Sunday, 18 November 2018

Meeting Megan




In this film made by Megan Bendell, she talks about her Documentary Photography projects. One of these was her highly intimate 'Oh, Mama'; a photographic documentation of terminal cancer and her families' positivity and support throughout. The pictures are very moving and capture love, grief and so much more. 

I heard about Megan through a friend in the local cancer support group and readily signed up to be one of the subjects of her third year University project. This is an extension of the ‘Oh Mama’ project looking at people living with cancer and their supporters - capturing images but also something of their story. She arrived at our house and we didn’t stop talking. I loved her insights into health, cancer and life, but also her professionalism and sensitivity when we got down to the photos. 

I felt more people should hear about her amazing work so asked if she might capture a few words on video - hence the film. Megan is currently based in Cheltenham so I’m hoping we might be able to see more of her work - and of course the project when it is finished later this year. I reckon she is a Documentary Photographer to look out for! See more about Megan at: https://www.meganbendall.com/oh-mama

Monday, 12 November 2018

Exercise; what I didn't know

Pic by Jo Lawrance
I thought I was pretty fit before my diagnosis, but since then my eyes have been opened..... 


I think one of the many things that surprised me following my diagnosis, was the failure of doctors to talk about factors like diet and exercise and their impact on cancer. Not one of the consultants or doctors in Gloucestershire or Germany that I met, mentioned exercise. To be fair, the follow up with nurses after diagnosis did have a tick box exercise regarding any ‘concerns’ that included exercise, plus I was given a thick pack of leaflets, one of which mentioned exercise - but, hey, I thought I was fit.


I had heard that ‘rebounding’ was the best exercise for cancer and soon after diagnosis I got myself onto a mini-trampoline for ten minutes every morning. I had also seen the UK Government’s chart (iv) on what exercise we need to do - see graphic. So I thought, that rebounding plus walks in the week, would be enough and therefore didn’t tick ‘exercise’ as a concern on the nurses ‘Needs Assessment’ form.

I was wrong. Sadly this is a similar story about awareness regarding exercise, to nearly everyone I have spoken to regarding their cancer diagnosis. For many exercise wasn’t mentioned and if it was, the level of importance attached to it seemed small. This is, no doubt, a reflection on our society where so many of us are not exercising sufficiently for optimum health.

Since those early days of diagnosis and treatment I’ve looked more deeply at exercise. It is clear, and no surprise to hear, that those exercising reduce the likelihood of many illnesses including cancer. For example the BMJ in April last year showed bicycling to work was associated with a 45% reduced risk of dying from cancer (i); this is about folk hitting the target of moderate to vigorous aerobic exercise each day. Exercise can also reverse many years of damage caused by sedentary lifestyles.

But what of those of us with cancer?  

 
Here there is also plenty of compelling evidence that exercise is great for us. See for example:

- in 2014 a study of 4,623 Swedish men with localised prostate cancer found that those who walked or cycled for at least 20 minutes each day had a 39% lower risk of dying from prostate cancer and a 30% lower risk of dying from any other cause compared to the less active men (ii).
 
- in 2007  a study of 1,490 women with early stage breast cancer found that those who exercised, like walking for 30 minutes each day and ate more than five servings of vegetables and fruit per day, had a whopping half the recurrence rate after nine years compared to those who didn’t (iii).

This is the sort of research that I would like to have been pointed to by doctors; exercise can make a big difference. 

So why did things change for me? At a Cotswold Prostate Cancer Support Group meeting I heard about the Next Steps programme being trialled in Gloucestershire….. 

Macmillan Next Steps Cancer Rehabilitation


After a self-referral I was able to join the exercise group of the Gloucestershire Next Steps programme (v) - it is an NHS specialist cancer rehabilitation service that has since won an Award for Excellence in Patient Empowerment. It started for me with a one-to-one session then there were six hour long sessions at GL1 in Gloucester with physiotherapists. What was hugely useful for me was understanding exercise and where and when to push a wee bit harder. On their advice I purchased a £12 heart monitor that showed my rebounding at home was great, but actually I was not working up a sweat, nor really being aerobic. Without the support of the Next Steps team I would probably think I was doing the exercise I needed and was doing OK. In fact all the team were wonderful and supportive.

Of course now knowing that exercise is important can come with it’s own challenges; I am now worried that I am not doing enough!

Next Steps BORG Scale to help exercise safely
It seems strange to have got to my age and not understand this, but I am not really one for gyms or measuring stuff. Well, things have changed in terms of exercise and I have now come to the end of my six weeks of sessions with Next Steps. I have significantly increased the rebounding. I’m also starting to understand the differences between health bounces for the lymphatic system, the strength bounce and aerobic bouncing. My improved strength and fitness showed in tests at the end of the last session.

I have also looked at increasing walking; parking the car furthest away in a car park and using stairs instead of a lift. At work I’ve even managed several walking meetings as opposed to sitting down; this has left me even more energised for the next bit of work. 

I suppose it is obvious, when I think about it, that health and fitness do not necessarily go together. However I was startled to read that the average elite athlete dies by age 67, which is at least nine years before the average man or woman. Extreme exercise is not good for us. I also read that this year a study of long distance cyclists over 60 had the same level of T-cells in their blood as people in their 20s (vi). It is about getting the right balance; not over exercising or like me earlier this year under-exercising.

I still have lots to learn and also still need to build exercise more sustainably into my daily routines, but I am doing good. I’m also in touch with several others from the Next Steps sessions and delighted to hear that they are also building exercise into their routines; one now goes to the gym daily another has taken up cycling again.

I’ll end this latest blog ramble with all good wishes to others who are also embarking on this part of their healing. I hope to return to this topic with more info about Next Steps as the team have said they would be happy for me to interview them at some point. I should also state the obvious that this blog is not about advising what exercise anyone should take, as there are so many factors. Lastly here are a couple of links on rebounding:

Chris Wark’s blog and video on rebounding at: https://www.chrisbeatcancer.com/rebounding/

And I have used the first 10 minutes of this video as my warm up rebound routine: https://youtu.be/YgeSuV3JczY 

Notes

(i) Association between active commuting and incident cardiovascular disease, cancer, and mortality
https://www.bmj.com/content/357/bmj.j1456

(ii) Physical Activity and Survival among Men Diagnosed with Prostate Cancer: http://cebp.aacrjournals.org/content/24/1/57

(iii) Greater Survival After Breast Cancer in Physically Active Women With High Vegetable-Fruit Intake Regardless of Obesity: http://ascopubs.org/doi/10.1200/JCO.2006.08.6819



(vi) Researchers at the University of Birmingham and King’s College London have found that staying active keeps the body young and healthy: https://www.birmingham.ac.uk/news/latest/2018/03/regular-exercise-slows-down-ageing.aspx

Thursday, 8 November 2018

Time for a Sacred Pause

You will no doubt have come across human doings versus human beings. Well, like many of us, I am so much in the doing, so many jobs ’that need to be done' that I rarely just sit and be.….although there are times I get closer to the being….sometimes when I dig the allotment or walk in nature I find I’m in the most beautiful space of being. But hey how can there be more of that - particularly in those busy, busy days?

Well recentlyI had a particularly full on week of doing and one evening sat down to answer more emails when in popped one from a work colleague. She had sent a link to a talk by Tara Brach about ‘The Sacred Pause’. I found it very worth the read. In the talk Tara looks at some of the motivations for always 'doing'; it has become a habit, something is wrong or missing - or how by doing we can at least get a sense of controlling the world. All that is me! And perhaps more so at times since the cancer diagnosis? 

Yet when we are lost in a 'trance of busyness', we can lose touch with our heart and connection with others.

So what can we do? 

Well, the talk shows how by intentionally pausing and creating space in our lives, 'we can rediscover the presence and mystery, beauty and love that make life meaningful’. Yes, yes and yes again. I can see how true this is. I know how true this is. So I have started to introduce more ‘sacred pauses' and wow can they be lovely. So readers close your eyes and take a moment.

Sunday, 21 October 2018

Should PSA test be standard for anyone over 50?

Photo taken from my film re the PSA testing event in Stroud
The UK’s prostate cancer statistics compare poorly in relation to those of its European neighbours. So what about the role of the PSA test?

What is the PSA test?

"The PSA test is a blood test that can help diagnose prostate problems, including prostate cancer. It is a blood test that measures the amount of prostate specific antigen (PSA) in your blood. PSA is a protein produced by normal cells in the prostate and also by prostate cancer cells. It’s normal to have a small amount of PSA in your blood, and the amount rises as you get older and your prostate gets bigger. A raised PSA level may suggest you have a problem with your prostate, but not necessarily cancer. You can have a PSA test at your GP surgery. You will need to discuss it with your GP first. At some GP surgeries you can discuss the test with a practice nurse, and they can do a test if you decide you want one." Prostate Cancer UK 

Statistics from Cancer Research here
If you are having the test it is important to understand the advantages and disadvantages - but certainly seems important to have the test if you have symptoms and in some cases even if you don’t have symptoms (i). See more at the Prostate Cancer UK website.

As many reading this will know, the PSA test is by no means ideal. Research shows that it can help diagnose people earlier and reduce the risk of death (ii) - but it is important to bear in mind that the raised PSA is only a sign that could mean an enlarged prostate, prostatitis and/or prostate cancer. It is also worth noting that a number of other factors can lead to raised PSA like a urine infection, vigorous exercise, ejaculation, medicines and more. Furthermore to confuse matters, some people with prostate cancer don’t have raised PSA levels. 1 in 7 men with a normal PSA level may have prostate cancer, and 1 in 50 men with a normal PSA may have a fast-growing prostate cancer.

What is the national position regarding PSA testing?


The national Prostate Cancer Risk Management Program run by NHS England gives advice to GPs and others about prostate cancer. The advice is; "The PSA test is available free to any well man aged 50 and over who requests it. GPs should not proactively raise the issue of PSA testing with asymptomatic men’"(iii). However this has led to GPs in Gloucestershire behaving very differently; some testing readily, others not. 

Prostate Cancer UK write: “It isn’t clear that screening with the PSA test would have more benefits than disadvantages. Some studies have found that screening with the PSA test could mean fewer men die from prostate cancer. But it would also mean that: many men would have a biopsy, which could cause side effects, a large number of men would be diagnosed with a slow-growing cancer that wouldn’t have caused any symptoms or shortened their life and a large number of these men would have treatment they didn’t need, which could cause side effects. Other studies have found that screening may not reduce the number of deaths from prostate cancer.”

Certainly my biopsy created additional problems and there are also those who have concerns about biopsy’s and their impact on our health - but that is for another blog.

What is Cotswold Prostate Cancer Support Group’s view (iv)?


They write: “Our charity...strongly supports the use of PSA testing as an easy first indicator of the possible need for follow-up investigation for prostate cancer.” They also actively plan and fund free public PSA test events like the one in Stroud I attended with nearly 500 men over 50. There is also a good video filmed at a similar event to the Stroud event, featuring retired consultant, David Baxter-Smith, who explains the PSA test very well.”  See the ten minute film at: https://youtu.be/o-YJvJ-3hGU

As someone who hadn’t got any symptoms but was picked up as having a high PSA by one of the group's free public PSA test event, I am very sympathetic to this view indeed!

Why does the UK has some of worst rates of prostate cancer in Europe?

The Association of the British Pharmaceutical Industry writes (v): "The UK’s prostate cancer statistics compare poorly in relation to those of its European neighbours. The incidence rate for prostate cancer is 111.1 per 100,000 in the UK, compared to a European average of 105.5 per 100,000. Furthermore, the rate of newly diagnosed cases of prostate cancer in the UK is 3% higher than the European average of 23%. Incidence of prostate cancer is increasing across the whole of Europe…. The mortality rate for prostate cancer in the UK is also higher than the European average. Whilst the mortality rate in the UK is 22.8 per 100,000, it is 18.9 per 100,000 in Europe. The UK has a disproportionately higher share of cancer deaths due to prostate cancer than the EU, with the share of deaths caused by the condition standing at 13% and 9% respectively."

Sadly chances of survival for UK patients to five years after diagnosis are also much lower than in Europe. Whilst over 84% of patients with prostate cancer in Europe will survive for five years, in the UK only 78% will survive with the condition for five years after diagnosis.

One of the reasons for this higher incidence is around the more frequent use of the PSA test in the UK and the earlier detection. However this does not translate into higher five year survival usually associated with early diagnosis. We need more research looking at referral processes and patient access to treatment and care to see what is impacting on rates in the UK. It is quite shocking that one in five men with prostate cancer in the UK stated that they did not understand the treatment options available to them; we urgently need improvements in increasing patient awareness of different treatments options (vi).


Public Health England statistics 2015; see here

Is it about money?

The Association of the British Pharmaceutical Industry writes (v): "The UK’s spending on healthcare overall, as well as on cancer and prostate cancer specifically, fall below the European average...The UK spends €497 million per year on prostate cancer...This is significantly lower than the highest spending countries in Europe such as Germany or the Netherlands, which only have marginally higher incidence rates than the UK. Whilst the Netherlands spends nearly €5 more per capita on prostate cancer than the UK, Germany spends more than double the amount on the condition with €20.40 per capita. Although the UK spends a similar amount per capita on prostate cancer as Finland, this is not reflected in outcomes. Finland’s five year survival rate is higher, suggesting that further improvements can be made to the way in which the UK spends its resources."

Public Health England statistics 2015; see here
Clearly healthcare is provided in different ways and it is not so easy to compare countries. Furthermore other aspects of health like the impact of varying diets seem rarely to be considered in thsi context. However all this makes it sound to me like there is work to be done! If other countries can get better survival rates then I am sure we can too. We clearly need a better test than PSA but at the moment that is what we have got. Is there a better way of using it?

Is it time for a baseline PSA test?


In a talk (vii) at the Cotswold Prostate Cancer Group with Dr Jon Rees (who was surgeon and researcher and more recently a GP), he argued against a national screening with PSA as most of the screening is done to men in their 70s and 80s. He argues instead we should be targeting, with PSA tests, men in their mid-50s and early 60s who have a family history or Afro-Caribean backgrounds. He also suggests we need to pay attention to baseline testing; someone at 49 is very low risk but it is still worth doing a PSA test as you can get a reading without the benign enlargement of the prostate. 

Research in Sweden with the blood from 160,000 men, has shown that if your PSA is above average in your 40s (normal is about 0.7) then your risks of prostate cancer are much greater. Hence Dr Rees argues that it is useful to test so that you can see whether further testing might be wise. In other words the the aim of a baseline PSA test is not to help diagnose prostate cancer, but to help work out your risk of getting prostate cancer in the future. If the test suggests you're at higher risk, you and your doctor can decide to do regular PSA tests. This looks like it might be a good way to spot any changes in your PSA level that might suggest prostate cancer.

PSA; more harm than good?


Finally it is worth mentioning the conclusions of the American Preventive Services Task Force (PSTF) who say that PSA tests for prostate cancer do not offer men any tangible benefit in lifespan or quality of life, and conclude that many more men are injured than helped by PSA tests (viii). Chris Woollams, of CANCERactive writes (ix): "The PSTF research concluded that only one man in a thousand tested would derive any real benefit whereas a staggering 100 will receive false positives. Many of these people will then have biopsies which can cause complications including infection."

It is said prostate cancer is "caused" by oestrogen. Oestrogen turns testosterone into DiHydroTestosterone, or DHT and it is this DHT that is the aggressor. The oestrogen may be human or chemical. It has been suggested (mainly in the US) that measuring this might be a more accurate measure of the aggression of the cancer (ix).

What next?


It seems to me that exploring the baseline approach further is overdue. Why if Sweden have found such useful results do we not explore this further? We also urgently need to find a better way of testing for prostate cancer. One of the suggestions at a recent Cotswold Prostate Cancer Support Group meeting was to see if the Gloucestershire Cancer Patient Reference Group might be a way of tackling this issue locally. Certainly the issue is fraught with challenges but it is surely time that we do better. I would hugely welcome any information that might help clarify or correct issues I’ve raised here; either comment or contact me direct.


Notes

(ii) Schroder FH, Hugosson J, Roobol MJ, et al. Screening and prostate cancer mortality: results of the European Randomised Study of Screening for Prostate Cancer (ERSPC) at 13 years of follow-up. Lancet 2014;384(9959):2027-35.




(vi) Quality Health, 2015 National cancer Patient Experience Survey, 2016, available at: https://www.quality-health.co.uk/surveys/national-cancer-patient-experience-survey , accessed February 2017.

(vii) See Dr Jon Rees talking: https://youtu.be/7c_JcR2H7Ac

(viii) http://www.junkscience.co.uk/2012/06/junk-science-number-18-the-psa-test-for-prostate-cancer/ 

(ix) https://www.canceractive.com/cancer-active-page-link.aspx?n=171&Title=Prostate

Monday, 15 October 2018

Whats the CCG? And how can we influence services?

So last week at the Cotswolds Prostate Cancer Support meeting there was over 40 guys plus some partners to hear Becky Parish, the Associate Director Engagement and Experience of Gloucestershire Clinical Commissioning Group (CCG). She started by giving a six minute overview of the CCG. You can see edited highlights in my film below.



There is also a great animation by the King’s Fund who give a whistle-stop tour of how the NHS works in 2017 and how it’s changing: https://www.youtube.com/watch?v=DEARD4I3xtE

Paving at Penny Brohn
The second part of the talk (see my film below) went into more about how the CCG engages with folk in Gloucestershire; this included how complaints and comments help shape services, the use of surveys, patient groups in GP surgeries, the Info bus that gets out and about across Gloucestershire and the Gloucestershire Cancer Patient Reference Group. I think this Cancer Reference Group is the only medical condition that has such a group and it is also not common to have such groups in other parts of the country. However it sounded like a powerful way to get the patient voice heard and has already helped set up a new Support Group for people with Colon Cancer and helped shape the MacMillan Next Steps programme.

I’m not sure I’m ready to dive into being a member of that group yet, but can see it could be a useful vehicle to raise many issues that I hear from others with cancer…although not all relevent to the Reference Group we always have some great questions and conversations at the Support Group. At the meeting last week here are some of the issues discussed:
 
Why is the message about diet/exercise/lifestyle not coming more from doctors? 
Why are folk cut off from both oncology services and Macmillan support when they seek private treatment? 
How can we improve consistency around PSA testing? 
Why can’t there be a more open conversation about complimentary medicine?
Could we do more PSA testing in the County?
 
I understand the Group will be inviting CCG representatives again so hopefully a chance to explore some of these issues further.


Thanks to Becky Parish for allowing me to film at very short notice; the editing is all mine so apologies if any of the editing makes Becky’s talk less clear.

Friday, 12 October 2018

Prof Dr Alexander Herzog: Hyperthermia and Cancer

I had transurethral hyperthermia treatment last November in Bad Aibling, a blog soon about that, but in the meantime I caught up with Alexander Herzog who used to work at the clinic I attended. He wasn’t there when I was, as he has established his own hospital in Nidda-Bad Salzhausen, where he has continued to specialise in oncology and develop hyperthermia treatments. His view is that some orthodox treatments showed benefits but that often the side-effects could be extreme. He therefore has worked on the use of complementary therapies to maximise the effects of orthodox treatments whilst reducing side-effects.




Alexander gave us a talk at the Guildford Wellness Day. I’m hoping that the whole talk will be available soon on the internet. He started his talk explaining hyperthermia was about heating up tumour tissues. The treatment has a long history - see the photo from an old medical text book using hot water bottles!

Of course it has developed over the years and there are various approaches that can enhance chemotherapy and radiation treatments but also used to treat cancer. Alexander took us through a whole series of case studies like the photo below which shows a rectal cancer disappearing - and explained some of teh science behind it.

In the talk Alexander looked more closely at orthodox, complimentary and alternative approaches. He feels that there is often mutual demonisation with orthodox being seen as being about science and aggressive cold, harmful treatments, whereas alternative medicine is soft, safe, warm and about emotions. He thinks this feeds uncertainty in patients and sometimes leads to wrong decisions.

Alexander suggests that up to 80% of all patients with cancer are looking for complimentary and alternative treatments - yet most don’t tell their oncologists. One of the reasons for this he suggests is that doctors have such little understanding or training of complimentary medicine and many are dismissive. Certainly some complimentary treatments don’t have lots of studies but many do - and many can significantly impact on quality of life.

Health practitioners are often coming from different positions. Orthodox medicine wants to ‘hit' the cancer whereas complimentary is about building the strength of the body to tackle the cancer. In the talk Alexander outlined some of the complimentary treatments that offer some important benefits, including mistletoe therapy, Japanese mushrooms, Ozone therapy and more. See my previous blog about the mind-body revolution that is unedrway - and that Dr H is very much a part of.

Chris Woollhams has a great website with info about cancer. His pages on hyperthermia are worth a look. See his overview at: https://www.canceractive.com/cancer-active-page-link.aspx?n=3078
See more about Dr Herzog at: https://www.hospitaldrherzog.de/

Meeting Megan

In this film made by Megan Bendell, she talks about her Documentary Photography projects. One of these was her highly intimat...