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."

April 2022: Just saw this conclusion in a study: "Using a higher radiotherapy dose when treating prostate cancer does not reduce the chance of developing metastases or death, but it does reduce the chance of having a rise in prostate-specific antigen (PSA) signifying recurrence of cancer. Androgen deprivation therapy improves all outcomes. A safe increase in radiotherapy dose in conjunction with androgen deprivation therapy may be the optimal treatment."

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 NutritionFacts.org 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.

Notes:

(i) https://news.cancerconnect.com/prostate-cancer/androgen-therapy-prior-to-radiation-therapy-improves-outcomes-in-prostate-cancer-djR6b4p_i06pgFzklwuafA/

(ii) https://prostatecanceruk.org/prostate-information/treatments/external-beam-radiotherapy 

(iii) Side-effects of radiation over the longer term: https://www.nejm.org/doi/full/10.1056/NEJMoa1606221?query=recirc_curatedRelated_article 

(iv) https://onlinelibrary.wiley.com/doi/full/10.1002/cncr.27701 

(v) https://stemcellsjournals.onlinelibrary.wiley.com/doi/full/10.1002/stem.1058

(vi) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3126090/

See more at the following re research about radiotherapy making cancer stronger:

https://www.webmd.com/cancer/news/20080610/treatment-can-make-cancer-stronger#1 

https://www.researchgate.net/publication/224708470_Long-Term_Recovery_of_Irradiated_Prostate_Cancer_Increases_Cancer_Stem_Cell 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5103903/
(vii) Some useful links regarding research re dosage and length of treatment:

https://gucasym.org/daily-news/radiation-therapy-prostate-cancer-getting-shorter

https://scienceblog.cancerresearchuk.org/2016/06/20/prostate-cancer-trial-results-should-mean-fewer-hospital-trips-to-have-radiotherapy/

https://medicalxpress.com/news/2018-04-shorter-courses-prostate-cancer-radiotherapy.html(viii) https://www.tackleprostate.org/external-beam-radiotherapy.php
(ix) Advice discussion from prostate patients: https://healthunlocked.com/advanced-prostate-cancer/posts/private/140168744/foods-and-any-advice-that-helped-you-get-through-8-weeks-of-radiation-while-still-working-any-tips-would-be-appreciated?uid=04744a36-38bc-4d16-920d-410e278f5417&utm_campaign=advanced-prostate-cancer&utm_medium=email&utm_source=notification&utm_term=new-daily+digest
(x) https://www.canceractive.com/article/20-ways-to-improve-your-radiotherapy-experience
(xi) https://nutritionfacts.org/video/reducing-radiation-damage-with-ginger-and-lemon-balm/ 
(xii) https://academic.oup.com/ajcn/article-abstract/109/1/69/5298154?redirectedFrom=fulltext&fbclid=IwAR3z_oC1mSn698ze9QLeXj3e4WX2s-F7et4bgy5iXrSkHtlBt9Sx722-o6U 
(xiii) http://drgeo.com/prostate-cancer-the-truth-on-dietary-supplements-during-radiation-therapy/

 

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. 

Update 27/05/19: Testosterone slows prostate cancer recurrence in low-risk patients:
https://medicalxpress.com/news/2019-03-testosterone-prostate-cancer-recurrence-low-risk.html

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. Update July 2019: I've just seen this video and wish I'd had some of this info when I started the treatment - I wouldn't have taken all those measures but would have worked harder to reduce the muscle wastage that is still not been fully restored a year after stopping hormones: https://www.youtube.com/watch?v=efza9vq-cg8

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!

Update 16/5/22 On hormones: https://www.canceractive.com/article/the-reality-of-lowered-testosterone-and-higher-oestrogen-in-men-counters-orthodox-theories-of-prostate-cancer

Notes

(i) https://newsroom.uw.edu/news/study-testosterone-therapy-does-not-raise-prostate-cancer-risk?fbclid=IwAR0iMSLZ0cIZwQeLezAMJ75KfYEhsKHXuDwFyPTuqizF4ob4HR5yHcIzSW4
(ii) https://www.lifeextension.com/magazine/2008/12/Destroying-the-Myth-about-Testosterone-Replacement-Prostate-Cancer/Page-01?fbclid=IwAR0M8UL2oUUAwJ73anIJMbIklJnHbyDiQhONwphBLpCMc7g4ic5E9Uo6-7s 
And see more at: https://www.lifeextension.com/Protocols/Cancer/Prostate-Cancer-Prevention/Page-01

(iii) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134227/
(iv) https://www.lifeextension.com/Protocols/Cancer/Prostate-Cancer-Prevention/Page-01
(v) https://www.futurity.org/prostate-erectile-dysfunction-941462/?fbclid=IwAR2R1xqzkdeqhF3nwOuLVav52H93PuwjxshOz1Pe9vNDIR5qBFRgvtemke 
(vi) https://www.canceractive.com/article/prostate-cancer-hormone-therapy-linked-to-severe-kidney-problems 
(vii) https://www.medscape.com/viewarticle/908167?nlid=127450_1521&src=WNL_mdplsfeat_190129_mscpedit_wir&uac=154060AV&spon=17&impID=1871609&faf=1#vp_2 
(viii) https://www.foxnews.com/health/how-prostate-cancer-becomes-resistant-to-treatment?fbclid=IwAR26HfKWPKJF_H1Vp2D5LQtJFVI4ZcD3eMKDlbCaYhgHF7GFQWEB8sdY09g 
(ix) https://www.sciencedaily.com/releases/2016/10/161018094123.htm 
(x) https://www.johnleemd.com/
(xi) See the huge Hamdy study: https://www.nejm.org/doi/full/10.1056/NEJMoa1606220 plus various other papers. Of interest was this one showing that Gleason 9–10 disease may derive a smaller survival benefit from ADT than Gleason 8 disease: https://www.europeanurology.com/article/S0302-2838(18)30628-6/pdf?ct=t(EMAIL_CAMPAIGN_1_30_2019_11_23)&goal=0_bc8795358a-66557320cb-199204941&mc_cid=66557320cb&mc_eid=e7e7fa69da
 

 

Why I’ve delayed treatment

In my last blog I shared why I didn’t have a prostatectomy and earlier I started the discussion about what direction I might go....I suggested in teh last blog that this next blog will pick up the story from the meeting with the oncologist...

At the oncologist appointment in January I got my MRI results and later the accompanying report. The oncologist said the PSA indicated the cancer was still active - it had gone from 5.5 in November, 2.6 in December to 9.1 in January and 8.3 in February. His recommendation was to start hormone treatment immediately for three months then have a month of radiation; the concern, as always, is that waiting can lead to cancer metastasising. 

I haven’t yet started treatment and wanted to share why I am waiting until June and another PSA test. I am fully aware that for many this might seem foolhardy, stupid or naive to some. It is not a choice I take lightly and I have spent a considerable amount of time reviewing my situation and options. It is also not a choice I am suggesting others should take; we each have to find our own way and for me that isn’t necessarily accepting the road planned by the NHS doctors.

It is also not done without fear and concerns; am I really making the best choice? Here are some of the things I have considered in deciding to delay:

1. MRI says 'no change'

MRI Jan 2091

The report, which the oncologist was fairly dismissive of, says ’no change’ compared to my previous MRI eighteen months earlier. In fact when I got the report a couple of weeks later it stated that the prostate is smaller ie 40ml where previously it was 56ml (although the ultrasound showed 40ml first time around). There is also only one unchanged focus in the left lobe, whereas before others were seen plus no pelvic adenopathy (distortion of lymph nodes); there is also no regional lymph nodes metastasis compared with 9mm diameter pelvic node before. The caveat is that there was some blurring in the scan which interfered slightly with definition. So my ‘invasive’ and ‘aggressive’ cancer is probably smaller and certainly not bigger. The treatment in Germany, change of diet, supplement regime and all the other things I am doing must be working to some extent.

Interestingly when my cancer was first diagnosed I was given a T2a by the radiologist but then it was corrected to 'definiately' a T3a. Now the rating in January was given a T2b/T3a. It is clear that it is difficult to read accurately these tests - that's just the nature of the beast! I seem to be on the borderline between a serious and less serious cancer?

2. PSA climbing. 

I have already covered that the PSA is a poor indicator; even the doctor, Richard J. Albin, who created the PSA test says: "PSA testing can’t detect prostate cancer and, more important, it can’t distinguish between the two types of prostate cancer — the one that will kill you and the one that won’t (i)."

So what causes PSA to increase? Basically prostate cancer, benign prostate enlargement (BPH), and prostate inflammation (ii). Some of us have one or two or three of those and it is worth noting that inflammation is an environment that has been shown to encourage tumour growth. Prostate cancer, usually leads to the PSA going up and doesn’t go down unless there is some form of treatment. Apparently BPH is the same, but the increase may not be so steep. Lastly inflammation causes the PSA to go up with a flareup and down as the inflammation lessens. 

Dr Daniel George, Professor of Medicine and Professor in Surgery at Duke University (iii), notes that: “there is a strong correlation between a shorter PSA doubling time—a shorter time to bone metastasis—and shorter overall survival...If doubling time is a year or longer, these are slow-growing cancers.” 

In terms of my own PSA there are indications of increases but the PSA measure has fluctuated. Is this cancer or inflammation? There is also a link between inflammation and cell death; does that include cancer cells (iv)? I hope the next PSA will give a clearer picture as to whether my PSA is rising or not.

3. Gleason questions

I talked about biopsies and Gleason scoring in a previous blog. Elsewhere I note that many, including my doctors, consider a Gleason score of 7 as ‘aggressive’ and ‘invasive’. However the more I learn, the more there are questions. Gleason 6 for many years was treated with prostatectomy or radiation and hormones. Now Active Surveillance is more usually the order of the day and many of the ‘cancers' don’t develop further. In fact there are some doctors now, who argue that it doesn’t really behave like a cancer and could just be part of the ageing process.

Dr Bert Forstmann, while in a minority amongst doctors, writes that: "Only the 15 percent or so of high-grade/high-risk prostate cancers with significant amounts of pattern (grade) 4 and or 5 disease in their Gleason score require detection and treatment as only these types of prostate cancers are potentially deadly.” He then suggests that the "intermediate-risk Gleason 7 category actually includes two very differently behaving prostate cancers; the 3+4=7 and, the 4+3=7. Importantly however, whereas the 3+4 is a low-risk cancer and tends to behave like the bogus G6 especially when it has 10 percent or less of pattern 4 disease — although the exact amount of pattern 4 to be significant is yet to be determined, the 4+3 behaves more like the high-risk Gleason 4+4 and, should be considered for treatment” (v).

So could my Gleason 3+4 be similar to a Gleason 6 and be better considered for Active Surveillance? Or should we be concerned that this is an ‘invasive’ cancer?

Update 4/05/19: Just seen interesting video re Active Surveillance and Gleason scores - see here and another here outlining some of the risks.

4. Metastasis fears

Metastasis is what we all want to avoid! I totally get NHS doctors wanting to treat me early to avoid the cancer spreading as prognosis when it spreads is considerably poorer. Indeed doctors say that there is no systemic treatments that can cure metastatic prostate cancer (see here only if you really want to read about horrors of metastasis).

My limited understanding is that high-risk prostate cancer cells basically can’t thrive outside the prostatic environment, but at some point they undergo a genetic transition called epithelial-to-mesenchymal transition (EMT), after which they can freely move throughout the body in the lymph, blood or wherever and accumulate in distant locations. I think 80% of metastasis in prostate cancers go first to the bones; hence when diagnosed with prostate cancer many doctors call for a bone scan. My scan was clear. 

Sometimes those microscopic metastases can circulate for a long time before planting themselves somewhere new. Another common place is for them to accumulate in the lymph nodes. I found this video useful in looking at the lymph system differently from many medical doctors; arguing that we should detoxify and exercise to clean out the lymph system rather than perhaps cutting the lymphs out. See Robert Morse ND: https://youtu.be/ScxGrOB1z80 

Once metastasis have appeared, there are countless micromets that you can't see in organs, the blood, the lymph and bones. Once some of the mets are large enough to be detected, there are hundreds of thousands more that are too small to be detected by any current technology. I remember reading but can’t find the quote that treatment of metastases has been compared to weeding a garden; you basically keep pulling at the dandelions until there are no more. The person quoting this said that is wrong and a better metaphor would be like plucking mushrooms from under a tree. The fungus mycelium is everywhere, and plucking at the mushrooms doesn't stop it at all. So is it right to hit what you can’t see with, for example, radiation? 

The picture is confusing. Metastasis start very slowly. We also know that eliminating the largest mets reduces PSA; this means that after treatment, we can't use PSA progress to monitor effectiveness? What does hitting a met site mean to all those other circulating mets? Yet I totally understand wishes to hit the mets to feel more in control! I’m also aware that there are benefits to hitting weight-bearing bones, which the cancer will weaken over time to prevent fractures, spinal compression, and pain.

So is there a way to see if cancers are about to metastases? A PET scan might give some indications but are not available on NHS for many of us; it also costs close to £2,000. I’ve also come across a number of tests in the alternative and complimentary world, like RGCC or Greek test but again that is close to £2,000. 

Two tests that I have done, do give some reassurances that my cancer is not metastasising:

(a) High levels of LDL and Triglyceride. Chris Woollams of CancerActive writes: "I have long noted that where prostate cancer patients send me their blood results (PSA, estradiol, oestrone, testosterone, DHT, triglyceride and cholesterol levels), as soon as the triglyceride and cholesterol levels climb, the DHT is not far behind and the cancer is coming back with a vengeance. Research supports this with a big US study showing people with higher levels of blood fat have more metastases and lowered survival times”. In January a test with my GP showed that my triglycerides were the lower end of the normal range and cholesterol has come down since being on my nutrition programme. This hopefully indicates no metastasis.

(b) Nagalase. Nagalase, full name N-acetyl-Galactosaminidase, is an enzyme in the body that helps break down sugar. A company in Stroud coordinates tests for nagalase levels in the body which are considered to help monitoring the effect of therapy in cancer and certain viral infections, including HIV infection (vi). When levels are normal, then that indicates health and the chances of developing cancer are relatively low. However, if higher that means increased tumour cell activity in your body. This is considered a harbinger for cancer. Nagalase levels can also increase in other diseases like viral infections, but this increase has mostly been described for cancer.

The GcMAFplus website writes: “...the amount of nagalase activity in the body corresponds directly to the number of cancer cells in the body as well as tumour size and amount of cancer within the body. It has been demonstrated that by measuring levels of nagalase in the bloodstream it is possible to detect the presence of cancerous lesions well below levels achievable by any other diagnostic means...In summary – Nagalase is an amazingly sensitive marker for each and every type of cancer and allows for the much earlier detection of cancerous lesions than any other known method. It causes immunodeficiency by blocking the development of macrophage activating factor and consecutive nagalase testing is a reliable indicator for tracking the effectiveness of therapeutic regimens for all cancers and  certain viral infections (vii).”

My nagalase test result came back mostly normal although one marker was below normal. That has led to an interesting look at why that might be. A further test looking at Genomic DNA from leucocytes found p-dichlorobenzene. This is a pesticide linked to cancer, specifically prostate cancer. Is this a cause or part cause of my cancer? I'm not so sure but certainbly could be a factor? That is yet another blog! Anyhow my nagalase test is another indication of no metastasis. Update 17.05.19: Interesting report looking at why Nagalase test may not be that useful: https://selfhacked.com/blog/nagalase/

5.  Current protocol

Well I’ll save the outline of this for another blog in this series, but I want to give the protocol a longer time to further impact on the cancer. As noted previously I had transurethral hyperthermia in Germany followed by six months of hormones that finished last summer. Since last Christmas I am on a new protocol which includes diet and a range of supplements; these have been recommended following a series of blood tests to enhance my immune system and also hopefully impact on the cancer. Update 5/04/19: see protocol here.

6. NHS Treatment

I want to cover some of my first thoughts regarding the hormone and radiation treatment being offered to me by the NHS. They are big serious treatments and not at all straightforward - and of course don't necessarilly get at teh cause of cancer. So concerns about them also lead to me wanting to see if the protocol I am undertaking will further reduce my tumour. I’ll save these for the next two blogs. Update 4/04/19: see more re hormones here and more re radiotherapy here.

Lastly I have been faced with a number of family challenges with the death of my father and my partners father and my mum having a very serious operation. All this and a number of other challenges hasn’t left me with much headspace to plan and also left me reluctant to start treatments that cause so much fatigue and impact on the body.

Notes:

(i) https://healthbeatblog.com/2010/03/the-doctor-who-invented-psa-test-calls-it-a-profitdriven-public-health-disaster-why-this-is-good-new/
(ii) See more re inflammation: https://www.pcf.org/c/infection-and-prostate-cancer/?fbclid=IwAR2eLHmRaf378Nklc2l1I0C5x5SchmBDEDMuXr1wh63nmHVrwpnVtbyzYX4
(iii) https://www.prostatepedia.net/blogs/prostatepedia/dr-daniel-george-on-psa-recurrence?goal=0_bc8795358a-d7cb05f7bc-199204941&mc_cid=d7cb05f7bc&mc_eid=e7e7fa69da 
(iv) https://mmrjournal.biomedcentral.com/track/pdf/10.1186/s40779-015-0039-0 
(v) https://medium.com/@bvorstman/is-psa-testing-for-prostate-cancer-bad-health-advice-7199618e56c5?fbclid=IwAR1vufT01HSsN-ShZR5KX-d7cCnVw1KkhgRqvpI4UoMtclTXav7vNGwzz9E 
(vi) https://www.invivoclinical.co.uk/products---services/Lab-Diagnostics/Nagalase-Activity
(vii) https://www.gcmafplus.com/about/articles/what-nagalase-how-does-it-affect-cancer

See small study with patients who have prostate cancer: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2510818/