Saturday 25 April 2020

Wigwam Cancer Support Forum online 'Dealing with Fear'

As part of the nationwide launch of Wigwam Support groups the Yes to Life charity is trialling its first Wigwam Cancer Support Forum - with Jessica Richards ‘Dealing with Fear - the most deadly virus of all.’ 

In Stroud we have ten members in our Wigwam group that meets every month - we are one of four groups nationally and I'm heoping we can extend Wigwams to more places.

Here's the description: "In these volatile times, in which cancer patients have been told their treatments are on hold for at least three months, many are understandably asking similar questions and facing common fears. Jessica Richards knows first-hand what it’s like to be faced with a life and death situation, with having to make choices against the odds, whilst maintaining mental discipline and presence of mind.


"Diagnosed with cancer in 2007, with a below average chance of surviving beyond 5 years with medical treatment, and no chance of survival without, Jessica decided on a radical route to manage her illness, with little or no support. 13 years on she is a testament to her choices and ability to remain present and in possession of self in the midst of condemnation and ridicule from the outside world.

Some of members of Stroud Wigwam
"For many years Jessica has been a go-to volunteer for charities such as Yes to Life and CancerActive, as well as for providers such as Cancer Options and the Vision of Hope Clinic, and many cancer groups and individuals.

"Jessica approached Robin Daly of Yes to Life with the idea of an online Q&A forum to address the most pressing questions from individuals in these most challenging times, as a way to reach out to as many as possible. She can help with ways to develop the mental discipline to remain present  and in possession of self, with developing and using the placebo effect, and she will share her practical experience of how to take control of your situation and utilise this opportunity to enhance your immune system, mental attitude and wellbeing.

"Jessica Richards is an expert in personal Transformation and Leadership Mentoring. Using her unique “Changing the Groundhog Day’ approach she breaks the unconscious patterns of self-limiting belief programmes which dominate and create most of our experiences. 

"Jessica has been in practice for 36 years – the last 29 being in Harley Street. After 36 years and thousands of hours working with individuals and groups, she helps others achieve significant transformation in both their personal and professional lives. She has always pointed to mental attitude as being the no1 asset in managing any situation, no matter how frightening it may appear. Her practical approach and experience teaches how to develop and maintain the mental discipline to stay focussed and present, and avoid becoming a victim of fear.

"Her book The Topic of Cancer is selling around the world and she is a contributing author to The Cancer Revolution by Patricia Peat for Yes to Life".

Update; 25/04/20: You can listen to this talk by registering with Yes to Life's Wigwam Support Groups: https://www.wigwam.org.uk/

I'll be there....4 to 4.45pm on 29th April British Summer Time - Participants are anonymous. Questions are via the chat function on zoom or by email in advance. Register at: https://bit.ly/WIGWAMforum29-4-20

Friday 17 April 2020

Finished radiotherapy; should I continue hormones?

Ringing bell at completion of radiotherapy
 I, like many, have had a rough ride on the hormones the two times I have taken them - see previous blog here (i) and here (ii) - so have been wondering if I need to extend them beyond the end of my radiotherapy treatment. Well, for me it hinges to some extent on my diagnosis; am I high risk, as the oncologists have said or intermediate risk? Click on tab below to see other blog posts about radiotherapy, my experiences and how I managed.

Intermediate or high risk? 

Well, there are various ways that the risk has been defined but one of the most widely used is the one developed by the National Comprehensive Cancer Network (NCCN), a not-for-profit alliance of leading cancer centers. My understanding that NCCN assess as follows:

- Intermediate-risk: T2b-T2c or Gleason score = 7 or PSA 10-20μg/L.

- High-risk: cT3a, Gleason score 8-10 or PSA >20μg/L

Other organisations are similar. I was T3a with Gleason 7 (3+4) and PSA once over 20 but more recently over 10. The 3a extraprostatic extension is without seminal vesicle involvement. See great article re Gleason at: https://sperlingprostatecenter.com/gleason-grade-group-system/

The T3a puts me clearly in High Risk which my previous oncologist liked to stress at what seemed like every opportunity - was probably his concerns when I was talking about alternatives to radiotherapy. However, while my first MRI in July 2017 labelled me T3a, the MRI in January 2019, following the treatment in Germany (see about transuretheral hyperthermia here iii), reported T2c/T3a. Now put this latter figure with my Gleason and PSA and I am clearly borderline.

Update 22/5/22 - see this blog re riding the bell - a view that resonates with me: https://blogs.bmj.com/bmj/2019/06/04/jo-taylor-its-time-to-call-time-on-the-end-of-treatment-bell/


What treatment is recommended?

I have heard that taking the hormones after radiotherapy can increase 15 year survival by 10% or more. However when I came to research it, it was not so straight forward. My current oncologist kindly supplied me with a great 18 page summary of research into hormones and radiotherapy with links to the research itself (iv). It was quite a read! And not always so easy to unpick. I also read a number of other reports by the NCCP (v) - and learnt that level one studies are the most thorough, level two the next then level three (vi). Here are some of my findings from those reports that resonated with my situation;

High-Risk Prostate Cancer - 
'Radiotherapy treatment options for patients with high-risk prostate cancer are EBRT in combination with hormonal therapy; EBRT and brachytherapy combinations; EBRT in combination with brachytherapy and hormonal therapy. (Consistent level 2 or 3 studies; or Extrapolations from level 1 studies). A combination of radiation therapy and consideration for long term hormone androgen deprivation therapy (level 1).'

Intermediate-Risk Prostate Cancer - 'All radiotherapy treatment options are appropriate (EBRT and/or brachytherapy) to be considered for patients with intermediate-risk prostate cancer. (Consistent level 2 or 3 studies; or Extrapolations from level 1 studies). Hormonal therapy should be considered in addition to EBRT. (Level 1 study). Androgen; deprivation therapy for four to six months  should be  considered in conjunction with EBRT. A pooled analysis suggests that a duration of six months is optimal. (Level 1 study).'

MRI Scan Jan 2019

However the research seems to contradict itself at times. In possible contrast to the above, the Radiation Therapy Oncology Group Protocol 92-02 trial of T2-4 men they found that at 20 years, long-term ADT significantly increased 15-year disease-free survival with 15.7 versus 10.0 percent with short-term 4 month ADT (vii). Meanwhile a RADAR study of 1071 men showed at 10.4 years that an 18 month duration of ADT was associated with a significant reduction in prostate cancer-specific mortality compared to 6 months ie 9.7 versus 13.3 percent (viii). 

Also in the report it notes: 'ADT has an established role in conjunction with EBRT for men with regionally localized high-risk prostate cancer, although its role is less well defined for those with intermediate-risk disease. EBRT for high-/very high-risk disease should always be administered with long-term ADT. Patients with unfavorable intermediate-risk disease can be treated with RT alone (EBRT with or without brachytherapy), but for most patients, we suggest combined RT plus ADT. Our approach is consistent with year 2018 ASCO guidelines, which advocate ADT in conjunction with EBRT (with or without brachytherapy) for men with high- or very high-risk prostate cancer but do not provide guidance on this issue for intermediate-risk disease. Consensus-based guidelines from the NCCN advocate ADT in conjunction with EBRT for men with high-risk and unfavorable  intermediate-risk disease but not for those with favorable intermediate-risk disease'

So there is a favorable and an unfavorable intermediate risk! The former possibly doing worse with ADT while the latter group doing better with ADT (ix). One report in 2016 writes: "The role and duration of ADT, however, remains a controversial issue (x)”


Indeed! More research is needed! Looking at my tests it is hard to see where I fit, as I could fall into either category although possibly more likely the less favorable; however without further tests I won’t know for sure - and I want to avoid another biopsy - see my blog (xi). Saying no now doesn’t mean I won’t use them again if needed. I am also aware that the longer you take them the less effective they are so maybe keeping them for a possible need in the future might be good? Sadly I can’t find research to indicate whether or not this might be true!
 
Update 9/09/20: well here's some research that seems to confirm my suspicions: https://www.prostatecancer.news/2020/09/adding-adt-to-external-beam-radiation.html


So I have to sit with not knowing for sure what might be best? Or do I? 

The research is not so clear but other factors also play a part - my reaction to the hormones is very strong with many side effects that significantly adversely affect my wellbeing. However key in all this for me, is intuition. See my blog from a couple of months ago here (xii). There was and is a deep knowing, that more hormones would not be best for me. Of course I discussed all this with my oncologist and she was great at listening and agreed that I was borderline. So it's no to more hormones after the radiotherapy. 

Of course I am not free for a while - the hormones do remain in the body for some months, so while my last hormone treatment of three months finished on 26th February it will be a while before I stop having those symptoms. In fact at the moment they seem to be worse as my body perhaps struggles to regulate itself?


PSA bounce and the 'nadir'? 

Bounces are periodic fluctuations to the PSA that can occur years after treatment and are not to worry about. They are seen as more than 0.2mg/nl increase but less than 2.0 ng/ml above the lowest level (nadir) it had reached thus far, followed by a decrease to as low or lower than the previous nadir - see blog to understand more at: https://pcnrv.blogspot.com/2018/03/bounces-after-primary-radiation-therapy.html

Following radiotherapy, a recurrence of prostate cancer can be defined as a PSA value of 2μg/L above the nadir after treatment. I read that it is important not to misinterpret PSA bounce as a biochemical recurrence following radiation. This phenomena tends to occur within one to two years after radiotherapy. The PSA nadir is the absolute lowest level that the PSA drops after treatment (and can take a number of years to reach). The PSA nadir can be important in further diagnosis and treatment.

Research from 1997 notes (xiii): "For possible cure of prostate cancer with radiotherapy, a prostate-specific antigen nadir of 0.5 ng/mL or less should be achieved. With this nadir level, disease freedom after irradiation is defined as achievement and maintenance of a nadir of 0.5 ng/mL or less. A nadir greater than 0.5 ng/mL or subsequent increase above 0.5 ng/mL is defined as irradiation treatment failure. This definition may help resolve the controversy about the potential for cure of prostate cancer by irradiation”.

While 2017 research notes (xiv): "Nadir PSA at 0.06 is a strong independent predictor of biochemical disease free survival (BFS) in patients with intermediate or high risk prostate cancer treated by definitive EBRT and ADT. PSA levels after ADT and EBRT were typically obtained every 4 months the first 2 years and every 6 months thereafter. These values were recorded, and the lowest PSA value attained was considered as the nadir PSA.”

Useful research update 5.6.23: PSA Nadir 6 Months After Radiotherapy Is Strongly Prognostic of Long-Term Survival in Patients With Localized Prostate Cancer: https://dailynews.ascopubs.org/do/psa-nadir-6-months-after-radiotherapy-strongly-prognostic-long-term-survival-patients?


Where am I now?

Well a lot of the docs say now is the time to wait and see if the radiotherapy has worked. That doesn’t feel right to me. I’ve said before it makes no sense to me if all we do is remove the cancer - surely what caused it could still be there? I’ve also written lots about mind-body including the Bristol Whole Life Approach used at Penny Brohn to maximise our health (xv). I know that that approach will give cancer the least likely chance of it returning. So now is the time to continue to develop my protocol again - since diagnosis I have been working at many aspects including diet, exercise,  saunas and more. All that will continue and I’ve adjusted my supplement protocol in recent weeks - see below for latest. As noted previously this is always under review as I stop some, restart others and introduce new elements.


Current supplements (that I’ve written about previously; click on tag or use search box):

Probiotic x1 (where poss taken with raw veg)
Vitamin D 5,000IUs (less when we’ve had so much sun)
Turmeric x2 tablets plus some in food
Selenium x1
Milk Thistle 15 drops  x3
Solidago (just finishing)
Magnesium Citrate
Zinc
Chlorella
Green tea
Fish oil
Boron
Lecithin
Iodine drop
Boswelia
Immiflex (just restarted a course as want to keep immune system good at mo)

Just stopped these elements as bladder is so much better:
Uva Ursi
Echinacea


Poem book; different reactions to diagnosis
Side effects

As I write this it is some seven weeks since I finished radiotherapy ands I’m doing well; only slight awareness of rectal inflammation discomfort, am only going twice to the loo at night compared to eight times before so a significant improvement in the bladder inflammation, hormones are still impacting with hot flushes, muscle wastage and fatigue - of course hard to tell what is causing fatigue at the moment - is it the hormones or radiotherapy? A friend was off work for four months following his treatment. Or is it the current situation we all find ourselves in; such strange times causing stress in new ways as we face fears, new challenges at work or home and in our communities? Certainly I’m not sleeping as well at the moment despite not being woken by my bladder.


What next?

Well I want to review where I am at and look more at hormones - this is a topic I’ve come to several times but there are many questions - and am still struggling to understand! A long while back my oestrogen levels were tested privately and were high. I embarked on reducing this with supplements like indole 3 carbinol and Vitamin D and others that supports the liver.

You see as Chris Woollams writes:  "studies from Australia, Singapore, Japan and MD Anderson in Texas, which all pointed in the same direction: Namely that as a man ages, his oestrogen levels increase, while his testosterone levels decline. And this leads to an era of higher prostate cancer risk. Despite all this, current orthodox medical treatment for prostate cancer still aims to cut nasty old testosterone". You can read more in his article at: https://www.canceractive.com/article/the-reality-of-lowered-testosterone-and-higher-oestrogen-in-men-counters-orthodox-theories-of-prostate-cancer

You can also see what might help in this other article by Chris Woollams:  https://www.canceractive.com/article/natural-aromatase-inhibitors

And an interesting video looking at how DHT is protective against prostate cancer - this seems to go against some of the orthodox medical views but supports Chris Woollams approach: https://www.youtube.com/watch?v=69z5igxLokM

Update 24/01/22 An interesting piece of research suggests some of these new hormone treatments increase chances of depression and we know that depression is associated with worse cancer outcomes and worse survival rateshttps://www.canceractive.com/article/depression-may%20double%20with%20new%20prostate%20drugs

Notes
(ii) https://myunexpectedguide.blogspot.com/2020/03/second-round-of-hormone-treatment.html 
(iii) https://myunexpectedguide.blogspot.com/2019/06/transurethral-hyperthermia-my-experience.html 
(iv) From: Initial management of regionally localized intermediate-, high-, and very high-risk prostate cancer and those with clinical lymph node involvement (Feb 2020)
https://www.uptodate.com/contents/initial-management-of-regionally-localized-intermediate-high-and-very-high-risk-prostate-cancer-and-those-with-clinical-lymph-node-involvement

 

Monday 6 April 2020

Learning from the coronavirus crisis

Sophie talking at Trew Fields

Sophie Sabbage, author of 'The Cancer Whisperer' and renowned authority on overcoming fear of illness, has just launched a 10 week course for $149 to look at how we can 'shift fear, loneliness and grief’ and 'lead us to experience the greatest connection we have ever know’. I have been on a one day course with Sophie and she is certainly one of the most experienced facilitators that I’ve come across. I’ve enrolled on the course which starts this week. See Sophie’s video and more at: https://www.moretolife.academy/

The Science of Well-Being

Another course starting this week is by Yale University with Coursera; it is entitled 'The Science of Well-Being’ and has nearly two million people signed up. It claims to be one of the most highly rated and popular online courses. In the 20 hour course over 10 weeks, 'Professor Laurie Santos reveals misconceptions about happiness, annoying features of the mind that lead us to think the way we do, and the research that can help us change. You will ultimately be prepared to successfully incorporate a specific wellness activity into your life’. And due to coronavirus they are currently letting folk sign up for free. See more at: https://www.coursera.org/learn/the-science-of-well-being

Think Resilience

This is a self-directed version of the Think Resilience course and gives you immediate access to 22 video lessons (about four hours in total) and lets you work at your own pace. You’ll also have access to supplemental reading material, additional resources, section quizzes, and a discussion forum where you can interact with other students. Normally $20 but free at the moment. I like the idea of this course as it looks specifically at building community resilience - we know community is essential for our health and listed as one of the eight key elements of the Bristol Whole Life Approach at Penny Brohn. See: https://education.resilience.org/product/self-directed-course/

Card spotted a few weeks ago
Warning

I loved the poem below as it reminds us that we don’t have to fill this strange time with doing life changing stuff. I’ve heard too many folk seem to think this is the time for personal development work. Well maybe for some. For me the Sophie Sabbage course has come at the right time and is hopefully a great way to go deeper into her work. However we should not forget as Rebecca Solnit writes (i): 'When you’re recovering from an illness, pregnant or young and undergoing a growth spurt, you’re working all the time, especially when it appears you’re doing nothing. Your body is growing, healing, making, transforming and labouring below the threshold of consciousness’. 

Mary Oliver for Corona Times
(Thoughts after the poem Wild Geese) by Adrie Kusserow

You do not have to become totally zen,
You do not have to use this isolation to make your marriage better,
your body slimmer, your children more creative.
You do not have to “maximize its benefits”
By using this time to work even more,
write the bestselling Corona Diaries,
Or preach the gospel of ZOOM.
You only have to let the soft animal of your body unlearn
everything capitalism has taught you,
(That you are nothing if not productive,
That consumption equals happiness,
That the most important unit is the single self.
That you are at your best when you resemble an efficient machine).
Tell me about your fictions, the ones you’ve been sold,
the ones you sheepishly sell others,
and I will tell you mine.
Meanwhile the world as we know it is crumbling.
Meanwhile the virus is moving over the hills,
suburbs, cities, farms and trailer parks.
Meanwhile The News barks at you, harsh and addicting,
Until the push of the remote leaves a dead quiet behind,
a loneliness that hums as the heart anchors.
Meanwhile a new paradigm is composing itself in our minds,
Could birth at any moment if we clear some space
From the same tired hegemonies.
Remember, you are allowed to be still as the white birch,
Stunned by what you see,
Uselessly shedding your coils of paper skins
Because it gives you something to do.
Meanwhile, on top of everything else you are facing,
Do not let capitalism coopt this moment,
laying its whistles and train tracks across your weary heart.
Even if your life looks nothing like the Sabbath,
Your stress boa-constricting your chest.
Know that your ancy kids, your terror, your shifting moods,
Your need for a drink have every right to be here,
And are no less sacred than a yoga class.
Whoever you are, no matter how broken,
the world still has a place for you, calls to you over and over
announcing your place as legit, as forgiven,
even if you fail and fail and fail again.
remind yourself over and over,
all the swells and storms that run through your long tired body
all have their place here, now in this world.
It is your birthright to be held
deeply, warmly in the family of things,
not one cell left in the cold.


Notes
 

(i) https://www.theguardian.com/world/2020/apr/07/what-coronavirus-can-teach-us-about-hope-rebecca-solnit

My story featured on Penny Brohn website

Well actually the post on their website is only a very small part of the story but happy to share especially as it will be used in March to ...