Query about frequency of CT scans after treatment

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Hello, I was wandering if anyone can advise me on the frequency of CT scans after treatment?

After a full hysterectomy and treatment (Chemotherapy, Radiotherapy + Brachytherapy) for Stage 3, Grade 3b Endometrial Cancer - my first after treatment CT scan showed no sign of cancer, which is such a relief.

My Oncologist (who is different to the one I had throughout my treatment last year) has scheduled my next appointment in May (which I think will involve examination). However he said my next CT scan would not be until a years time. I told him that I was under the impression that I would be having a CT scan every four months after my treatment finishes. But he said I would be having a CT scan once a year.

I queried this again a couple of weeks later and I had the same response again. This time I was advised it was only during the treatment that I was having my CT scans every four months. I am so relieved that my recent CT scan was clear but I am concerned as to having just one CT scan a year...especially in light of how advanced my cancer was.

My husband was diagnosed with bowel cancer in 2015 and he had one session of Chemotherapy (he was unable to complete the full sessions due to side effects). He had a CT scan twice every year for five years I think.

I can't but help thinking that I should be having more regular CT scans to ensure the cancer has not come back.

Any advice would be much appreciated.

Thank you.

  • Hi Shorty76


    I'm not able to answer your question as such but I have the same stage 3b and grade 3 endometrial cancer as you.  I completed treatment in April 2020.  I’m not sure what is recommended regarding follow up CT scans, I don’t think all Heath boards follow the same procedure. Have you asked your CNS or perhaps the Macmillan helpline could give you more information.

    I was sent for a scan in December last year after my 2nd follow up oncology appointment because I was very short of breath and was experiencing back pain.  Good news is my lungs are clear and no changes to my pelvic area since surgery but they found an enlarged para aortic lymph node.  My oncologist discussed the results at the MDT meeting in January and they would like the scan repeated in April, to check if there is any change to the lymph Node.

    I’m waiting on a date for the scan hopefully in April before my next oncology appointment in May. I feel like I’m in limbo again just waiting and can empathise with how you feel regarding a recurrence.  This Covid lockdown has not helped and it’s difficult to think of anything else, I joined a group called ‘where now’ of people who had completed their treatment, run by my local Maggi Centre via zoom and it was helpful though I would have preferred to have met up in person.  I do hope someone else will be able to answer your question.

    take care

    Suse x

  • Hi When I saw my Oncologist/Gynae surgeon for my first 3 month post-op consult. I asked if I would have scans on a regular basis but he said scans are usually only done if there's a problem (I was stage 1B,grade 3) It seems it's up to us to monitor our bodies - well that's fine except for the fact I had no idea I had an aggressive tumour growing inside me. If I'd ignored those pink spots on my undies, things could have been a whole lot worse!

    I'd have a word with your CNS and explain your concerns - she should put your mind at rest.

    Sending big hugs, B xx Hugging


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  • Hi Suse,

    Thank you for your reply.

    Ah ok, so you was same diagnosis as me.

    Thats good to hear with your scan in December -that your lungs are clear and no changes to your pelvic area. And I hope your CT scan next month goes well. Yes I can understand that feeling of being in limbo.

    No I haven't spoke with my CNS about this- to be honest I am not sure who my CNS is since my previous one left. 

    Yes the Covid  lockdown has not helped. I started my treatment at the beginning of lockdown last year and it was a challenging period of time. They also had to reduce my Chemotherapy dose due to the nephropathy that I was getting in my hands.

    That sounds good on the group that you joined. Great that there are support groups out there. And this MacMillan forum has been a great support for me too.

    Thanks again.

    Shorty x

    Shorty76
  • Hi MrsBJH,

    Thank you for your message.

    Sorry to hear that you had an aggressive tumour. But good that you went and got checked out. I was the same, my daughter kept on to me to get my symptoms checked out. Its easy to sometimes dismiss certain things, put it down to other factors. But Thank god I did go to the Doctor when I did, as for me too- things could have been a whole lot worse. 

    Yeah I think my Oncologist told me to get in contact if I have any problems. I was just under the impression that I would be having regular scans after the initial treatment.

    I have just recalled that I was told last year that I don't have a specific CNS, as they were unable to allocate a CNS for each patient. I was told that  if I had a query/problem, to ring the hospital and speak to one of the nurses.

    Thanks again for your reply.

    Shorty76
  • Hello Suse

    How are you doing now?  My mum also has a recurrence in her pelvic lymph nodes and para ortic lymph node

    she’s completed two cycles of chemo so far.  Really really praying for the best

    lots of love and best wishes Hearts️Hearts️Hearts️Hearts️

  • Hi Lucki2021

    Thanks for your reply, I’m sorry to hear about your Mum but hopefully the chemo is doing it’s job.  
    My latest scan showed further enlargement in my para aortic lymph node and also several enlarged pelvic lymph nodes. I have been told my cancer can no longer be cured but they will try to control it with chemotherapy I expect to have my first of six cycles by the end of May. This will be my second six cycles of chemo and will only have carboplatin this time as was unable to tolerate paclitaxel previously. I feel completely shattered with this news but hoping for the best.

    I do hope your Mum is coping with her treatment and has a good outcome.

    Take care and best wishes 

    Suse x

  • Hello Suse

    Thank you for coming back to me.  Much appreciated.  I’m sorry the nasty buggers are back but I’m sure the chemo will kill them off!

    my mum has also been told her cancer in incurable.  She’s had 3 cycles so far so is half way through and only one cycle ahead of you.   How are you feeling? Mum said first cycle was not too bad... second cycle was awful but she got the hang  of it a bit by then and she’s found the third cycle much more doable... mum said you have 4 days of feeling absolutely rubbish and then you perk up as each day goes by..   also, with the third cycle she ensured she stayed in bed resting..  with 1st and 2nd cycle she tried to potter around... she found the resting and doing as little as possible helped her symptoms....this time round x

    suse - did you have the nasty buggers in your lymph nodes first time round as well or have they just appeared?

    also, my mum is in a clinical trial.   I’m very happy to share the details with you.  

    please let me know if you are interested.

    lots of love and loads of best wishes xxxx Hearts️Hearts️Hearts️Hearts️Hearts️