18 Months in remission and new finding last week require further investigation - scared and terrified

Hi All,

I had my curative colorectal resection, liver metastases resection with adjuvant therapy in 2020 and all my surveillance scans were normal from last year but as last week was my third scan which showed normality in all the areas of treatment but CT picked up a 1.5 cm soft tissue nodule in peritoneal cavity immediately below my umbilicus belly button while my CEA tumour marker is very normal 0.56 I'm bit scared and my surgeon recommended PET scan and further investigation.

Radiologist comments in CT was like "it may raise concern of peritoneal recurrence" 

Has anyone faced similar kind of problem.

My surgeon say PET may not pick up activity or it may pick one nodule or it may pick one nodule and identify if any areas.

Have anyone faced similar problem - please let me know I'm bit terrified to go down that route again as me and my family were returning from big trauma experienced in 2020 to normality from last few month even though I'm struggling with side effects of aggressive treatment and surgeries.

please let me know your opinion 

  • Hi 

    So sorry to hear you have had further investigations to endure . 

    My mum had a few recurrences if you click on my user name . Not all that was flagged up on the CT scan was actually cancer when it came to her lungs . Three nodules but the PET scan only had uptake in one . It was removed and the rest have stayed there benign for the last five years . They were not there on her initial scans . But she has had a lot of treatment and it takes its toll .

    If it is a recurrence our thoughts were , caught early and nipped in the Bud before it could do too much harm . Cold comfort for sure but to be honest it did just that and my mum is only here and enjoying life because of robust scanning . 13 years a stage 4 patient .

    It was incredibly hard for her going back to the uncertainty and facing it all again however I don’t think it was ever as bad as the first time in terms of intervention for her . Her first was a combined liver and bowel . She found the bowel the most difficult. 

    I do think the PET scan did add additional information. However I totally get what your saying and hated seeing my mum have to dig deep once again and I do hope it’s something benign especially since you have been back to enjoying life again .

    Did your CEA ride before ? It’s very low . My mum has a low reading anyway but it did rise with her liver and was starting to head up with her lung .

    Take care ,

    court 

    Community Champion Badge

  • Thanks for your reply.. it was reassuring… My CEA was 11 when I started my treatment in 2020 but now it is 0.56 tested last week. 

  • Gosh that is really low ! 
    Hope that’s a good sign .

    Court 

    Community Champion Badge

  • the radiographer mentioned that comparing to images of march and oct 2021 the new soft tissue has grown in size keeping in view the feature of peritoneal recurrence but in all those reports this point was not mentioned at all. Hope I get PET negative and get back to normal.  

  •  today is my PET Scan - please keep me in your thought. Hope it comes negative

  • Hi ,

    I think when they notice something they go back and see if they can see anything again . However that does not necessarily mean in itself it’s malignant . My friend has had liver cysts pop up after treatment . Gave her a terrible fright but all checks came back better .

    Do you have a date ?

    Court 

    Community Champion Badge

  • I have my PET scan today at 2.30 pm, keep me in your thoughts hope it comes negative. 

  • I most certainly will and all the very best ! 
    Love and strength .

    Court 

    Community Champion Badge

  • finished my pet scan yesterday - waiting for doctors to respond.  I'm cold and tensed !!!

  • No wonder  it’s a terrible pressure but hoping it brings some better news . 
    Court 

    Community Champion Badge