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I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..

Sunday, 2 October 2011

Side-effects of cancer treatment

I was given this article earlier today by a friend (Thank You C).... who thought I might find it interesting...that was like the understatement of the year.

This is well worth a read - not as a 'dig' at GP's or anyone else, but to make us all aware of the fact that we MUST take responsibility for our own care - we must step up and complain loudly if things aren't right, we must accept that GP's do not know everything and therefore push and push for access to those who can help.

Dealing with cancer is hard enough, dealing with the after-effects of treatment is a double blow

GPs 'failing cancer patients' by not spotting side-effects of treatment | Society | The Guardian

In short this article covers:
25% of symptoms are missed by GP's who are simply not aware of the side-effects of cancer treatments.
Poor communication between hospitals and family doctors meant signs of side-effects went undetected and caused patients pain, misery and discomfort
250,000 who have survived cancer have had symptoms such as osteoporosis, heart disease and bowel trouble not picked up by the GP.
Currently GP's are not recording who has had Chemotherapy or Radiotherapy, partly because they don't receive enough information from hospitals but also because they don't realise why it's important for them to do that!
NCSI estimates that between 20-25% of those diagnosed with cancer later experience a consequence of their treatment which affects their physical or mental health or quality of life.
GP's will not necessarily be used to the long term side-effects of many cancer drugs, so sometimes those effects aren't picked up by the GP and primary care team
The quality of information given by hospitals to GP's varies and sometimes there is confusion about who is looking after the patient - and the patient can get lost in the cracks

Definitely needs to be read so that should you be unlucky enough to find yourself with symptoms then you will remember that GP's cannot possibly know everything and sometimes need to be guided by us.

Also, this website is definitely worth a look...full of interesting information and facts.

The National Cancer Survivorship Initiative home page « National Cancer Survivorship Initiative

The National Cancer Survivorship Initiative (NCSI) originated from the Cancer Reform Strategy (2007). The NCSI is a partnership between the Department of Health, Macmillan Cancer Support and is supported by NHS Improvement. The aim of the NCSI is, by 2012, to have taken the necessary steps to ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible.

At the bottom of the NCSI page are some supplements you can download - the HSJ Survivorship supplement is definitely worth reading, particularly an article contained within that called 'Forward Planning' - but in all honesty there was plenty worth reading in the whole supplement and on the whole website too.

Catch up soon x


  1. This is a very interesting account with some valuable points made. As a (now semi retired) GP who was much involved with teaching communication skills to doctors in vocational training, it tends to bear out much of what I attempted to put across. It is true that many patients with experience of illness and its treatment may have an edge on their doctor, who will hopefully acknowledge this and learn from it. Modern practice is, as you say, a partnership between doctor and patient - or should be so ideally.

    It reminds me of a book we used to recommend - "Meetings between Experts" by Tucket et al (still available through Amazon), in which this very concept is examined in depth.

    And the safe doctor is one who seeks out her/his knowledge and skills deficiences, acknowledges them and addresses them.

    As you say, we none of us knows everything - how can we? - but the most important this is to recognise this. I've 42 years experience in practice, am a Fellow of the Royal College of GPs and have a Masters in general practice. I'm not meaning to be showing off saying this, but merely want to reinforce the point that even the clever cloggses among us don't know it all by eny means.

  2. Carole,
    Thanks for the link. There was a lot of interesting information in it. It gave me some ideas of things to ask about when Steve does his follow up visit with his surgeon later this month. I've noticed that information on caring for the cancer survivor after treatment is extremely lacking. You'd think that they would have that information and help more easily available since it appears to be a common problem. Instead it seems to fall between the cracks. Frustrating!
    Sincerely, Carla

  3. Hi Carole,
    This is really good! I have pinched it for my blog....(stating where I got it from).
    Hope that you don't mind!

  4. Hi Carol,

    You're welcome to use it anywhere you like - needs to hit as big an audience as possible.

    That way we can convince more people to stand up and accept a level of responsibility for their care, to be fully involved and to ensure that all decisions include them and are not just 'about' them.
    Share away xxxx

    Hi Carla,

    I was hoping you were going to tell me this was a 'UK' problem - but it appears not :(

    If only things got instantly better once the treatment was done, if only we all got 'better' straight away, life would be that much easier.

    I hope that you and Steve get clear answers at your meeting and that whatever you find out helps long term.
    Hugs Carla

  5. Hi Author Doc,

    Y'see, what we need is more GP's like you - who are both clever clogs and yet still willing to admit that maybe, just maybe, you still have stuff to find out about....:-))

    I'll be very interested to hear your opinion on the Dispatches programme that was on TV tonight...If you didn't manage to catch it Channel 4 on demand (available on the web) will be showing it.

    I will be doing a post about this over the next few days.

  6. Hi Carole,
    looking forward to that post!

    Author Doc,
    I agree with Carole, we do need more like you, no one expects every one to know everything, but listening to us would be great!
    Hugs to you

  7. Uh - I've retired. Well, I'm trying to but I keep on getting calls from the local GP surgeries about here wanting me to come and help out.

    And I am 65 in just over a month!

  8. Doc,

    You're just a spring chicken - get down that surgery and sort them all out :-))