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Surveillance

User
Posted 18 Feb 2016 at 20:11
 

 

In late 2014, at age 58, I was referred to a Urology Specialist by my doctor, ( I had mentioned to him that I felt the need to pee more - sometimes urgently, and that my Erectile Function was diminished ). The urologist arranged an MRI scan which revealed "areas of suspicion" This was followed with a biopsy which confirmed the presence of cancer ( present in 7 out of 12 samples taken ). Surgery to remove the prostate was recommended, and a date was set. I was advised that patients can often suffer from incontinence and impotence. Investigating this further I began to get cold feet and looked into alternative treatments for Prostate Cancer eg Ultrasound, Radiotherapy, brachytherapy.  The one I was most attracted to was HIFU. The HIFU team did their own ultrasound and conducted a second biopsy which revealed evidence of cancer on the other side of my prostate and therefore deemed me unsuitable for HIFU.

 

I began to accept that an RP was inevitable.

 

Meanwhile I embarked on a diet regime designed to combat cancer. This involved some changes, and some shopping around for hitherto unfamiliar foods and supplements. I  lost weight very quickly and started to feel more energised. I began walking longer distances too, and perhaps surprisingly didn't miss my old less healthy diet. I also noticed that my need to pee was greatly reduced, and that my erections were improved,my PSA fell slightly ( from 5.8) to 5.2.

 

As the date for surgery approached I felt a sense of panic, and made an appointment with my specialist. I told him about my new lifestyle and requested a further biopsy.  I sensed he was a little sceptical, but he agreed to do so. This time 24 samples were taken of which only 4 were positive and had lower levels of cancer present in them.

 

With these new results, and that in his opinion I am "in good shape", he put me on surveillance ( bi-annual blood tests to monitor PSA) and downgraded me to intermediate risk. Meanwhile I will continue with my healthier diet and lifestyle which will hopefully keep the cancer at bay. 

 

Being told you have Prostate Cancer is alarming and the first instinct is "cut it out of me!",  however I'm pleased that I paused and looked at the various options. I'm grateful for the help of people on this forum who never pushed or peached but carefully explained their experience. 

 

I am in danger of thinking that PC is an episode that's behind me, when of course I still have it. It also feels a little odd that having been so closely examined and monitored I am now relatively unsupervised: "Make an appointment to see me in 12 months time" with a PSA test recommended at the 6 month point.

 

The diet and exercise helped me to regain some control and self esteem and possibly also avoided other health issues associated with being an overweight middle-aged male.  Ironically perhaps I have never felt or looked healthier.

 

 

This experience has made me think more about mortality and the sometimes tricky path we all tread. Here's to you all. Good luck and good health. 
User
Posted 23 Feb 2016 at 12:27

Dave and Leila,

"We have no dairy, no red meat, no eggs, very limited sugar, and no processed foods. He is also taking turmeric, Pomi T, green tea and daily juicing of fruits and veg...and he has the occasional pint"

Leila - I'm doing more or less the same thing.


Here are few specifics:

Supplements

I take Immiflex Beta Glucans
Chlorella
Vitamin C
Milk Thistle and Saw palmetto drops in water twice a day.

I also take two bitter apricot kernels once a day.

Juice

Granny smith apples, celery, beetroot, parsley, kale, lemon, cabbage, ginger, turmeric are all favourites, to which we add spirulina and wheatgrass powder*

( * we're growing wheat grass too now, seeds available on Amazon- you'll need a masticating juicer to extract the juice however and for a clump of grass you only get a few drops!)

Then porridge ( gluten free ) mixed with quinoa, with pumpkin seeds, ginger, turmeric root, berries, brazil and walnuts. We also pour on some Udo Omega 3-6-9 oil.


The rest of the day has a bit more latitude but is pretty much meat, gluten and caffeine free.

Other stuff.

We bought an alkalising water jug ( to lower acidity ).

1 tsp of Maple syrup and baking powder twice a day.
(1 part baking powder with 3 part maple syrup). Warm the maple syrup over a low heat and add the baking soda. Only heat the maple syrup enough that the baking soda will dissolve. Stir for about 5 minutes.
This explains the principle. http://cancerres.aacrjournals.org/content/69/6/2260.abstract

Sunshine.

Sleep.

Positive thinking:
A friend who survived testicular cancer recommended I repeat the mantra that helped him
"I am happy. I am healthy"

Colonic irrigation ( ...I know )
To wash out toxins.


Green tea.

And after all of that... i think we've earned the occasional pint.

( but don't eat the peanuts! )

Good health,

longshoreman

User
Posted 18 Feb 2016 at 21:53

Hi Longshoreman, good to see that you are still doing well.

Just a note of caution - I hope that you are offered more than just a blood test each year? The NICE guidelines are that proper active surveillance should include 6 monthly PSA test AND an annual scan and DRE. We didn't know that and my father-in-law was happy on AS just with a regular PSA test - unfortunately it was realised too late that the cancer had spread without any PSA rise.

Apart from that, AS was absolutely the right choice for him and you have my best wishes

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Feb 2016 at 22:16

Glad your AS is going well for you Longshoreman and I really hope that it continues to be a success.

All the best to you
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 18 Feb 2016 at 22:39

Pleased your diet and exercise regime has worked well for you. It goes to show one can never predict how cancer will act or react. ROB, a long standing member who sadly passed away not so long ago, followed the most restrictive and strict diet and was convinced this helped extend his life.

Barry
User
Posted 19 Feb 2016 at 00:45

Hi Paul,

Well done.

The BMA’s British Medical Journal in 2014 said of PSA screening ‘…some men may benefit from screening, many more are harmed by testing and the cascade of diagnostic and treatment related events that follow.’

Speaking as someone who has spent 8 years on that cascade, anyone who has the botttle to defy the doctors and put off treatment untill they have explored all options is a true hero.

I would love to know the details of your diet and exercise regime?

:)

Dave  

User
Posted 22 Feb 2016 at 15:38


Hi Longshoreman,

In common with Dave I'm another long term surveillance type with various complications, and so far apparently getting away without too much deterioration over several years. After 4 saturation biopsies and 90 cores, yet another biopsy looming - and I've always wondered whether repeated biopsies on that scale might carry a greater risk than the underlying condition (potential for so-called 'needle-tracking' etc.).

Seems to be a much more enlightened attitude to AS gaining ground now, not least a consequence of much more screening-based testing and diagnosis, and the increasing success of education and general awareness of PCa . Many of those on the forum would still take the line that eradication at all costs should be the only objective and that 'side-effects' are just that - and not to be seen a serious consideration in context of a potentially terminal disease. It all depends upon personal experience and quite understandable that some seriously affected people (or their loved ones) might be aghast that others seem to be taking it all too lightly.

The issue as always is how to balance the stark risk of death against potentially severe and debilitating consequences of radical treatment, which will be life-changing for many - not adequately described as mere 'side-effects'. Someone once said that where death might well be the side-effect of not being actively treated, the correct action was a no-brainer ... but it's always a question of assigning probabilities to the outcomes each side. The disease has a very wide spectrum all the way from pussy-cat to tiger and the uncertainties associated with progression risk are still not well researched.

Always a personal decision, nobody should be regarded as right or wrong - nor allow themselves to be unduly swayed by the beliefs of others - and the best philosophy to adopt is that whatever you decide, will have been the best solution for you.

All very best / David

'It couldn't possibly happen to me....'
User
Posted 23 Feb 2016 at 13:54

Hi Paul,

Your diet looks great.

I am not an expert on the dietary front, and I am sure someone will correct me if I am wrong, but I am sure somewhere in the past there have been warnings about PCa sufferers taking Saw Palmetto.

As I recall the suggestion was that Saw palmetto is for guys with benign BHP, and that those with PCa should avoid it because it surpresses PSA readings and is therefore too risky.

But as I say, that was some years ago and I am sure others are better informed.

:)

Dave 

User
Posted 23 Feb 2016 at 16:27

Sounds like a nice life you lead!
The colonic is strictly optional.

Show Most Thanked Posts
User
Posted 18 Feb 2016 at 21:53

Hi Longshoreman, good to see that you are still doing well.

Just a note of caution - I hope that you are offered more than just a blood test each year? The NICE guidelines are that proper active surveillance should include 6 monthly PSA test AND an annual scan and DRE. We didn't know that and my father-in-law was happy on AS just with a regular PSA test - unfortunately it was realised too late that the cancer had spread without any PSA rise.

Apart from that, AS was absolutely the right choice for him and you have my best wishes

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Feb 2016 at 22:16

Glad your AS is going well for you Longshoreman and I really hope that it continues to be a success.

All the best to you
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 18 Feb 2016 at 22:39

Pleased your diet and exercise regime has worked well for you. It goes to show one can never predict how cancer will act or react. ROB, a long standing member who sadly passed away not so long ago, followed the most restrictive and strict diet and was convinced this helped extend his life.

Barry
User
Posted 19 Feb 2016 at 00:45

Hi Paul,

Well done.

The BMA’s British Medical Journal in 2014 said of PSA screening ‘…some men may benefit from screening, many more are harmed by testing and the cascade of diagnostic and treatment related events that follow.’

Speaking as someone who has spent 8 years on that cascade, anyone who has the botttle to defy the doctors and put off treatment untill they have explored all options is a true hero.

I would love to know the details of your diet and exercise regime?

:)

Dave  

User
Posted 22 Feb 2016 at 15:38


Hi Longshoreman,

In common with Dave I'm another long term surveillance type with various complications, and so far apparently getting away without too much deterioration over several years. After 4 saturation biopsies and 90 cores, yet another biopsy looming - and I've always wondered whether repeated biopsies on that scale might carry a greater risk than the underlying condition (potential for so-called 'needle-tracking' etc.).

Seems to be a much more enlightened attitude to AS gaining ground now, not least a consequence of much more screening-based testing and diagnosis, and the increasing success of education and general awareness of PCa . Many of those on the forum would still take the line that eradication at all costs should be the only objective and that 'side-effects' are just that - and not to be seen a serious consideration in context of a potentially terminal disease. It all depends upon personal experience and quite understandable that some seriously affected people (or their loved ones) might be aghast that others seem to be taking it all too lightly.

The issue as always is how to balance the stark risk of death against potentially severe and debilitating consequences of radical treatment, which will be life-changing for many - not adequately described as mere 'side-effects'. Someone once said that where death might well be the side-effect of not being actively treated, the correct action was a no-brainer ... but it's always a question of assigning probabilities to the outcomes each side. The disease has a very wide spectrum all the way from pussy-cat to tiger and the uncertainties associated with progression risk are still not well researched.

Always a personal decision, nobody should be regarded as right or wrong - nor allow themselves to be unduly swayed by the beliefs of others - and the best philosophy to adopt is that whatever you decide, will have been the best solution for you.

All very best / David

'It couldn't possibly happen to me....'
User
Posted 23 Feb 2016 at 10:32

Thanks all, for your sharing your experience and wisdom.

After posting last week I went for a PSA test ( well ahead of the one scheduled at 6 months) .

I rang the doctors surgery yesterday, anxious to hear the results:
Receptionist "PSA normal, no action required."
Me "Could you tell me the exact figure please? "
The receptionist replied "Er..will it mean anything to you then? "


It was 4.3, my lowest to date.
That means quite a lot.

Still not out of the woods! But will try not to get spooked by shadows.

Dave - I will post again about diet.


Best wishes

Longshoreman


User
Posted 23 Feb 2016 at 10:53

Hi Longshoreman, Could you tell me what dietary regime you have undertaken please. My OH was diagnosed last autumn and we are really committed to ensuring he has the best diet. We have no dairy, no red meat, no eggs, very limited sugar, and no processed foods. He is also taking turmeric, Pomi T, green tea and daily juicing of fruits and veg. We have a smallholding so exercise  is not an issue.

 

We drink wine, and he has the occasional pint, within the guidelines....

He is Gleason 9, and his PSA has gone down from 8.5 to 2.5 he is booked in for  HD brachytherapy soon, and follow up radio therapy. 

Thanks Leila 

User
Posted 23 Feb 2016 at 12:27

Dave and Leila,

"We have no dairy, no red meat, no eggs, very limited sugar, and no processed foods. He is also taking turmeric, Pomi T, green tea and daily juicing of fruits and veg...and he has the occasional pint"

Leila - I'm doing more or less the same thing.


Here are few specifics:

Supplements

I take Immiflex Beta Glucans
Chlorella
Vitamin C
Milk Thistle and Saw palmetto drops in water twice a day.

I also take two bitter apricot kernels once a day.

Juice

Granny smith apples, celery, beetroot, parsley, kale, lemon, cabbage, ginger, turmeric are all favourites, to which we add spirulina and wheatgrass powder*

( * we're growing wheat grass too now, seeds available on Amazon- you'll need a masticating juicer to extract the juice however and for a clump of grass you only get a few drops!)

Then porridge ( gluten free ) mixed with quinoa, with pumpkin seeds, ginger, turmeric root, berries, brazil and walnuts. We also pour on some Udo Omega 3-6-9 oil.


The rest of the day has a bit more latitude but is pretty much meat, gluten and caffeine free.

Other stuff.

We bought an alkalising water jug ( to lower acidity ).

1 tsp of Maple syrup and baking powder twice a day.
(1 part baking powder with 3 part maple syrup). Warm the maple syrup over a low heat and add the baking soda. Only heat the maple syrup enough that the baking soda will dissolve. Stir for about 5 minutes.
This explains the principle. http://cancerres.aacrjournals.org/content/69/6/2260.abstract

Sunshine.

Sleep.

Positive thinking:
A friend who survived testicular cancer recommended I repeat the mantra that helped him
"I am happy. I am healthy"

Colonic irrigation ( ...I know )
To wash out toxins.


Green tea.

And after all of that... i think we've earned the occasional pint.

( but don't eat the peanuts! )

Good health,

longshoreman

User
Posted 23 Feb 2016 at 13:54

Hi Paul,

Your diet looks great.

I am not an expert on the dietary front, and I am sure someone will correct me if I am wrong, but I am sure somewhere in the past there have been warnings about PCa sufferers taking Saw Palmetto.

As I recall the suggestion was that Saw palmetto is for guys with benign BHP, and that those with PCa should avoid it because it surpresses PSA readings and is therefore too risky.

But as I say, that was some years ago and I am sure others are better informed.

:)

Dave 

User
Posted 23 Feb 2016 at 15:15

Thanks very much for the dietary advice, we do seem to have similar ideas. Though somehow i can't see hime taking to colonic irrigation with too much glee, I have printed out your posting and left it on his desk.No response as yet, or shrieks of 'you must  be joking'.We grow most of our own organic veg, and don't eat processed foods. Until the diagnosis my husband ate cheeser snd he loves yoghurt, but he says he'd rather give living his best shot, so diet changes are easy.Thanks so much, please let me know if you have any more tips.

Oh, we make our own wines from a kit and beer  but from scratch no beer its.. though we don't drink it much these days.

All the best & keep healthy.

 

Leila.

User
Posted 23 Feb 2016 at 16:27

Sounds like a nice life you lead!
The colonic is strictly optional.

User
Posted 23 Feb 2016 at 16:42

Hi, Longshoreman

How quickly did your PSA go from 5.8 to 5.2 and then to 4.3

Thanks

 
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