Metastatic spread

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Not a question I was ever hoping I'd have to ask, but has anyone here who has had curative treatment, been given the all clear for a while, then gone on to get a metastatic spread elsewhere? If so, how did your treatment go, please?

I had the FLOT/op/FLOT sandwich, completed all 4 post op chemo, on the Add-Aspirin and SARONG trials, and feel bloomin' great. However, under the SARONG trial I had a CT scan and endoscopy last November and had the all clear from both, excellent results, except for what they said seemed to be a tiny scar on one lung. They said it might be an infection and I might require antibiotics, or possibly from where my lung was collapsed during the op (and subsequent complications I had afterwards).It wasn't cancer though.

Fast forward to my 18 month scan last week, and this spot is still there and they don't know what it is. They need to rule out cancer, so I am on the merry-go-round of tests again. You'd think I'd be used to it by now, but it doesn't get any easier Sleepy All the anxiety has come back in bucket loads, especially after they referred the scan to the MDT team this week and oncology outpatients phoned this morning (seeing them next Tuesday). 

Just wondering how others coped and what outcomes were for mets? Sorry for the long post.

  • Hi Nicky, I can’t comment regarding experience but just wanted to say thinking of you and understanding the anxiety you must be feeling. My husband also had some rather less than great news today (I’ll post for input later). I didn’t want to read and leave.

    Geraldine xx

  • Dear Nicky 

    I do not have any answers to your questions. Your post prompted me to look at your ‘about’ information. And I want to tell you what an amazing woman you are. So brave and the level of detail that you have included will help others on a similar journey to yourself.

    i know that your anxiety will be being monitored as this is one of the secondary endpoints of SARONG.

    • Health-related quality of life: Measures how the intensive surveillance impacts the patient's overall well-being.

    i hope that the lesion on your lung turns out to be nothing to worry about once all of tests have been completed and this finding just goes down as one that heightened your level of anxiety.

    Best wishes x 

     

  • Thank you Geraldine and Rosie. I have an appointment on Tuesday with 'Medical Oncology' Outpatients to discuss the CT scan. At this stage no-one has definitively said 'cancer', just that they don't know... and of course when you've been through what we all have, your mind always thinks the worst. I'm going in there with the view that it is, albeit hopefully early stages.

    I'm back in 'fight mode' though, and I'll do what I need to do. I'm a determined character, it won't get the best of me without a massive fight! Muscle

    1. I didn't think about SARONG and the anxiety aspect, but after Tuesday I will contact them and mention it. I do feel I need help in managing that side of things, even before this blip. They have mentioned it to me before, when I had forms to fill in.

    I appreciate your words of comfort and support so much. Thank you PrayHeart️

  • Hi Nicky. So sorry to read about your current anxiety. I can't help with your question but want to  wish you all the best. I do know that you are being looked after  by a fantastic team and I am sure they will do everything within their power to get it resolved for you.

  • You are welcome. 

    I believe SARONG involves completing a questionnaire at 6 monthly intervals. These Patient Reported Outcomes are usually how Quality of Life are measured - I assume there will be questions about anxiety. 

  • Hi Nicky F 

    My husband went through the curative pathway Chemo/surgery/chemo like you .His surgery was in Dec 22 and his treatment ended in March 2023 .All has been looking good up to now regarding the OC ,

    However three months ago on a routine CT scan a lesion on his kidney was made a point of concern with the urologist .Fast forward another CT scan three weeks ago and we’re still waiting for the results .His urologist phoned a couple of days ago just to explain the lesion could be a very small hard malignant tumour , a cyst or something else which my husband can’t remember the name of .So now we wait until someone contacts him with the results of the scan .The urologist has told him he doesn’t really know for sure what it is yet but it is being treated as a very small renal cell carcinoma and regular monitoring is all they offer at this stage .If however it starts to grow then action still be taken .A biopsy can’t be taken to at this time either as it’s too small , I think 14 mm was mentioned  .We’ve been told his OC surgery site and surrounding area will be regularly monitored too just as a precaution .

    Incidentally during diagnostic tests almost three years ago a lung lesion was detected during a CT scan .We were told his MDT almost changed his treatment from OC to lung cancer treatment .However whilst it was being monitored  the  lesion disappeared , no one can explain why! It still remains a mystery to this day .

    Hope things turn out ok for you 

    Best wishes 

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