GREG'S LEGACY

Specialising in the human experience of Living with prostate cancer – warts and all

What would I know?

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I was alarmed recently to get a call from a neighbour who had just been tested for prostate cancer.

We chatted over the back fence.  He had come to me because I have been there, done that!   Bill had just had a PSA blood test and was awaiting the result.  However, he panicked – big time.  His greatest concern was how to tell his daughters if he had Prostate Cancer.  So I took him through the logic of what happens next if he does indeed test positive or tests negative … and I was able to settle his panic attack.

Telling Your Kids You Have Cancer

What people are after, I think, are:

  • Some comforting words from someone who’s been through treatment, a word of hope that their first thoughts about imminent death are likely to be misplaced.
  • Making sense of doctor speak.  Some doctors seem better than others at talking in plain English, and all of them are justifiably wary about making predictions.  Some unconsciously favour the kind of treatment they offer, to the neglect of other options.  That’s what Google is there for.
  • Some insight into what they face. Men are suddenly very keen to know what treatment to choose, what happens with each kind, and what it will do to them, especially in terms of potential incontinence and impotence. Google helps here too.

So, am I in a position to help?

I can help a little, even if it’s only to calm someone down and provide solid evidence that people do indeed live through the experience of prostate cancer.  As it turned out, my neighbour did NOT have Prostate Cancer and he has thanked me for getting him through the panic stage.    A support group or champion is absolutely necessary.

I do know  about ADT or Hormone Therapy because that was the only treatment available to me – apart from undergoing a TURP.  For the rest of it, I do not know the full story.

So, what do I know?

  1. All men over 50 should get themselves tested for prostate cancer. After the age of 60, it should be an annual event.
  2. It must involve both the PSA blood test and the digital rectal exam. These imprecise tests do not diagnose cancer.
  3. If you have been tested, and the news is bad, a biopsy will be called for to identify any tumours.
  4. Get more than one opinion of your diagnosis, preferably including one from a cancer specialist (oncologist). Urologists tend to favour surgery, radiologists radiotherapy, etc.  No two doctors will agree on their opinions.
  5. A CT scan will identify cancerous tissue whilst a nuclear bone scan will identify tumours in the skeleton.
  6. Ask for every test result and report generated.  That information belongs to you and you may need it later on as specialists will ask for them.
  7. There’s rarely any reason to panic, except perhaps if the diagnosis is late in the piece and the cancer has spread. But even then, you are  not going to stop it.
  8. The four main treatment options and their variations – surgery, external radiation, brachytherapy, drugs (hormone and/or chemo) – are highly effective to some degree or other, but all have their down-sides, such as urinary problems, impotence, bowel problems, depression, risk of a recurrence of the disease, etc.
  9. Stop and wait – this is a slow growing cancer.  Do not accept any urgency without question.  You have time to research your options before starting radical treatment.  “Watchful Waiting” is a valid option.

If you do have it, consider the variables:

All I can claim to offer in the way of help is to urge people to find out more for themselves so they can ask their doctor the right questions.

Nobody has to take the bad news and the first opinion and accept their fate without question.

The aim of this blog has been to tell it how it is – blow by blow – living with Prostate Cancer.  It’s noticeable that whatever else doctors and researchers learn about their trade, little of it encompasses an ability to communicate.  I had to educate my GP.

I know a lot about:

  • TURP procedure (because that’s what I had), but only so far as it affected me;
  • Having a catheter. No problem in my case because the urology nurse who removed it knew what she was doing.
  • The importance of getting fit before and after the operation;
  • Boost your immune system with probiotics, diet, and supplements like lactoferrin;
  • The need to change diet – to cut down on red meat, and increase intake of alkaline/antioxidant foods;
  • The importance of a support network including partner, Palliative Care, friends and family;
  • Not rushing back to work.   Once treatment begins, your quality of life will be damaged and you won’t want to go to work.
  • Analysing and adjusting  your views on life, belief system and spirituality.

The danger of a little knowledge

I read new stuff about prostate cancer every time I check my Google Alerts and RSS feeds, and I’m regularly surprised by new knoeledge on aspects I thought I was familiar with.  My “little” knowledge is indeed that.

But one advantage I have is the motivation to pass on what I have learned.a  Follow this blog and get the combined experiences of both Lee Gallagher and myself.

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Written by Greg Naylor

6 June 2012 at 12:00 am

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