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My prostate cancer book: is it better to be an ACTIVE patient?

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User
Posted 07 Jun 2017 at 08:43

When I had my prostate cancers surgery in October 2016, I thought I had to and put together a strategy to face this challenge. I ended up writing a short book:

Giuseppe Enrico Bignardi. A Robotic What? The story of my prostatectomy and a rough guide for the prostate cancer journey. Grosvenor House Publishing Limited (24 May 2017).

CONSTRUCTIVE CRITICISM OR AMAZON REVIEWS ARE WELCOME!

I had a lot of questions for which I could not find an answer. Why are not all patients offered a multiparametric MRI before the biopsies are taken (many argue this would be beneficial)?  Why patients are not routinely offered a copy of their histology report? How can a patient express preferences about treatment? How do we choose a treatment modality or a surgeon? How can we enable really informed consent? Can I reduce my odds of relapse by changing my diet, exercise, taking food supplements like Pomi-T or the mini-aspirin? What do I tell my sons about their increased risk of prostate cancer?

I ended up writing a book with my experience and my interpretation of the literature. In the book I am very clear about my scope: I am neither a specialist nor an expert. I am a patient looking for answers. I can only offer a patient’s perspective. I am strongly convinced, though, that it is better to be “active” patients.

User
Posted 07 Jun 2017 at 08:43

When I had my prostate cancers surgery in October 2016, I thought I had to and put together a strategy to face this challenge. I ended up writing a short book:

Giuseppe Enrico Bignardi. A Robotic What? The story of my prostatectomy and a rough guide for the prostate cancer journey. Grosvenor House Publishing Limited (24 May 2017).

CONSTRUCTIVE CRITICISM OR AMAZON REVIEWS ARE WELCOME!

I had a lot of questions for which I could not find an answer. Why are not all patients offered a multiparametric MRI before the biopsies are taken (many argue this would be beneficial)?  Why patients are not routinely offered a copy of their histology report? How can a patient express preferences about treatment? How do we choose a treatment modality or a surgeon? How can we enable really informed consent? Can I reduce my odds of relapse by changing my diet, exercise, taking food supplements like Pomi-T or the mini-aspirin? What do I tell my sons about their increased risk of prostate cancer?

I ended up writing a book with my experience and my interpretation of the literature. In the book I am very clear about my scope: I am neither a specialist nor an expert. I am a patient looking for answers. I can only offer a patient’s perspective. I am strongly convinced, though, that it is better to be “active” patients.

User
Posted 08 Jun 2017 at 20:19

The book sounds fab. I too believe it is better to be an ACTiVE patient and can't get my head around the 'do not google' school of thought.

Your questions are all really valid. The world of PCa is changing rapidly and getting up to date information and understanding of different pathways, different order of tests for diagnostics, different types of biopsy is very muddy in my opinion. Then when you get to treatment options a complete picture of side effects and actual outcomes should be provided. the statistics available are too opaque for my liking and too much information is missing.

I still have not accessed the data supporting the decision to invest in robotics for PCa ...

Headed to Amazon now

I think this book needed writing

Regards

Clare

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User
Posted 08 Jun 2017 at 09:02

I hope your book will help the confused and perhaps make sense of the whys and wherefores.

I suspect a lot of the differences in obtaining special MRIs is due to local costs.

Why there can't be a gold standard and accepted way of dealing with PC, from GPs upwards is beyond me.

As an NHS consultant you must yourself have to see and deal with NHS anomalies and be frustrated by them.

Well done on the book. I hope it is a success

We can't control the winds - but we can adjust our sails
User
Posted 08 Jun 2017 at 20:19

The book sounds fab. I too believe it is better to be an ACTiVE patient and can't get my head around the 'do not google' school of thought.

Your questions are all really valid. The world of PCa is changing rapidly and getting up to date information and understanding of different pathways, different order of tests for diagnostics, different types of biopsy is very muddy in my opinion. Then when you get to treatment options a complete picture of side effects and actual outcomes should be provided. the statistics available are too opaque for my liking and too much information is missing.

I still have not accessed the data supporting the decision to invest in robotics for PCa ...

Headed to Amazon now

I think this book needed writing

Regards

Clare

User
Posted 09 Jun 2017 at 16:02

Just ordered the last copy from amazon, Giuseppe.

I look forward to reading it, but wish I didn't have tohttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

Ulsterman

User
Posted 12 Jun 2017 at 20:34

Thank you for the positive comments. During the time before and after my prostatectomy I quite liked reading books written by other cancer patients. The books I particularly liked are:

Blum, R. H. and Scholz, M., Invasion of the prostate snatchers: an essential guide to managing prostate cancer for patients and their families. Other Press, 1st edition 2011. This is mostly about too many prostatectomies having been done in the past, especially in the USA, when active surveillance might have been adequate (but it took some time to recognise this).

Cohen, J. S., Prostate cancer breakthroughs: new tests, new treatments, better options – A step-by-step guide to cutting edge diagnostic tests and 12 medically-proven treatments. Oceansong Publishing, 1st edition 2013. Cohen also emphasizes the benefits of the new MRI modalities.

Thomas, D., They said I had six months to live: surviving prostate cancer – 10 years on. CreateSpace Independent Publishing Platform, 1st edition 2016. The key theme in this book is FIGHTING SPIRIT.

Carlson, D., Dear prostate... I thought you were my friend: one man's journey through prostate cancer and beyond. CreateSpace Independent Publishing Platform, 1st edition 2016. The key theme here is how important, when you have cancer, is the SENSE OF HUMOR.

In my opinion there is a little imbalance in the prostate cancer published literature: thousands of medical articles and quite a few books by specialists published by mainstream publishers, but only a handful of books written by patients. Of course we need first class specialists and their books, but we also need the patients' voice and shared experience.

 
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