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4 months & still no treatment!!!!

Ems4
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I'm new to this forum and I am feeling very frustrated about my dads diagnosis with regards to his oesophagus cancer. It has now been 4 months since he first went to the doctors & still isn't receiving treatment!!! He has had every test under the sun, ok fine at least they know what we're dealing with, however the time scale seems ridiculous! Is this normal or have we just been strung along?! We are desperate as when he first went to the docs he was told it was an ulser & come back in 6 weeks, then to have more tests & then be told it's cancer!! The doctor told us it was a 2m tumor at the beginning, now we are at stage 4a aggressive cancer and they are now unable to get a camera down! He is recovering from a laparoscopy & was told that we would be having treatment next week either way of results. We've now been told he'll have an appointment next week for an assesment & be told when his treatment will start, that's another week!!! My dad feels like they are writing him off even before treatment & so do we!!!!! Any response info would be appreciated. Thank you

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    Hi Ems,

    No, this isn't normal but it is not unusual. 

    I was also initially sent down the suspected ulcer route (to be fair, I thought I had an ulcer too). Once I'd had an endoscopy and biopsies, it was a week before my CT scan, a week waiting to see my oncologist and I started chemo the following week. 

    Don't hesitate to ask what's going on and why things are being delayed.

    Good luck

    Dave

  • Offline in reply to davek
    Hello Dave, Thank you for your response & info. If you don't mind me asking what stage were you & actually how many weeks did it take for you to actually get treatment? My friend has said its a postcode lottery & some areas get quicker/better treatment in different areas. We're getting desperate, my dad was really positive until today & has now gone in to blind panic that he's going to die! I'm so sorry for the drama but feel like we're banging our heads in a brick wall. Thanks again.
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    Hi Ems4

    Your dads situation sadly is all too common, take away the 6 week wait imposed by his GPs incompetence and he has still been waiting 10 weeks. We are constantly told that speedier diagnosis is the key to improving the outcomes for cancer patients. Its no use being diagnosed in a week if you then have to wait 3 months for your first treatment, its supposed to be 60 days but apparently the trusts are being allowed to let these targets slip in order to balance their books. I have found myself in the same situation as your dad because of excessive delays in starting treatment. Although I cannot fault the care I received once treatment did start. I can only suggest that you help your dad by keeping up communication with the hospital, reminding them of his excessive waiting time, offer to take any cancelled appointments at short notice etc. Wishing you both well in this difficult time. Kim

  • Offline in reply to Ems4

    Hi Ems,

    I don't mind you asking at all. To see my story, click on my username to the left of this post.

    My diagnosis was made in 2013 at Stage 4, which was a bit of a shock. My treatment started about three weeks after the endoscopy during which my primary cancer was discovered. 

    There is a bit of a postcode lottery, but there can also be a hiatus if the cancer team isn't absolutely sure of the diagnosis and hence the treatment. I was relatively lucky in that my primary was obvious and my clinical pathway well established.

    Your Dad's reaction is to be expected, it would be worth phoning his oncologist's or surgeon's medical secretary to explain the situation, fears and concerns. Just ring the hospital switchboard and ask to be put through to Dr X's medical secretary. Then ask when you should expect treatment to start. The Med Sec's role is often under-estimated, they manage the consultant's diary and often prioritise messages to them too. If you aren't happy with the answer, politely complain to them and threaten to raise a formal complaint.

    As Kim says, the maximum time to wait is 60 days from diagnosis to treatment but since 2010 (when targets were eased and budgets tightened for political reasons) more and more Trusts have been failing to hit the minimum standards. 

    Good luck

    Dave

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