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Chance of recurrence?

User
Posted 30 October 2017 13:38:28(UTC)
I,m new to this forum so hello all.

I had a robotic RP Jan 17 and the histology showed focal extracapsular extension. Gleeson 3+4. Negative margins and lymph nodes not checked.Stage T3a. Has anyone had info from their Urologist re chance of recurance? I read on the web anything from 50% to 80%.

Also I read a lot about diet and it seems very likely that dairy, red meat and saturated fat should be avoided but has any of your Urologists or Oncologists actually recomended any diet changes?

Thanks in advance

Willk
User
Posted 30 October 2017 14:34:38(UTC)

Welcome!

I'm also Stage T3a N0 M0; but I had standard radiotherapy (April May 2015).

I was unable to pin my consultant down to specifics, but my reading suggests about 50% risk for 'advanced local' disease. And of course there's no time limit on recurrence.

Avoiding dairy, red meat and saturated fat 20 years ago might have been a good move in PCa prevention; but doing it now will help your heart and greatly reduce the risk of bowel cancer. I don't think there's a scintilla of evidence that it will affect an existing cancer (why would it?).

Good Luck!

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
User
Posted 30 October 2017 14:52:27(UTC)

Re diet, have a look at the book Lifestyle after Cancer, it’s written by my Onco, he also had a hand in producing the capsules POMI-T


Chris.

User
Posted 30 October 2017 15:14:21(UTC)

Sorry guys, there is not a scintilla of medically acceptable evidence that diet makes any difference to PCa. This also applies to pomegranate juice and products based upon it, whether supported by a UK consultant or not.

So far as heart health is concerned, there is increasing though not conclusive evidence that dairy products, notably butter, have been much maligned. Regarding red meat, this certainly has a place in a balanced diet. Avoiding it in total is unjustified. The golden rule is adopt a balanced diet and regular exercise to keep your heart healthy and thus make it more likely that you fall prey to some other ailment than heart disease or PCa in the fullness of time.

About every month or so, someone writes on here's though there is a magic formula involving supplements or other dietary fads which makes a difference. There isn't, except as a means of enriching snake oil salesmen and impoverishing PCa survivors.

I write as an innocent who went through this loop ten years ago when newly diagnosed, in a sense of desperation, before I did my research and discovered that I was wasting my money. Instead I lost weight, adjusted my diet and exercised regularly with the help of an energetic dog!

AC

Thanked 2 times
User
Posted 30 October 2017 20:28:04(UTC)

AC, you have stated that rather strongly but it is only your personal view. In fact, there is an increasing body of evidence to support the idea that diet can help or hinder people with cancer, including the Prostate Cancer Research Foundation whose cookbook is available on Amazon and Prof Thomas whose book is also available on Amazon. Some of the biggest uro cancer hospitals / centres of excellence (including my locals) are involved in research with well renowned universities etc to explore the links between PCa and environmental factors, diet being an environmental factor. The research around superfoods suggests some of these are rather more than snake oil.

And even if there was absolutely zero evidence that eating coal could cure cancer, if a man feels better in body, mind and spirit because he feels that he is making a positive contribution to his own health then so be it (as long as he doesn't reject 'proper' treatment in the hope that some miracle is going to happen aka Steve Jobs)

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


User
Posted 30 October 2017 20:37:43(UTC)

Willk, you should get medical advice before making any major change in diet, and regard supplements with extreme suspicion!

As for your chance of recurrence, you could ask your oncologist or nurse specialist whether they use the MSK nomograms (or a local version) and if they do, whether your data was ever put in and what the result was.

At our hospital, John was told this information when first diagnosed and then it was re-worked after he had the recurrence. The UK has slightly worse outcomes than the New York average, and Leeds has slightly worse outcomes than the UK average so the nomograms have been adjusted to reflect these differences. When John's stats were put in (age at diagnosis 50, PSA 3.1, extent at pathology) they told him he had a 55% chance of recurrence. You could google the Memorial Sloan Kettering nomograms yourself and put your own stats in but you would need to keep in mind that outcomes may be slightly better or worse in your area.

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


User
Posted 31 October 2017 17:32:43(UTC)

Lyn, I won't fall out with such a distinguished contributor to this forum. I agree entirely that there is useful research going on and suggestions of hope for the future. Perhaps it is semantics again. I was scientifically trained and place greater reliance on evidence and proof than hypothesis and theory. If studies produce these, I shall be delighted. Meantime what is proven is that getting the body otherwise healthy and robust means more fighting power is available to live with and help keep at bay this wretched disease. I don't ignore the power of the placebo effect, for some lucky people. Pity we can't rely on it for all!

AC

User
Posted 31 October 2017 19:04:00(UTC)

Hi AC, I can't disagree with any of that :-)

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


User
Posted 01 November 2017 07:40:07(UTC)
Thanks All for your replies.

Further research has shown risk of progression with PT3a and or Extracapsular Extension is anything from 50% to 80% depending which papers/studies you read or believe. Also there is not really any data on likely time scales if it were to occur.

It seems the jury is definately still out on which foods might or might not effect PCa occurance or progression. I have done a lot of reading and think there is no doubt that a healthy diet and excercise are the most important. I am also almost convinced that red meat, dairy and saturated fat are possible contributors to risk of progression, sufficiently so that I have cut right down on these and l'm excercising every day. If I do get a recurrance atleast I will know I have done all I can.

Thanks to all who contribute to this forum, there's obviously a lot of knowledge to be gained from the first hand experiences and advice of others, which adds to what we learn from our Cosultants.
Cheers and good luck to all on this journey.

Willk
 
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