Sunday, 23 December 2018

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/

Saturday, 22 December 2018

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:


Sunday, 16 December 2018

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  

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