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How Long Should the Waiting Time be for an Urgent CT Scan?

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EmilyR
How Long Should the Waiting Time be for an Urgent CT Scan?

Hi everyone, hope all are doing well. 

I am four years post treatment and had a follow up appointment a few days ago.  My specialist said that I need a CT scan to check for possible recurrence due to some symptoms I'm having.  He told me that he would add a red dot to the request which means it's urgent but said that it may be two weeks before I hear or it may be up to two months.  Two months seems a very long time to wait worrying if the cancer has come back and I know from past experience that, once the scan has been done, it can take weeks or months before it has been reported on.  Has anyone else found that they have to wait this long for a scan that will show whether there is recurrence or not?  Is this normal?  Don't get me wrong, I am so happy that my treatment worked despite the fact that I have a lot of late effects but I seem to have spent quite a bit of time in the last few years having to worry for months about what is going on due to the time it takes for scan results to come back though I have never had to wait for two months to actually have a scan before.  Really worried.

Memagh

Hi Emily,

I have had several appointments recently due to side effects (extensive bladder and bowel damage showing up on scans). Each time I have been told that due to a backlog, it could be 6 weeks before I hear anything. All my appointments have come through within 2 weeks. I spoke to a gastroenterologist last week, she decided I needed a ct scan and I'm having it done on Thursday. It was the same when my oncologist decided I needed a colonoscopy. I was told it would be at least 6 weeks and it was done two weeks later. I'm not sure where you are, I'm South East of the Uk. I'm hoping, like me, they are giving you the worst case scenario regarding waiting times but hopefully it will be much quicker than that. Fingers crossed for you. We all know the waiting is torture!

x Maria

Diagnosed CC 01st August 2019 Stage 1b2 with 1 local lymph node involved.

Something else showed up on pet scan. Treatment delayed for surgery, done on September 9th. Found to be a simple ovarian cyst, 1 ovary and tube removed.

Treatment plan 5 chemo, 25 extended field radio and 4 brachy. Treatment start date 02nd October 2019. Treatment end date 8th November.

February 2020 3 month scans NED

August 2020 9 Month scans NED

February 2021 15 Month scans NED

Extensive bladder damage seen on mri and damage to sigmoid colon.

 

 

EmilyR

Thank you, Memagh.  I'm glad that you haven't had to wait too long for your scans and hope that will be the same for me.  As you say, the waiting is the worst giving you time to imagine all sorts of worst case scenarios.  Thank you again for taking the time to give me some reassurance. x

Besty

Hi Emily

2 months is way too long to wait for a scan. That is not acceptable a lot can change in 2 months. 

They have always told me up to 2 weeks wait, but they usually call with a cancellation and It's always been quicker than 2 weeks. 

If you don't hear anything in 2 weeks then chase them up.

X

 

If you don't hear anything in 2 weeks, 

 

2007 Abnormal cells removed by LLETZ

Smears on a yearly basis for 5 years. All appeared normal.

Nov 2018 smear noted HPV no abnormal cells

Nov 2019 smear noted HPV no abnormal cells

January 2020 went to the doctor with abnormal bleeding

April 2020 diagnosed with adenocarcinoma 1B1

June 2020 Radical hysterectomy

September 2020 simple ovarian cyst noted

December 2020 complex cyst noted

January 2020 surgery to remove both ovaries

Results cancer was in both ovaries.

EmilyR

Thank you, Besty.  This was my feeling, too.  I have already had the symptoms since the end of November and my GP rather than referring me for a scan said I should contact the hospital as it could be related to my cervical cancer.  I rang the hospital and spoke to one of the gynae nurses attached to my specialist and they told me my normal scheduled appointment was towards the end of February so I should just wait for that.  This means, if I have to wait two months for this scan, it will be five months after the onset of the symptoms that they think could possibly be related to recurrence.  I don't particularly want to make myself a nuisance but feel I need to question this. x

LisaCardiff
LisaCardiff's picture

Hi Emily,

 I have just been to see my GP this morning as I am having vaginal bleeding and she has referred me to the gynae department at our local hospital. She rang them when I was there and explained everything and she was told to refer me. My GP told me if I hadn't heard anything in a couple of weeks to call her back and she will chase them up.

I agree it's not good enough and the timescales are long and we worry ourselves silly, which is understandable. It's hard enough as it is.

Hopefully we will get our appointments and fingers crossed everything will be fine. Fortunately for myself, I had a CT scan a week ago (I was admitted to hospital with a bowel obstruction) and the full pelvic and stomach CT scan didn't show anything ominous, only scar tissue and my blood tests were very good.

Thinking about and sending you love and good vibes 

Lisa x

-

Oct 2014 Diagnosed

Nov 2014 Chemo

Feb 2015 external & internal radio caused fistula

Sept 2015 Urostomy surgery

May 2016 urostomy redone & colostomy fitted

Oct 2016 readmitted with a blood clot

Apr 2017 cancer hospital gave me the all clear yay & thank you

Sept 2019 admitted to hospital with a bowel obstruction

June 2020 discharged from cancer hospital

Nov 2020 admitted for a bowel obstruction

Feb 2021 admitted with another bowel obstruction caused by scar tissue. Abdominal and pelvic CT scan only showed scar tissue and nothing ominous yay & thank you

Mar 2021 bleeding from vagina. GP referred me awaiting an appointment

EmilyR

Thank you, Lisa.  So pleased for you that your CT scan showed nothing worrying.  Two months is a very long time to wait and, in fact, I have just rung the gynae nurse at the hospital again and explained the situation and said I couldn't see how a CT scan for a new cancer was any more urgent than a CT scan for a recurrence which is basically what he told me - if it was a new cancer I would wait up to two weeks for a scan but, because it is a possible recurrence, it could be two weeks or it could be up to two months even though he said he would put a red dot on the form to show it was urgent.  The nurse said she is going to chase it up with the CT department to see if they have me pencilled in and will get back to me.  Crossed fingers!  Wishing you all the best..  xx

LisaCardiff
LisaCardiff's picture

Hi Emily,

I have just read your latest post and good for you for chasing the hospital. I fully agree with you a possible reoccurrence is just as important as a first possible case. Some people say some dumb things.

It is a worry and I am sure yourself, myself and anyone else wouldn't bother them if we didn't need to and we certainly don't want to. We just want to get on with our lives.

Please keep us updated as to when you have your appointment and what happens and I will too.

I take hope from my recent CT scan but I have been panicking and worrying and I will continue to do so until I have an answer. Plus I have PTSD and anything medical sends me into a melt down.

Thinking about you and sending you love and good vibes you brave, beautiful lady.

Lisa x

-

Oct 2014 Diagnosed

Nov 2014 Chemo

Feb 2015 external & internal radio caused fistula

Sept 2015 Urostomy surgery

May 2016 urostomy redone & colostomy fitted

Oct 2016 readmitted with a blood clot

Apr 2017 cancer hospital gave me the all clear yay & thank you

Sept 2019 admitted to hospital with a bowel obstruction

June 2020 discharged from cancer hospital

Nov 2020 admitted for a bowel obstruction

Feb 2021 admitted with another bowel obstruction caused by scar tissue. Abdominal and pelvic CT scan only showed scar tissue and nothing ominous yay & thank you

Mar 2021 bleeding from vagina. GP referred me awaiting an appointment

EmilyR

Just to let everyone know that i have had a good outcome with my scan waiting time.  The gynae nurse just got back to me and the CT department have my scan request with a red dot on it and will be in touch probably tomorrow with an appointment date.  The scan will definitely be within two weeks.  She is not sure why the consultant said that it could be up to two months but that information is not correct.  Feeling relieved.  Thanks all for your support.

EmilyR

Lisa, just read your last post.  For some reason didn't see it before.  Thank you for your very kind thoughts.  Please try to keep your mind occupied so that you don't spend all your time worrying.  I know that is easier said than done.  I have taken up a new hobby and I have thrown myself into it because I know that if my mind is not other things I will just worry all the time.  I know the symptoms such as your bleeding for instance are distracting anyway and can make it difficult to concentrate on anything else but by keeping my mind busy that is the only way I have survived mentally with thise whole thing since it started.  Your CT scans have shown nothing worrying so that it is excellent news and reassuring but I know it will be worrying for you until you get to the bottom of your vaginal bleeding.  I've just read your history and you have been through a lot.  Sending all positive vibes your way and will be thinking of you and sending you healing thoughts.  Stay strong and if you need to have a listening ear, this group is here for you.  xx

LisaCardiff
LisaCardiff's picture

Hi Emily,

Thank you for your message and I have been thinking about you today and hoping you have a date for your CT scan.

I am okay today thank you. I wobble a little but okay. As you said my (week old) CT scan was fine and nothing ominous on it and my GP told me the same yesterday. The bleeding is better today and it is more like the usual discharge from the fistula. My GP said I have a anal vaginal fistula and I looked that up (naughty I know) and they can bleed.

I usually keep myself busy with crochet, knitting or reading. You are right it does help and stops you going mad. Funnily enough, when I was going through everything I didn't think about it, I just wanted to get better and get out of hospital and be home. Now I ruminate over every ache, pain, itch or scratch. 

Fingers crossed for yourself and me and things will be turn out great for us. Please let us know how you get on.

Sending love and good vibes,

Lisa x

-

Oct 2014 Diagnosed

Nov 2014 Chemo

Feb 2015 external & internal radio caused fistula

Sept 2015 Urostomy surgery

May 2016 urostomy redone & colostomy fitted

Oct 2016 readmitted with a blood clot

Apr 2017 cancer hospital gave me the all clear yay & thank you

Sept 2019 admitted to hospital with a bowel obstruction

June 2020 discharged from cancer hospital

Nov 2020 admitted for a bowel obstruction

Feb 2021 admitted with another bowel obstruction caused by scar tissue. Abdominal and pelvic CT scan only showed scar tissue and nothing ominous yay & thank you

Mar 2021 bleeding from vagina. GP referred me awaiting an appointment

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