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 | Posted on 20 Nov 2012 09:24

Is this wait normal ??!!!!

  • 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

  • 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

  • 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

  • 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

     

  • 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

  • Thank you all so much for your reassuring replies :-)

    I feel better knowing that I'm not the only person to think 3 weeks is a heck of a long time!

    To be honest, I expected maybe one or two condescending replies telling me to not be so overdramatic!

    I am amazed that there are members here who have both suffered ...and survived ...everything from diagnosis to treatments, operations, getting-back-on-your-feet afterwards and are still able to talk openly. I hope this doesn't sound patronising but I admire you all ....I really do!!!

    My boyfriend doesn't want to talk about it at all. I've had to ring his children, brother who lives abroad and other family members and it's flipping hard, isn't it ??

    By that I mean, if we were ringing to say we'd just won a few quid on the lottery, things would be so much different!! I know there's nothing more difficult than what he's going through ..and believe me, I do feel a bit of a fraud moaning about such trivial matters ...but I have to vent my spleen somewhere hahaha !!!

    Tomorrow I'll start my ringing around until ''they'' get cheesed off with hearing my voice (heh heh!)....don't know how much good it will do, but I can only try ....a few family members have ''helpfully'' suggested what I should ...and shouldn't be doing...but when it comes to offering something practical, there's never anyone around!

    Sorry ....I'm ranting again, aren't I ? Hahaha ....oh God ...please tell me I'm not the only one with a huge chip on my shoulder over this!

    Also ...how do you talk to someone who is ''doing an ostrich'' ??? He won't tell me if he's scared, fed up, p-ed off, depressed ....I'm not a blooming mind reader but I do want to help!

    I'm sorry I can't see all of your replies now to reply individually, but I have read all of them and they mean so much. Thank you again ;-)

    Earthling :-) xxx

    ...PS ...In my first post I referred to ''it'' as ''the illness'' ....I'm not ''doing an ostrich'', it's just I can't bring myself to use the word unless I really have to ;-) xxx

  • Hi earthling

    You're doing fine. everyone reacts in different ways and sometimes you just have to wait until your partner feels ready to talk. He may find talking to another friend easier as he may not want to worry or frighten you with his thoughts. Just be there for him when he's ready to talk to you. and try and offload your own thoughts to someone you can trust or just blast off here as we all know what it's like!

    Try and give yourself some time away even if it's just for walk or a coffee with a friend. Take care

  • Hi earthling, yes I think just wait until he's ready to talk. It will happen; it's just so much to process that people need different amounts of time to try to make sense of something so unexpected. 

    Stay strong

  • i think you are just venting what we all are feeling,my dad wont talk about it at all either,its very hard.you are certainly not over dramatic.good luck with your phone calls

  • Thank you all :-)

    I'm sorry I don't get chance to pop on and thank you each night ...I just don't seem to have the chance to fart lately, let alone anything else !!!

    Well ...my ''badgering'' worked :-) I managed to get hold of his consultants secretary on Monday and she was soooo helpful :-) Admittedly I blagged and said we were supposed to hear within a week, but she went off to hunt out the report online for me and gave us an appointment for tomorrow morning :-)

    I'm hoping that being so prompt means that this has been caught early enough for an operation. Obviously I don't want him to be in pain, but the sooner this thing is out, the better.

    I feel as though I should be full of questions, but the only one I can think of asking is when his treatment will start. Are there any other things I should be asking about?

    I know I sound like a plank (hahaha) but I've never been through this before so everything is new. I don't want to come away from there thinking ''Oh ...I should have said this, that or the other.''

    What sort of things did you ask about? Just so I've got an idea because by the time I find the hospital tomorrow, the nerves are likely to have kicked in and my mind will be somewhere else !!

  • What should you ask about? To be honest I didnt ask anything as trusted them to get the thing out.Must say the surgeons,nurses etc etc explained treatment,risks recovery after surgery and chemo very well indeed.I actually found this site and OPA site better for any questions as easier to understand!!

    Did you have a look at my profile ? and others as that explains most things you will need to know.

    I had to wait 6 months before I got surgery due to lack of intensive beds!!!! Rather than an illness look at it as a disease. I found family a nuisance interfering and sometimes you have to think of the patients feelings as they can be lost along the way. Its very easy on this site to talk openly as all on the journey (been on it for 2 years now) Feel free to say whats on your mind as we have all been where you are now.Their are some sad stories and also happy ones.I now have many friends on site and 3 of us diagnosed around the same time and travelled the journey through higs and lows,scares along the way(I have one now as a swollen lymph gland has appeared so surgeon checking it out) are all meeting up as its like we have known each other for years!

    Keep us all posted

    Griff x

  • I went to every appointment with my Dad with a list of questions for the first few consultations, it really helped us all because he didn't particularly want to ask the questions but wanted to know the answers!  I had them all typed out and took a clip board with me (My mum was calling me crazy clipboard lady for some time!).  It's a whole new language to learn and it's a good idea to write it down so that you can go over it and look it up later.  Otherwise, we were scared of coming up with all the questions after the consultation which would have been stressful.

    Obviously, it's each to their own, but it was really important to us.  I have the list of questions we did for the first/second consultations if you want me to send them to you direct?

    Good luck tomorrow

    Helen