Sunday, 5 May 2019

The protocol

So this is an overview of my treatment plan. I’ve covered stuff or will cover stuff in more detail in other blogs but this is the overview to date. Do also see why I am currently doing 'Active Surveillance' here despite my NHS doctors recommending radiotherapy and hormone treatment. I can’t hope to cover the detail of all the things I am doing in this blog, but will cover the breadth and hopefully in future blogs will look at each part in more depth. 

My three favourite books that have guided me can be seen here - I’ve read much more but these three are the ones that have helped most with this protocol. I do like the way they explore key aspects like taking control of your health, following intuition, releasing suppressed emotions, managing fear, increasing positive emotions, having strong reasons for living, deepening your spiritual connection and much more.

However this protocol is also based on my own research, talking to others in our Stroud Wigwam, my doctors and others in my ‘health team’. It goes almost without saying that this is ‘my' protocol and I am not suggesting that this will work for others - heck I don’t even know if it will work for me!  But I do know from the research I’ve done and my own current health, that this is doing me good and will be giving me a great shot at my body healing itself.

This protocol started after my diagnosis but has been built on over the last months with for example the supplement regime starting December last year but being fully in action from March this year. I’ve not included the transurethral hyperthermia treatment in November 2017 that was followed by six months of hormones (that will be another blog!). The protocol is also not static; each week I am reviewing aspects and sometimes making changes. I realise how fortunate I am to be in a position to be able to afford to take these actions. It is also worth saying that some of the most healing experiences are not necessarily listed below or have a cost - take for example the wonders of a walk in the woods or a healing conversation with someone. 

Of course I sadly don’t manage to do all of this everyday as work, family and life takes over at times but this is the stuff I aim to do - and most of it does get done. The topics are huge so I can only touch on them here - I imagine that each of them like nutrition or hyperthermia will be at least one blog in the future and I will add them to this post.

So what does a typical day look like? 

Shower; probably goes without saying that we try to use all natural products and have found a filter that takes out chlorine. I haven’t managed to get into dry brushing.

Essential oil mix; for prostate area and have also used certain oils internally.

Squeezed fresh lemon; in warm water about 15 mins before eating.

Exercise; rebounding (small trampoline) 10-15mins probably 5 times a week but also try and get walks in, digging the allotment and doing one cancer exercise class in a gym every Friday. I was doing a weekly yoga and hope I can restart that in summer. I also regularly go through patches when I am good at doing Pelvic Floor exercises. See my initial blog re exercise here but more coming.

Food/nutrition; in short I’m vegan with the exception of oily fish once or possibly twice in a fortnight. I am also gluten free, refined sugar free and avoid most processed goods.

Juices/Smoothies; will try and get one or two of these each day.

Beverages; I try and drink more filtered water as not always good at that but also use Essiac tea, Jason Winters tea, green tea and love my coffees.

Supplements; do see my previous blog on this here - I am now doing most of that plus some extras like a quality CBD product. See more blogs re supplements here.

Infrared sauna; three times a week for about 20 minutes, once a month or every six weeks I will do a hyperthemia treatment.

Baths; very occasional but will use Epsom salts or Magnesium flakes.

Work; I am fortunate to enjoy my work but it has been necessary to slightly reduce hours as I wasn’t managing to do this protocol fully. I also have to note that my work colleagues have ben hugely supportive.

Meditation; this is not at all regular enough. I have found some music particularly helpful.

Other mind stuff; oh my this is a big topic and probably the one that challenges me most and feels the most important. I have had counselling, I value the Wigwam support group and indeed the Prostate Cancer Support Group. 

Sleep; need to get more of this - but worth noting we switch Wi-fi off every night to try and reduce EMF exposure.

My current ‘health team’

Family - I can’t not start this list without mentioning my partner who has been totally amazing on this journey, offering the right amount of challenge and buckets of support - and of course also my family who have helped financially and with emotional support.

Medical team: GP, Oncologist and Nurse

Naturopath and healer every couple of months, 
Integrative Doctor for advice and tests every month or so,
Shiatsu monthly,
Healer occasionally

I guess I’ve probably missed some small parts of the protocol but this gives a good overview.

Saturday, 4 May 2019

Best three books when you are first diagnosed?

I’ve read tons and have many books looking at cancer from many different viewpoints, but these are my favourites in terms of helping plan how to deal/manage a cancer diagnosis.

Sophie Sabbage "The Cancer Whisperer” - Sophie was diagnosed with late stage 'incurable' lung cancer and embarked on an amazing journey of healing. The book covers her relationship with cancer, fear, guilt, her research, diet and more. I particularly loved the idea of 'cancer whispering’; instead of going to war with cancer we can learn from it and choose our own response to it. I’ve heard Sophie speak several times and have been fortunate to go on one of her workshops. I totally rate this book and have bought it for a number of others diagnosed with cancer, family and even my GP. 
Sophie says: 'This book is for the cancer patient who wants to remain a dignified, empowered human being even when your doctors and diagnosis are scaring the hell out of you. It is also for the cancer patient who has a hunch that there is something for them to learn, gain or even be transformed by - if they just knew how to relate to this disease differently to the way most of society does. It is for the cancer patient, perhaps any patient.'

Chris Wark “Chris Beat Cancer” - Chris is a stage 3 colon cancer survivor who opted out of chemotherapy after surgery. He provides the toxin-free diet, lifestyle, and therapy guidelines he used to help himself heal. His strategies include a radical diet where he takes ‘massive action’ to heal plus lifestyle changes; and mental, emotional, and spiritual healing, as well as advanced integrative therapies. I love Chris’s can-do approach and also his regular videos which include in depth inspiring interviews with cancer survivors about their approaches.

Kelly A. Turner “Radical Remission, Surviving Cancer Against All Odds” - Dr. Kelly A. Turner’s research involved travelling to ten different countries to interview fifty holistic healers and twenty radical remission cancer survivors about their healing practices and techniques. Her research continued by interviewing over 100 Radical Remission survivors and studying over 1000 of these cases. Her evidence presents nine common themes that she believes may help even terminal patients turn their lives around. Each of those themes are worth consideration.

What would you recommend? More book reviews coming soon!

Sunday, 28 April 2019

A quick look at radiotherapy

Local artist Russ
So in the last three blogs I’ve covered why I didn’t choose a prostatectomy, why I am delaying NHS treatment of hormones and radiation plus in the third blog a closer look at hormone treatment. In this blog I want to take a closer look at radiation. Again I note that I might very well choose this option in the future but at present am postponing the decision. This blog is my first closer look at radiation. I welcome comments and corrections as it is very hard to find a way through all of this.

How does it work?

The aim of radiotherapy is to destroy prostate cancer cells without causing too much damage to healthy cells. Brachytherapy is a form of internal radiotherapy that treats the prostate cancer with radiotherapy from inside the prostate gland. My cancer wasn’t suitable for this so I’m being offered the more commonly used external beam radiotherapy. This is high-energy X-ray beams targeted at the whole prostate from outside the body. These X-ray beams aim to damage the cancer cells in the prostate but also in the area just outside the prostate. I am told that radiotherapy kills the cancer cells and stops them spreading, but healthy cells can repair themselves. 

The treatment itself is painless but it can cause side effects that may cause problems which I cover below. If there is a risk that the cancer has spread to the pelvic lymph nodes - a common place for prostate cancer to go - then the radiotherapy will be given to a wider area and the side effects will be more likely and be stronger. Radiotherapy has improved in recent years, and doctors are often able to shape the beam to the exact treatment area so it is suggested that outcomes are better now than a few years ago.

If the cancer spreads (advanced or metastatsis), external beam radiotherapy won’t cure the cancer. However it can be great in helping with symptoms such as bone pain. And new research has found that giving radiotherapy to the prostate itself can help some men who’ve just been diagnosed with advanced prostate cancer to live longer.

There are two common types of external beam radiotherapy: intensity-modulated radiotherapy (IMRT) and 3-dimensional conformal radiotherapy (3D-CRT). You can read more at the Prostate Cancer UK website (ii).

The treatment is usually only 10 minutes long but often you will need to be in the hospital for a couple of hours or more. You go five days a week for some weeks. You have to empty your bowels before each session (enema or suppository can be used) and often have to have a full bladder. I understand from talking to the team at Cheltenham that the machines break down often so you can expect to wait on a number of occasions. Again you can read more on the Prostate Cancer UK website about what to expect before the treatment including getting three small tattoos to help position the treatment and several rice grain-sized ‘gold seeds’ inserted via a needle into the prostate to also help with positioning the radiotherapy. I have had folk recommend a rectal spacer to help protect the bowel; I don’t know if Gloucestershire use these but private clinics can help.

As noted previously and in the last blog, hormones are part of the treatment and there is evidence to show that hormone treatment prior to radiotherapy has better outcomes (i). Indeed Prostate Cancer UK's Winter/Spring 2019 Insight magazine highlights new evidence from the STAMPEDE trial shows that upfront radiotherapy could extend the lives of 3,000 men in England. Treating prostate straightaway with radiotherapy and hormones increased survival rates for men whose cancer had only spread to hnearby nodes and bones to 83%. This compared to 73% of men who did not get radiotherapy. This is somewhat of a game changer in that it was thought that there was no point in treating the prostate itself if the cancer had spread, but this shows there is benefit.

In my specific case it has been suggested that such treatment will have a 70% survival rate at 5 years. However it is almost impossible to look at the stats and unpick them - and at the end of the day that seems pretty pointless as we are all so very different. 
Sophie Sabbage has some wise words in her book, “The Cancer Whisperer”, where one of her recommendations is : “Avoiding Statistics: staying away from soul-sapping, fear-inducing information that discusses indicators, but not inevitabilities.” That doesn’t mean we should settle for half-truths she says “Don’t let your oncologist or doctor protect you from the full facts. Push them for answers until you are satisfied you know it all."

Side effects

Now there are loads of these both short and long term so again suggest checking out Prostate Cancer UK. The short term include urinary problems, bowel problems, ejaculation problems, skin irritation, hair loss plus tiredness and fatigue which usually improves several weeks after treatment (depending on whether you also have hormone treatments). 

Long-term or late side effects of radiotherapy can occur several months, or even years, after finishing treatment and can last a long time or are ‘permanent’. These include urinary problems (in some cases this needs surgery), bowel problems can particularly develop months or years later, erection problems, it can also affect any children you might conceive, lymphoedema, hip and bone problems plus other cancers (iii).

Radiotherapy can cause cancer

Prostate Cancer UK write about radiotherapy saying that ‘there is a very small chance that this could increase your risk of bladder or bowel cancer. It would take at least 5 to 10 years after having radiotherapy treatment for a second cancer to appear.’ At the moment I haven’t been able to establish the level of risk; how small? 

Chris Wark in his excellent book, “Chris Beat Cancer, A Comprehensive Plan for Healing Naturally” (2018), notes that when radiotherapy shrinks a breast cancer tumour by 50% we all think that is a good thing. However he goes onto say that researchers at UCLA have found that the radiation often kills benign cells and makes the surviving breast cancer stem cells resistant to further treatment. Indeed they found that they were up to 30 times more likely to form new tumours than the non-irradiated breast cancer cells (iv). 

Other research found that radiotherapy wasn’t just creating more aggressive, stronger cancer cells, but also created new breast cancer cells (v). Indeed radiotherapy has also been found to increase cancer stem cells in the prostate, resulting in cancer reoccurrence and worsening prognosis. There are clearly other risks to radiotherapy, for example breast cancer treatment has been found to lead to significant damage to the heart and arteries, causing heart disease. 

One research review (vi) concluded: "Radiotherapy is associated with a modest increase in secondary cancers. In the treatment of prostate cancer, the risk of dying from a secondary radiation-induced bladder cancer may be greater than the risk of dying from the primary prostatic tumor following surgery or watchful waiting. Although the overall risk of secondary cancers is not high enough to question or defer the need for radiotherapy in prostate cancer, there is concern regarding the adverse effects of radiation therapy in low-risk patients with minimal risk of dying from prostate cancer."

Would ignorance have been bliss? No I still believe knowledge is power….but I do love the quote by Robert Staughton Lynd who warns: "Knowledge is power only if man knows what facts not to bother with.” So very true and dangerous to pick and mix some facts to tell a story….

20 or 37 days of radiotherapy?

Basically for prostate cancer you will get one treatment (known as a fraction) at the hospital five days a week, with a rest over the weekend. You go home after each treatment. If you have localised prostate cancer, the course of radiotherapy usually now involves 20 treatment sessions over four weeks (hypo-fractionated radiotherapy). At some hospitals, you’ll have 37 sessions over seven or eight weeks instead. 

I am not entirely clear about Gloucestershire radiation treatments yet. Studies have recently show that having fewer treatment sessions over four weeks works just as well for men with localised prostate cancer as having more sessions over a longer time. Although the dose per fraction is higher than standard radiotherapy, the total dose is lower. The risk of side effects is also similar(vii). I am being offered 4 weeks whereas 18 months ago the offer had been 7/8 weeks. 

Radiation dosage is measured in Grays (Gy). Tackle Prostate Cancer group (viii) write: "Depending on clinical indications, for conformal radiotherapy 74 Gy in daily 2 Gy doses or ‘fractions’ is used to the prostate. Increased dosage over a shorter period in conformal radiotherapy has been shown to have detrimental results. However, increased dosage can be given with the latest IMRT machines, where damage to surrounding tissues (e.g. bladder and rectum) is considerably reduced."

What can be done to help radiotherapy?

Health Unlocked site for Prostate Cancer
There is lots of great advice (and some less great advice) in discussion sites on the web like Health Unlocked (ix). In one thread there are many comments with comments like "Exercise a LOT!”, “towards the end, if you have a long drive, bring something in the car to pee into” and “don't strain on the toilet”.

Chris Woollams on the Canceractive site (x) has lots of great advice about supplements, hyperbaric oxygen and more. Michael Gregor of also has advice like reducing radiation damage with ginger and lemon balm (xi). There is also research to suggest that antioxidant supplementation impacts negatively on some cancers, but it is hard to unpick the truth (xii). In an article by Dr Geo he gives a great overview of the research and prostate cancer and makes some useful recommendations (xiii).

It has been interesting to talk to several local folk about their radiation experiences. It seems beyond doubt that exercise and diet is key to reducing the side effects. I have seen several people sail through their radiotherapy with a careful programme to maintain health. This is in sharp contrast to others who have had a very rough ride - of course we should not forget that we all react differently, but exercise and diet clearly give folk a better chance.

Update 1/05/09: Just read that the time of radiation is given can also impact on the treatment - see here.

In summary 

As we’ve noted before there are those who think that instead of trying to kill all the cells in a tumour with chemotherapy or radiation, it would be better to use treatments targeted directly at the cancer stem cells. If the stem cells were eliminated, the cancer would be unable to grow and spread to other locations in the body. Radiotherapy doesn’t get at what caused our cancers but it does remove a chunk of it with what seems like a real chance to eliminate most of it. However as we’ve seen above there are risks and some will see secondary cancers. As noted in previous blogs at present I am postponing treatment while I actively working on my current protocol - an overview of that will be in the next blog.
See more at the following re research about radiotherapy making cancer stronger:

Tuesday, 23 April 2019

A look at hormone treatment

My last blog covered some of the key reasons why I am postponing the NHS recommended treatment for my prostate cancer (do read that as context for this blog). I wanted to explore in this blog hormones, some of the challenges they present and the hopes and the next blog will look at radiation. I note again that I have not ruled out this route, but am just postponing my decision.

1. Hormone treatment. 

I am still trying to get my head around these hormones - particularly as prostate cancer is a hormone driven cancer. In truth I haven’t yet been able to fully understand how they work so maybe another blog in the future…….but for now it seems some argue that testosterone doesn’t usually cause problems but, if you have prostate cancer, it can make the cancer cells grow faster. If testosterone is taken away or blocked, the cancer will usually shrink, wherever it is in the body. The hormone therapy works in two ways – either by stopping your body from making the hormone testosterone, or by stopping testosterone from reaching the prostate cancer cells. PSA levels can drop to near zero and prostate cancer cells die through the process of programmed cell death, a.k.a. apoptosis.

It is interesting (and confusing to me) that a large study shows that supplemental testosterone does not fuel prostate cancer (i). See also a very useful article here looking at how for decades, the medical establishment erroneously conjectured that testosterone replacement therapy increases one’s risk of prostate cancer (ii). Indeed it would seem that according to a number of observa­tions and some published studies, low levels of testosterone seem to predispose men to prostate can­cer, including more high-grade Gleason score tumors. So my understanding is that as we age testosterone con­verts to estrogen and DHT, and these two testosterone metabolites have been shown to be involved in benign and malignant prostate disease. Indeed estrogen is a cell growth promoter that has been implicated in the development of prostate cancer (iii). So it seems testosterone and estrogen play a complex role in cancer.

My experience? 

After the transurethral hyperthermia treatment in Germany, I had six months of hormones; Finasterid 5mg, Bicalutamid 50mg and two Trenatone injections that each last three months. The doctors there considered that the biopsy I had, could have encouraged the cancer to spread (see my blog re the biopsy here). 

In terms of estrogen my levels were normal in November 2017 before starting the hormones but by December 2018 were way above normal. As part of my supplement protocol I have been taking Indole 3 Carbinol since January this year which has been shown to be helpful to lower estrogen levels (see my supplement protocol here). 

The hormones clearly cut my PSA to virtually nothing but it climbed again four months after I had stopped taking them. There is lots of evidence to show they are an effective treatment for prostate cancer, but they seem to be more about holding the cancer at bay rather than stopping it altogether.

I was interested to read that a recent study found that men taking finaste­ride for prostate cancer preven­tion were far more likely to benefit if they had lower estrogen levels prior to initiation of treatment with finasteride (iv). This links to my comment above regarding estrogen and that at least my levels were lower when I started the treatment. This study showed higher concentra­tions of estrogen to be associat­ed with increased cancer risk; hence the priority to try and reduce my own levels of oestrogen.

Side-effects; an 'extreme menopause’?

My own experience of hormone treatment wasn’t great in terms of side-effects. Of course not everyone experiences such negative side effects of hormones, indeed a friend and others I’ve met, have managed well with few side-effects. 

  • Hot flushes and changes to mood; very hot and sweaty and sometimes needed to change clothes or bedding and was woken by flushes four or five times a night at it’s worst. They also, at times, made me feel irritable and uncomfortable, but I still don’t try those jokes about it being worse than a woman’s menopause! We all experience these things differently.
  • Extreme tiredness; yes but this also was caused by the stress of diagnosis, treatment etc.
  • Strength and muscle loss; ten months on since finishing the hormones and I still have significant muscle loss and finding it hard to restore muscle.
  • Breast swelling; fortunately not for me but a couple of guys at the cancer exercise class joked about the heart monitor strap around their chests being 'great support’! I think this is symptom is more often when hormones are taken for longer.
  • Weight gain; didn’t have this one, in fact lost weight due in part to changes in diet.
  • Sexual function; libido, orgasm and erections - basically sex virtually ended several weeks into taking the hormones and only returned some months after stopping them (v).
  • Other stuff: There are also greater risks for other diseases like for example severe kidney problems (vi), osteoporosis (bone thinning), loss of body hair, heart disease, stroke, diabetes
You can also see more about side-effects here and a three minute video here by Dr Susan Sloven.

Can treatment cause cancer? 

There have also been some conflicting results that indicated some hormones like finasteride increase prostate cancer death. Fortunately that seems to have been disproved by a study this year (vii).

However there is a new study that details how prostate cancer can be transformed into a much more aggressive disease: lowering androgen levels can make prostate cancer cells shrink or grow more slowly but those of us who receive these new treatments, are also more likely to develop a deadly, treatment-resistant cancer called neuroendocrine prostate cancer (NEPC) (viii). While this seems to only be a small number of people there are no effective treatments for this type of cancer.
There is evidence that some other hormone treatments (eg glucocorticoid) can increase chances of cancer returning and can have significant impact on longterm quality of life (ix).

There are also controversial doctors like Dr Lee who wrote a booklet entitled, “Hormone Balance for Men” (2003). He seems to suggest that the hormone treatments make men more estrogen-dominant and therefore speed up the spread of cancer (x).

These random links here don’t really allow for a fair picture regarding the risks of hormone treatment. It is remarkably hard to find articles that give a more balanced view. If anyone reading this can help out please do share.

NHS proposals?

The offer from NHS is for three months of hormones then radiation with possibly more hormones. Some folks end up on hormones for years and while the plan for me is to only be on them for a short time this doesn’t always work out. As yet I have been unable to establish what hormones or strength I’m being offered. The evidence seems clear that the addition of androgen deprivation therapy (ADT) to external beam radiation therapy (EBRT) can improve overall survival in prostate cancer (xi). 

Patricia Peat in her book, “The Cancer Revolution, Integrative Medicine, The future of cancer care” writes “The problems with orthodox hormone therapy in a holistic sense are:
  • It does not address the treatment side-effects, which many people find debilitating
  • If it isn’t working properly, doctors have no way of analysing this
  • It does nothing to address the underlying issues. Once treatment stops or cancer evolves to the point where it is ineffective, the original problem re-emerges unchanged.”
Patricia goes onto say this is an opportunity to reassess lifestyle choices; something I have been doing over the last 18 months and will share more in a blog about my protocol coming very soon. She writes: “Diet, liver function, endocrine function, gut symbiosis and stress are the main causes of poor hormone methylation and are all within your influence."

So I'm left with more questions than answers. Any insights from readers welcomed!


And see more at:

The protocol

So this is an overview of my treatment plan. I’ve covered stuff or will cover stuff in more detail in other blogs but this is the overv...