looking ruby red.
- Adding water to meat products by tumbling minced meat in brine, then heat treating or cooking in plastic bags in steam, then this semi-liquid protein plus chemicals binds the meat pieces together to look like one joint.
- How colour cons us into thinking processed food tastes of something it doesn’t; when research showed certain colourings were strongly linked to hyperactivity in children the colourings were not banned. It was only after campaigns then the EU stepped in to insist products with those colourings must have a warning. Prominent independent food groups don’t accept that other E number colours (that are widely used) are safe.
- Other additions to our food include150 enzymes (more are being developed using genetic modification). They are so powerful that they are only needed in small amounts and don’t appear on labels as it is ‘assumed’ they are deactivated or used up in processing. Phospholipase, for example, that is used in bread comes from a pig’s pancreas. Andrew Whitley, an authority on artisan baking, observes ‘safety assurance has a short shelf life’.
- A chemical is often added to packaging like mayonnaise to ensure a slippery surface so it slides out.
NHS App
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| Cheltenham Hospital Radiology |
The government seems unable to take this issue seriously and continues to ignore the health impacts of these foods. Astonishingly the NHS Food scanner app promotes ultra-processed foods as healthy! The Soil Association found products encouraging unhealthy snacking, artificially sweetened beverages and even energy drinks awarded the UK government’s Good Choice badge and promoted as healthy swaps by its NHS Food Scanner App.
I guess I shouldn't be surprised when we know the NHS is unable to take food seriously with such poor nutrition from hospital meals and hospital shops selling hugely unhealthy foods.
This approach can only help the big food corporations - friends of those in Government - to continue to make massive profits at the expense of our children’s health.
The Soil Associations’ in their report ‘Ultra-processed foods - evidence review 2022’ outline the current situation: “In the past 12 months a torrent of new evidence has linked ultra-processed foods (UPFs) to adverse health and environmental outcomes. The evidence was already compelling. A 2020 review found 37 of 43 published papers had established a clear association between UPFs and poor health, while the first randomised control trial (RCT) in 2019 found a causal relationship with weight gain. This had prompted a policy response from national governments across the world, from Brazil to Canada to France, though not in the UK.”
You can read their reports plus a huge list of the evidence including the massive impact UPFs are having on the environment: https://www.soilassociation.org/causes-campaigns/ultra-processed-foods/taking-the-biscuit/
Take action
Join me in signing the Soil Association’s petition calling on Secretary of State for Health and Social Care, Steve Barclay, to:
• Remove the UK government’s Good Choice badge from ultra-processed products,
• Introduce dietary guidelines to address ultra-processed foods,
• Introduce a percentage reduction target to reduce ultra-processed food consumption to more healthy levels by 2030
• Talk to families about their experience of ultra-processed foods, working to ensure that healthy foods are more accessible and affordable
https://act.soilassociation.org/taking-the-biscuit
Update 17th April 23: Check out Green in Lords on this topic on Radio 4 news: https://nataliebennett.org/latest/radio-4s-today-in-parliament-covers-the-house-of-lords-ultraprocessed-food-debate
Notes
(i) https://www.independent.co.uk/news/health/ultra-processed-foods-list-cancer-risk-b2274166.html
(iv) https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/diet-and-cancer/does-eating-processed-and-red-meat-cause-cancer
(v) https://chriswoollamshealthwatch.com/blog/the-truth-about-red-meat-bacon-and-processed-meats/
(vi) https://pubmed.ncbi.nlm.nih.gov/35198587/
(vii) https://www.theguardian.com/food/2022/jul/08/nitrites-in-bacon-scientists-mps-call-for-uk-ban-cancer-fears
(iv) https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/diet-and-cancer/does-eating-processed-and-red-meat-cause-cancer
(v) https://chriswoollamshealthwatch.com/blog/the-truth-about-red-meat-bacon-and-processed-meats/
(vi) https://pubmed.ncbi.nlm.nih.gov/35198587/
(vii) https://www.theguardian.com/food/2022/jul/08/nitrites-in-bacon-scientists-mps-call-for-uk-ban-cancer-fears
Thursday, 6 April 2023
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.
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.
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
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