What's going on??

Lisa70 24 days ago

12 replies
47 subscribers
532 views

Hi everyone

I'm so worried but trying to be strong for everyone else so thought I would post here.

Diagnosis T4 N1c M0 last year. Finished chemoradiotherapy December 2025. MRI scan in May this year should no sign of tumor and no evidence of diseased tissue. However some activity in 1 small lymph node so had PET scan in June. This showed lymph node had sorted itself out but there was some activity at the original site of the tumor.

I still have an active fistula in that area which I think may be infected due to increased discharge along with consistency change over recent days. It's also a little sore. I'm having a biopsy week after next.

How can the diagnosis change so much in a couple of weeks? If there hadn't been a lymph node issue, I wouldn't have had the PET scan and been no the wiser! I can't seem to get a decent answer from my oncologist or colorectal surgeon, only that any scan is just a snap shot of that particular moment in time!

Even though I know it could be scar tissue or the fistula (particularly as it seems to be going through a period of inflammation/infection) I'm obviously worried about it being cancerous cells, despite having the 'all clear' a few months ago. I really don't think I can go through this again, so soon.

Thanks for providing a safe space to vent

Lisa xx

Irene75359 24 days ago

Hello Lisa70

You must be worried, I am not at all surprised and I am so sorry that you have this hanging over you. I am not a medic and my medical knowledge is purely what I have picked up along the way. Prior to treatment the PET scan shows possible cancer spread which appear as 'hot spots'. Many hospitals don't do PET scans after chemo/radiotherapy as so many areas show up but these hot spots are inflammation and scar tissue after treatment. The MRI scan can show thickening (that happened to me) but that doesn't appear as a 'hot spot'. Nevertheless, I had to go for a sigmoidoscopy to check the area and they showed the photographs of my anal canal with visible evidence of proctitis but nothing else to worry about.

So I am hoping that this will be your experience too. I am sending the very best of wishes that your biopsy shows nothing and that the tumour site is just a bit angry at having being thoroughly zapped.

Big hug

Irene xx

Lisa70 23 days ago in reply to Irene75359

Thank you so much for taking the time to reply Irene. I'm feeling much more positive today and your reply was a reminder not to jump to a worse case scenario! I tell myself to deal with the facts, as and when I get them, but sometimes my mind runs away with me.

Thanks again, I really appreciate all the knowledge and experience you share in this group - I have found it invaluable throughout my journey.

Lisa xx

Flowerpot26 23 days ago in reply to Lisa70

Hi Lisa70

I think we all jump to worse case scenario after being diagnosed, I am definitely an over thinker. Hopefully it will be the fistula, take care, try and stay positive xx

Hope4life 23 days ago

Lisa,

I am sorry you are going through this worry again. I hope it is nothing more than inflamation and you can breathe a sigh of relief. I like those words "all clear" try to hold on to those.

Kindly,

Kathleen

Lisa70 22 days ago in reply to Flowerpot26

Thank you Flowerpot26.

Lisa70 22 days ago in reply to Hope4life

I have everything crossed! I feel like I took three steps forward and two back. Hopefully it will turn out to be nothing important

Lisa70 12 days ago

Had my biopsy appointment this morning and there was nothing there to biopsy! It was the fistula! I'm so relieved. Thank you again for your reassuring words, they were so helpful xx

Dan the man 12 days ago in reply to Lisa70

I’m so pleased for you. That’s great news! What a relief. Now you can relax this evening.

Hugs

Happyflower

Bungle1 12 days ago in reply to Lisa70

Brilliant news. X

Flowerpot26 12 days ago in reply to Lisa70

So happy for you, best news xx

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