Is this wait normal ??!!!!

Gullet (oesophagus) cancer

A group for anyone affected by gullet cancer (also known as oesophageal cancer) to get together, ask questions, share experiences and support each other.

Is this wait normal ??!!!!

No. of entries: 45 | No.of favourites: 0 | Posted on 20 Nov 2012 09:24
  • Hi everyone....I won't clog the board up with a cheeky introduction, but hi nonetheless :-)

    My boyfriend is 61 and was officially diagnosed with ''the illness'' on 9th November. We were advised to prepare for it, given both his family history and the symptoms he was having. It was still a blooming shock though :-(

    We were told that the thing is a few centimetres long (lengthways) and that he would be rushed through for a CT scan to determine the exact size, location and the possibility of any metastasis (<<have I spelt that right ?? haha!!). After ringing everyday (I think they got fed up of my voice in the end!) we finally had an appointment today. We have had no letter or anything, considering this was supposed to be ''rushed through''.

    Anyhow, following the scan, we were told that if we don't hear anything within 3 weeks, we are to ring his doctor and ask if he has heard anything.

    3 flipping WEEKS ?? I don't know whether to be happy that they aren't rushing (maybe it's not as bad as we thought ?) ....or whether to be really cheesed off that they aren't rushing (what if it grows quickly as it did with his twin and their dad?)

    What do you think ?

    I fully intend on telephoning his Key Worker on Friday and giving her a gentle 'prod' to see if she can chase anything up ...I'll ring the hospital, clinic and his doctor if needs be as well !

    Am I right to be panicking ? Am I the only person to be panicking at a time like this ? Surely 3 weeks is a bit out-of-the-question ? If it was a broken arm, then fair enough, but this???

    Is this sort of wait normal ?

    I'm sorry that my first post here is such a panicked one ....it's just that I don't know of anyone who has been through anything like this so I really don't know who best to annoy with such questions haha!!

    Many thanks,

    Earthling :-) xxx

    Mum of 6 children as well as 3 step-children :-)

  • Hi earthling Glad you found this site as this is where we can balst off about anything and get responses from other peolpe going through the same thing as you. Yes the waiting is endless and adds to the anxiety we all feel. Contact your key worker every day if you feel like it and explain how you and your boyfriend are feeling. and that the three weeks wait is too long. to be honest that is exactly where I and my husband are - waiting for the oncologist to tell us how bad things are! and it's been more than three weeks We see him this Thursday! Keep annoying folk at the hospital!!
  • the waiting is a nightmare,im so frustrated as well as my poor dad who is the one going throught,its 9 weeks since his diagnosis and still no word of treatment,i hope you have a quicker response

  • Yes I"m afraid this is normal as lot of work involved to offer correct treatment.I had a long wait from initial diagnosis in September 2010.A good thing to do is look at my profile which explains from diagnosis to treatment.Have a look at other peoples profiles too as this will help understand what happens.Any questions,concerns you have will be answered by some lovely people on this site and it was a godsend for me in my darker days!! as remember we are all in the same boat

    Griff

    Griff

  • Hi Earthling, sorry you find yourself here, but as others have said, you will receive much comfort and support. Yes, the wait is difficult, but can be "normal". My husband was diagnosed at the end of September, and started chemo last week. They need to get the staging right, before they will make any decisions. That said, I would make as much contact with them as you feel you need, and ask for an appointment following the CT scan. Take care

    TinaM

  • Earthling

    Three weeks to find the result of a CT scan seems extreme. There were a number of other tests after the CT scan in my husband's case (which took a few weeks to confirm staging), but the consultation following the CT scan was within days.

    Make a nuisance of yourself - try the Consultant's secretary as well if you have a name- the stakes are too high to worry about offending anyone

    Good luck

    Chris

     

    Chris HG

  • There are some time targets for cancer management in England at least. 31 days from referral to diagnosis, and 62 days from referral to first definitive treatment. For oesophagus particularly, the number of staging investigations can mean that the target is not met, but that is no reason not to try.

    An audit of CT timings in NW London in 2011 showed that the typical time from CT request to scan was 4-6 days although a few waited over 14 days. The time from CT request to completing the report averaged 7 days with a maximum of 22 days. From this you would think that the time from scan to report, especially starting from a cancer diagnosis should be about 3 days.

    I suggest that 3 weeks from scan to report is not an acceptable performance.

  • "we were told that if we don't hear anything within 3 weeks, we are to ring his doctor and ask if he has heard anything."

    Hi Earthling, I was told the exact same thing I actually ended up having my operation 3 weeks after the last tests/scans were done - that was 32 months ago. They will always give you the long time scale to cover themselves. Remember, they have to study the results and make absolutely certain that they offer the best treatment.  Also, they will be doing the same for a lot of other patients at the same time.

    There's no need to apologise for for asking questions. I didn't know anything about the condition until I was diagnosed.

    All the best

     

    Mark

    Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming WOW, what a RIDE!!