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Thread: The beast revisits

  1. #981
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    I have worked in general practice in the UK for 26 years and normally there would be no real difficulty chasing a report like this. It is time consuming as not all the phone calls can be delegated to practice staff, but it is very much doable. Private providers are a bit more tricky as sometimes you need to nag the consultant to nag them, depending on their contract, but it is still doable.

  2. #982
    Super Moderator Top User Baz10's Avatar
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    May 2011
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    Lyssa,
    Many thanks for the input,
    Yes I am aware it is doable albeit frustrating and time consuming for both myself and my GPs.
    One would think somehow, somewhere there would have been some form of communication since August 9th.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  3. #983
    Regular User
    Join Date
    Jan 2018
    Posts
    29
    Quote Originally Posted by Baz10 View Post
    Lyssa,
    Many thanks for the input,
    Yes I am aware it is doable albeit frustrating and time consuming for both myself and my GPs.
    One would think somehow, somewhere there would have been some form of communication since August 9th.
    Barry

    One would indeed have hoped so. I think one of the problems is that there is less of a connection between the clinical and administrative side of things than there used to be so the people dealing with the reports are not really aware of the clinical and emotional consequences, so once an error has been made it is sometimes harder work than it should be getting it fixed. Good luck with lighting a few fires under them.

  4. #984
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
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    Whilst the ethos of taking a holistic approach is profoundly obvious within the nursing fraternity this appears to be sadly lacking at the clinical level, where the NHS has increasingly become speciality compartmentalised.

    Patient doesn’t fit into my specialist area (box) and is passed onto the next.

    As a dear friend of many years and a orthopaedic consultant said at least 20 years before, the specialist / surgeons answer to administrators. Alas from my extended periods on ward I have witnessed what you state.

    My surgery has changed the title of recepfionists to
    “Care Navigators” thereby lies the rub, judgement on who and when one is seen let alone the possible “urgency” is not a clinical decision any longer.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  5. #985
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,226
    Hallelujah,
    Finally got a phone call back from Colorectal secretary this morning.

    Confirmed the report from Mr. Celentaro back to my GPs was sent on August 19th, despite my practice on no less than 3 occasions denying it had been received.
    Moreso a copy was faxed across after my first enquiry in September with Colorectal as they didn’t understand why my GPs hadn’t received the orginal.
    Summary is
    No evidence of CRC recurrence which is indeed reassuring (their words not mine) so “discharged to my GPs for further investigation of the inguinal pain which was quite evident during palpating”.

    Immediately following the call she again faxed a copy to my practice, called to say give them 15 minutes and call them, which I did to be again told they had not received any report.
    On suggesting they check the fax machine, the response from the Vare Navigator or should I say receptionist was
    ”Do you think I am not telling you the truth”.
    That predicated my obvious response,
    No I don’t believe you as this is the 3rd occasion you have told me you don’t have it. FYI I have a copy of the fax’s sent by email to me including the one sent 20 minutes ago which shows clearly the time it was sent, that being 10.13 this morning.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  6. #986
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,226
    Time to reflect on a cancer journey that commenced some 9 years ago, albeit a few bumps and turns in the road and nasty surprises along the route.
    Some of those bumps have left me with problems that continue to cause intense daily discomfort and will do as long as I live.

    Yet despite everything I would quite simply not be alive today had it not been for the intervention and treatment of some brilliant surgeons and medical staff to whom I owe not just a thank you but intense gratitude and respect for their professional skills, dedication and not giving up on me.

    All journeys start somewhere and must end at some point.

    I am sure this thread has bored many, hopefully provided help and inspiration to a few, motivated some not to ignore the warning signals.

    it has been a journey of at times despair, hope, pain and yes above all modern medicine can provide joy that life is worth living, to be appreciated on a daily basis.

    To paraphrase Winston Churchill’s famous speech
    Never have so many owed so much to so few.
    The few are those dedicated physicians that strive to keep us alive.

    On those words I feel it is the right time to close this thread and say in conclusion.
    A huge thank you to all the contributors to our forum, a special thanks to my freinds and colleagues, Moderators and Admin for staying the journey and alas remembering our freinds and colleagues that have over the years succumbed despite all efforts to this disease “Cancer” which does not dominate us for one day we shall see a cure to the “Beast” in whatever form it manifests itself.
    Thank you one and all.
    Barry
    Thread closed.
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

 

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