Delays!

Hi

I'm new to the forum so hello  

In October my Dad lost a lot of weight and became very frail, he was going to the toilet frequently too.  A trip to the GP found nothing obvious and on 2nd November 2020 Dad was booked in for a chest X-ray.  After a few days we were told to ring the GP for the results.

A week passed before any result as the GP had been on leave, surprisingly Dad was diagnosed with a chest infection. (I am no medic but was surprised at the diagnosis as he displayed no expected symptoms of a chest infection).

Dad was given a weeks course of antibiotics.  On the sixth day Mum found Dad unconscious on the bedroom floor.  An ambulance was called and Dad was taken into hospital.

Dad was kept in hospital for a week, seemingly no investigation was carried out re his weight loss (despite daily telephone calls to nurses explaining our concerns) instead they removed some of his diabetes medication and sent him home.  He was told that he would be booked in for a CT scan.

A month after being admitted to hospital (three weeks after leaving hospital) an appointment came through for him to have a ct scan, a week after this scan (24th December) Dad had an appointment to discuss the scan results, a nurse explained that Dads stomach wall was suspiciously thick, and that there were leisons on his liver. Worryingly he had become so dehydrated he was told to go home for Christmas Day, and then return Boxing Day to be admitted to hospital.  The dr explained on being admitted that they would book dad in for an endoscopy biopsy in two weeks time as an outpatient.

Thankfully after much protest the endoscopy took place whilst he was already in hospital so that saved us a couple of weeks further waiting.

Dad is now home, clearly though still very unwell.  We are no waiting for the biopsy results, if these are inconclusive he is to be admitted for a liver biopsy.

His hospital notes suspect that he has a rare stomach cancer (linitus plasticus) that may have metastasised to his liver.

The whole process feels unnecessarily elongated.  I don't understand why tests cannot be conducted in parrelel.  Time I fear is not on Dads side and from the initial incorrect diagnosis of a chest infection to now is over two months, during which he has spent two weeks of that in hospital, and we still don't have a formal diagnosis, and therefore no treatment plan.

I understand that everyone wants quick results, every day seems like a week, but are these waits for tests and results normal? 
 

If cancer is confirmed, how long should we expect to wait for any treatment to start?
 

Your experiences would be most helpful

Thanks

 

 

  • Hello RKB

    I'm sorry to hear that your Dad has been unwell and that he is undergoing tests for a possible cancer diagnosis. I know that a lot of our members here will understand how frustrating it can be waiting for tests and results. For many people it really is a difficult part of the process. 

    Hopefully the endoscopy results will bring some news in the next week or so and that will help the Consultants to make a decision about what treatment options may be available for your Dad. 

    You might find it helpful in the meantime to have a chat with one of our team of nurses. I'm sure they will be able to offer you some support and advice ahead of your Dad's next appointment. If you'd like to speak to them they're available Monda to Friday 9am to 5pm on 0808 800 4040. 

    Do let us know how he gets on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Thanks for your response.  He deteriorates so quickly outside of hospital as he cannot stay hydrated.  They have spoke with the dr re this today so hopefully that can be managed better. 

  • Update

    Dad never got the results of his endoscopy, he was contacted by the hospital and asked to go in on 15th January for a liver biopsy , unfortunately whilst getting ready to go to hospital he collapsed and died at home.

    The matter has been referred to the coroner as there was never a formal diagnosis.  The coroners officer has already indicated that there may be an investigation.  We wait to hear the results of his PM before knowing the next steps.

    I'm somewhat troubled by the delays that Dad experienced, in the two and a half months since he first went to the doctors he has had two stays in hospital where seemingly other than hydrating him, no other treatment was offered.  He never received any formal diagnosis in that time, therefore he had no real support (other than his family) and I'm feeling very much let down, we have all been left in the dark.
     

    These message boards have been a great comfort in seeing others experiences as Dads journey progressed, I hope that I do not have to revisit them any time soon.  
     

    To those fighting your own battles, good luck! I wish you all the best