Talking to the Cancer Journeyman

Nick Parker

A journeyman is a skilled worker who has successfully completed an official apprenticeship qualification in a building trade or craft; they are allowed to work as employees but not yet as a self-employed 'master craftsman'. 'The Cancer Journeyman’ is the title of a blog by Nick Parker and describes well the ‘journey’ many of us go on with cancer; the huge amount of knowledge we gain about our ‘craft’ of wellness. In my own current ‘research’ about my next steps, I was fortunate to have a long phone call with him.

Nick was clear that what had worked for him, with his terminal diagnosis, may not work for everyone; it is about finding your own way. He also talked about how he filled himself with hope, had lots of set backs but found ways forward, solutions that worked for him. I loved a line he said, when thinking about treatments, that he sought all avenues that were kindest to the body. Our bodies are at dis-ease with themselves, we can find a way to bring more balance and health.

A lot of what Nick writes about on his website is about how we can change our attitudes, beliefs and actions and 'live the best years of our life'. His website shares his journey and some of his treatment protocol including nutrition and exercise. One of his tentative questions to me was about why I had cancer. I have had a number of thoughts around that and have been working on a blog on that very topic for a while (ready soon). When I started to share my answers with Nick, it was when I got to talking about the impacts of stress and life purpose, that Nick warmed more. Indeed, like him, I consider that a key route to our health is through the mind. 

Nick shared some of his own work around redefining his life purpose, using visualisations and meditations - the latter he credited for having a significant impact on reducing his PSA. On his website he writes: "I am no different to anyone: my minds tells me constantly that it is tough; that I don't want to do it. My mind questions me as to whether I really want to sacrifice other short-term pleasures in order to devote time to my long-term health.  However, i have realised that there is no other way. My history tells me that I have been a lazy & shortsighted fool. There is nothing more important than my health. I have learnt that, how ever hard, I have to control my mind, or else be a victim of it."

All this is a powerful reminder to me about what I wrote in an earlier blog about how changing thoughts can change behaviours, which change your biochemistry. There is lots more to wellness than following NHS treatments - and lots of it is not so easy! In the ‘About this blog’ section, when I started this blog, I quoted Sophie Sabbage talking about how cancer brings us an invitation to look within ourselves and decide who we are and how we wish to live. This feels even more true now and I can start to see, like Nick, that this cancer journey can be a gift - and part of that gift for me has been to connect with inspirational people like Nick (click on tag below for more inspiring people).

See more about Nick at: https://thecancerjourneyman.co.uk/

Next steps: conventional, complimentary or alternative?

Another NHS letter

Time for an update (see here for background info)….it’s been a busy year learning to live with cancer and my father being ill then dying. My PSA does seem to have responded to the transurethral hyperthermia, hormone treatment and significant lifestyle changes; it was originally 18.96 ng/ml and is now 5.5. However this, as my oncologist warned me two weeks ago, is still in the ‘red zone’ (and could lead to metastasis if it has not already done so). He made an ‘urgent’ referral to the surgeon for me to consider an operation. It seems, Glos NHS though is stretched, so already my 20th Dec appointment has been cancelled twice and is now on 14th January. 

It is strangely unnerving when one of those NHS letters arrive, not being quite sure what it contains. Certainly at the moment I am swinging from hope to despair and back again. I am weighing what course of action to take. It is so hard with such little info (or is that too much information?) and so many questions... 

Jo Lawrance cartoon

PSA is notoriously unreliable as a test; how much do I rely on this and my previous tests and scans from well over a year ago to make a decision?

Other tests/scans all have their challenges regarding what they can show about cancer; MRI for example has no ionising radiation but can’t tell if the growth is cancerous. What would be the best test/scan to gain a clearer picture?
 
What are the risks of metastasis?

Radical prostatectomy or radiation treatment are standard NHS treatments with what they say are the 'best outcomes’ for prostate cancer, but they often come with some dire side-effects and are not full proof in terms of tackling cancer. How can I try and reduce such side effects if I go down this route?

There are many other possible treatments, but many of these have less long term research regarding their outcomes; that goes for both the newer conventional treatments like proton beam and the complimentary ones. What choices are realistic?


Conventional, complimentary or alternative medicine?

One area I have been exploring is around the evidence for different approaches. There is a paucity of evidence regarding whether the use of complementary and alternative medicine (CAM) compared to conventional therapy has an adverse effect on cancer survival. However, many folk have strong views. For example David Gorski writing in the Science-Based Medicine website (2017) (i), known for it’s challenges to alternative approaches to medicine, concludes: "Use of alternative medicine alone to treat cancer is likely to be a death sentence, or at least to cause delays that make ultimate cancer treatment with conventional medicine more difficult and less likely to be successful”. 

However, it seems to me that little of use can be gleaned from a lot of this comparison research as the label ‘alternative medicine’ includes too many approaches to enable a study to come up with much that is meaningful. There are also different views about what constitutes complimentary and what is alternative - and for that matter there can also be wide differences between countries about what treatments are common. For example Mistletoe injections are rare in this country and not recognised by UK or US for cancer treatment yet they are common in Germany. Indeed The Ecologist reported in 2006 (ii) that: "More than 50 per cent of cancer patients in Germany are given 'mistletoe therapy' during their treatment and it is often considered a part of the oncologist's repertoire."

One recent study by Skyler et al (2017)(iii), concluded; 'we found that cancer patients who initially chose treatment with alternative medicine without conventional cancer treatment were more likely to die’. Scary for those choosing alternative treatments alone, but when you start unpicking this it is not so straightforward. For example they found no statistically significant association between alternative medicine use and survival for patients with prostate cancer.

It seems to me that different approaches have much to learn from each other. Certainly there is far too much nonsense and over-sell in some alternative medicine approaches. The number of wacky treatments available is huge and growing. It seems to me we need to be better able to assess ourselves whether they might be useful. There is a useful TED talk (iv) that looks at this - in particular explores confirmation bias - that is the tendency to only accept information that supports your personal beliefs. Such bias can lead us astray on social media, in politics and indeed in treatment choices and the way we look at our health. The talk offers three practical tools for finding evidence you can actually trust.

I don’t agree with the approach by Pinterest to websites discussing alternative treatments - they have just shut down accounts for Mercola.com, GreenMedInfo.com, the Truth About Cancer, Health Impact News, ChrisBeatCancer.com, and many more for “violating community guidelines” (v). Earlier this year Google were also found to be suppressing medical information and other content that the company deems unfit for readers (vi). This is surely limiting free speech and will just confirm views of anyone who thinks Big Pharma and others don’t want us to get well without buying their treatments? 

Quote from presentation by Grant Hatch

And what of the nonsense in conventional medicine like doctors who do not give advice about the importance of exercise, or dismiss healthier diets as 'not necessary' or 'useful’? Or ignore the impact the mind can have on the body? And why in the UK are treatments like high-intensity focused ultrasound (HIFU) for prostate cancer (that has been around mainland Europe for over fifteen years), only just seeing clinical trials in the UK? And conventional seems way too wedded to big Pharma and completely ignoring approaches like using curcumin (turmeric) - there is loads of research about its benefits to those of us with cancer.

Anyway I should conclude this blog….this is certainly not the end of this discussion...lots of food for thought as I plan my next steps on my journey to wellness. Seasonal greetings to all readers and here’s to a healthy 2019!

Update 17.05.19: Blog looking at research by Yale, 'The Danger of Complementary and Alternative Medicine':
https://pcnrv.blogspot.com/2018/07/the-danger-of-complementary-and.html

Notes:

(i) See: https://sciencebasedmedicine.org/alternative-medicine-kills-cancer-patients/
(ii) See: https://theecologist.org/2009/dec/18/cancer-drug-other-use-mistletoe
(iii) Journal of the National Cancer Institute by Skyler et al, entitled “Use of Alternative Medicine for Cancer and Its Impact on Survival.” https://academic.oup.com/jnci/article/110/1/121/4064136
(iv) See: https://www.ted.com/talks/alex_edmans_what_to_trust_in_a_post_truth_world

(v) See: https://thetruthaboutcancer.com/pinterest-censorship/

(vi) See: https://www.naturalnews.com/2018-06-13-google-is-actively-censoring-natural-health-websites-to-protect-big-pharma.html

To biopsy or not?

Quick drawing made on a train; inspired pic on Prostate Cancer UK

When I had my biopsy last year there was little talk of any side-effects or possible impacts other than the standard list I consider below. Would I have the biopsy with what I know now? I’m not sure, but hey this is all so individual that we all have to come to our own conclusions for what is right at that time. I’m also aware that a little knowledge can be dangerous so treat carefully blog readers!

What is it?

Well a 'TRUS prostate biopsy' is basically 10-12 thin needles that are guided by ultrasound and used to take small samples of tissue from the prostate; these are then studied and give us a Gleason score. Some people - hopefully all now - will also have had a special type of magnetic resonance imaging (MRI) scan, before having a biopsy; this can help see if there is any cancer inside your prostate and also help with guiding the needles (although after news this month I would be wary of MRI’s using contrast dyes) (i). I have to say it is not so great to have a probe up the back passage and what feels like a gun being ‘fired’ 12 times into the prostate - but also not terrible! However, it is possibly better than the other type of biopsy, a template (transperineal) biopsy, where the needle goes through the skin between the testicles and the back passage?

What is Gleason?

The score is named after Donald Gleason, a pathologist at the Minneapolis Veterans Affairs Hospital, who developed it with colleagues in the 1960s. Our prostate cells are looked at under a microscope for the different patterns and speed that they are likely to grow. I think prostate cancer is the only cancer measured looking at the ‘architectural’ patterns. Anyhow these patterns are graded from 1 to 5 with only 3, 4 and 5 being cancer; the higher the grade, the more likely the cancer will spread beyond the prostate. The samples from the biopsy may vary so an overall score is calculated by taking the most common grade in all the samples and then the highest grade of what’s left. These two grades are then added together to give the Gleason score. In my case that was 3+4 totally 7; this is better than a 4+3. Yes a weird way of measuring that is not so clear to many of us! 

Why do it?

Well, a biopsy is the only way to find out for certain if you have prostate cancer. It may also be able to give some indication of how aggressive the cancer is and likely to spread; this can lead to earlier treatment and potentially stopping the cancer spread.

What are the possible problems with it?

1. Accuracy? The biopsy can only show whether there was cancer in the samples taken, so it’s possible that cancer might be missed. It is hard to assess from the research online how accurate biopsy results are today…certainly lots saying how inaccurate, but more recently by combining with MRI the results are improved very significantly.

Professor Emberton talking on the BBC’s Inside Health (ii) a year ago says of the 2015 PROMIS trial (iii) that it showed; "that our standard of care is really very poor so that our standard biopsy, which we’d been relying on for about 40 years, misses over half of all the clinically important cancers. So half the men who were told they were all clear were indeed harbouring clinically significant disease. MRI was about twice as good, it had a sensitivity so its ability to detect clinically significant disease is present in excess of 90%.  And so the majority of patients that had clinically significant disease were successfully detected”.

Local artist Russ cartoon

The MRI will also hopefully put an end to as many as 25% of biopsies and some over diagnosis of prostate cancer. This can only be good news as most of us have some negative reactions to a cancer diagnosis! In the book, with a rather scary title, “Invasion of the Prostate Snatchers: No More Unnecessary Biopsies, Radical Treatment or Loss of Sexual Potency“ by Dr Mark Scholz and Ralph Blum they note that during the first two weeks after diagnosis the risk of suicide goes up twenty-two fold and heart attacks are ten times more likely (iv).

2. Side effects? I guess if finding more out about your cancer saves your life, these are a minor consideration. However, it is worth noting them as some of us have not had such an easy time! See Prostate Cancer UK’s website for more on side effects and of course talk with your doctors about any/all of this as some symptoms require a quick trip to A&E (v):

Pain or discomfort - Some men will feel pain or discomfort in their back passage (rectum) for a few days or weeks afterwards. Each man is different and while some find the biopsy painful, others have only slight discomfort. My discomfort sadly went on for over three months including making it difficult to sit in the first couple of weeks.

Short-term bleeding - It’s normal to see a small amount of blood in your urine or bowel movements for about two weeks and in the semen for a couple of months. That probably looked more scary than it actually was! A small number of men (less than 1 in 100) may have more serious bleeding in their urine or from their back passage (rectum). 

Infection - Some men get an infection after their biopsy and antibiotics are given prescribed, I think to all, to try to prevent this. 

Acute urine retention - a guy I spoke to had this - it is not at all common but I understand the biopsy causes the prostate to swell making urination difficult.

Sexual problems - some guys have difficulties for example with erections for a couple of months after the biopsy.

3. Spreads cancer? Well, Dr Larry Bans, MD at the Cancer Treatment Centres of America unequivocally writes: “The risk of ’seeding’, or ’tracking’, or ’spreading’ cancer with prostate needle biopsies, if there is a risk at all, has to be exceedingly rare and low.”

There are various analysies supporting this view. For example in 2014 in a paper published by Volanis et al, they showed that the number of prostate biopsies conducted each year has continued to increase, yet there is no apparent proportionate increase in the rate of track seeding resulting from prostate biopsies. They also found that most of the described cases of seeding involve neuroendocrine tumors of the prostate, which are <1% of prostate tumors. This is reassuring to those of us with an adenocarcinoma. Seeding is said to occur more often in some other cancers like pancreatic cancers (vi).

However, while the majority of medics believe there is no or very little evidence for seeding, concerns still persist. The worry is that cancer cells are pulled along the track formed by the needle or worse, spill directly into the lymphatic system or bloodstream. This is more likely when the biopsy punctures the tumour a number of separate times in order to obtain adequate tissue for diagnostic purposes.

The BMJ in July 2018 published G. David Stainsby and Susan Bewley, who write (and I quote nearly in full as it covers some important ground) (vii): "Men should be warned about uncertain safety of multi-needle prostate biopsy. Godlee et al. stress that researchers must accept patients as full partners included in design, conduct and reporting of clinical research, along with presenting and disseminating results to participants and relevant communities. However, patient/research subjects must also take centre stage regarding safety. Population screening for prostate cancer with PSA has failed to improve men’s survival. Treatment outcomes remain disappointing, especially following radical surgery for ‘early intra-capsular disease’. Five recent studies report underestimation of tumour extent on histology of excised prostate glands: in a third of men malignant tissue was outside the capsule; in a quarter tumour tissue was incompletely removed in the unsuccessful operation. Nevertheless, urologists press on, using ever-increasing numbers of biopsy cores in men with only slight elevation of PSA, seemingly indifferent to the possibility of local extension and needle track spread. Thus, this potential adverse event has not been routinely sought. Suggestions that MRI scan post-positive biopsy might accurately assess the extent of malignant tissue before treatment decision-making have been disregarded. Men managed by 'watchful waiting or ‘active surveillance’ may receive repeat interval biopsies with additional risks of local tumour extension each time. Without adequate investigation of potential local effects of multi-needle prostate biopsy, there is uncertainty about harm. Not looking leads to ‘lack of evidence' which should not be accepted as ‘evidence of no harm’."

There is also evidence that inflammation can cause prostate cancer metastasis (viii). Certainly if my biopsy took over three months to feel comfortable I’m guessing there was inflammation a fair bit of that time?

It is also interesting that three different doctors in two Hospitals in Germany also warned against biopsies. My own German doctor said before I had the transurethral hyperthermia that it would be less successful due to me having a biopsy. This was a view shared by a number of doctors I heard speak at Trew Fields and an integrative doctor who I have just seen locally. 

It seems to me that there is enough doubt to conclude "Men should be warned that multi-needle prostate biopsy has the potential to cause extra-capsular tumour spread.” 

So where does that leave us? 

I don’t know! I’ve already written about how inaccurate the PSA test is and now here I am finding biopsies may not be so good? This is perhaps a blog for the future but one possible thought for now came after reading a paper from 2017 (ix) that puts forward the idea of measuring PSA and serum ferritin together. They write: "In conclusion, serum ferritin is significantly associated with prostate cancer and may serve as a non-invasive biomarker to complement the PSA test in the diagnosis and prognostic evaluation of prostate cancer.” Could this, even with a PSA that is not so accurate, help diagnose prostate cancer instead of the invasive biopsy? Update Dec 18: I suspect not great as I have now read that further tests re Serum ferritin have been inconclusive re diagnosis (x). :(

As always, thoughts welcomed.

 

Update 29/08/20: I've just heard about a movement called "Trexit"; a "complete and clean break" from transrectal prostate biopsy in favor of transperineal (TP) approaches for diagnosing or monitoring prostate cancer: https://www.medscape.com/viewarticle/912823

Notes:

(i)  See more: https://www.radiologybusiness.com/topics/care-delivery/gadolinium-actual-offender-or-unwitting-pretender and https://medshadow.org/features/mri-gadolinium-contrast-agent/
(ii) BBC’s excellent Inside Health from a year ago: https://www.bbc.co.uk/programmes/b086s7jr
(iii) See more re PROMIS trial: https://www.ncbi.nlm.nih.gov/pubmed/25749312   
(iv) See: 'Completed Suicides among newly diagnosed prostate cancer patients' (2008) by Inner Valdimarsdottir and 'Cardiovascular events among newly diagnosed prostate patients' (2008) by Fang Fang
(v) See: https://prostatecanceruk.org/prostate-information/prostate-tests/prostate-biopsy
(vi) See: https://sperlingprostatecenter.com/truth-biopsy-track-seeding/
(vii) https://www.bmj.com/content/362/bmj.k3193/rr-10 
(viii) March 19, 2007 in the journal Nature described the findings of University of California San Diego: https://www.ncbi.nlm.nih.gov/pubmed/17377533  

(ix) See: https://www.ncbi.nlm.nih.gov/pubmed/28160568
(x) See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5392292/

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

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

(iv) UK Government advice re exercise: https://www.gov.uk/government/publications/physical-activity-applying-all-our-health/physical-activity-applying-all-our-health

(v) See more re Next Steps at: https://www.glos-care.nhs.uk/our-services/specialist-care/macmillan-next-steps

(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

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.

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.

See also my blog post on biopsies here.


Notes

(i) https://www.prostatecanceruk.org/prostate-information/prostate-tests/psa-test#who-can-have-a-psa-test

(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.

(iii) https://www.gov.uk/government/publications/prostate-specific-antigen-testing-explanation-and-implementation

(iv) https://tacklegroups.org.uk/site-19/

(v) http://cancercomparator.abpi.org.uk/resources/ABPI%20prostate%20cancer%20briefing%20July%202017.pdf

(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