Good scan results

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Hi everyone. Wanted to come on and update you on my scan results. I had a CT TAP and pelvic MRIanf both have come back clear SmileySmileySmiley so pleased and greatful.

im also pleased to say that my HRT patches seem to be working g really well and all my symptoms seem to have resolved. 

im starting my new job next week too and I’m so excited. 

Despite all of this I’m still so anxious about reccurance. I know this is probably top of everyone’s worries but I just feel that since I got told I was NED I’ve been pushers aside a little. 

I never got to see my consultant again this time, or my nurse. The Registrar I saw was nice but didn’t seem to know my case and told me they were moving me to 6 monthly scans. 

i questioned it and he said they only scan 3 monthly if metastatic dosease (which I was) then he changed his mind and said oh I meant for active metastatic disease. 

I know this isn’t the case as most on here have 3 monthly scans so I just left it and was goi g to wait and see what the follow up letter says.

what’s your thoughts? X

  • So good to hear from you, Ker! I'm over the moon that your results remain good!

    Many of us experience the pushed-aside feeling. I sure do. Whichever doctor I take a problem to, it seems that they say it's somebody else's issue to deal with. Sigh.

    Can't help you with the scans. I didn't get ANY until I was a year out of treatment, and no more until I've been out another year. Just 6-monthly DREs and anoscopies.

    Suz

  • Hi  ,

    Firstly huge congratulations on the fantastic scan results Tada

    My surveillance following treatment may have been a little different as they were governed by the clinical trial I was involved in & also I was diagnosed stage 1 so that may also have had an impact. If I remember correctly I was reviewed every 3 months for the first year then 6 monthly for the next 2 years & for the last 2 years I was only seen once per year which I found quite scary so I can imagine not having the security of the 3 monthly check-ups & scans feels a bit unnerving for you. If you’re in any doubt ring your consultants secretary & request a telephone appointment with him/her & clarify your surveillance plan moving forward then you’ll have a clearer idea of what’s to be expected. 

    Nicola 

  • Hi Suz I have noticed a couple of times you have said you are only having 12 monthly scans. I was having 3 monthly scans and was concerned about the constant radiation exposure to the body so I suppose it’s difficult to say which is best. One good thing I have been told is they can tell quite a lot with the physical method. I don’t know whether it’s a worry to just have one every 12 months or every three/four months? 

  • Great news and great news about your new job. Upwards and onwards is is that the other way around?

  • Hello Ker25

    That is brilliant news, I am so pleased for you on all counts - and good luck in the new job too, all very exciting!

    You and I were both Stage IV at diagnosis, so I can make a direct comparison of treatment.  When I last saw the oncologist, she said that when my scans had been clear for two years since any active treatment, then they may think about scanning me at longer intervals.  She said that the majority of any recurrence happens in the first two years so they keep a very close eye on everything in that period.

    My thoughts are that I would push very hard for three-monthly scans until you are at least two years clear since the end of treatment.  I have had CT and MRI scans each time except for the 15 month check which was a CT scan only.  The three months pass really quickly so it does make for quite frequent nail-biting waits but I can live with that in the reassurance that if anything does reoccur hopefully it will be caught in the very early stages.

    I do hope you get clarification and it is a solution that you are completely happy with - please let me know how you get on.

    Irene xx

  • Hi Jaycee, yeah, that is something to consider. I'd questioned the lack of scans, but it was Red who told me that her doctors told her that a DRE and anoscopy by an experienced gastroenterologist (and mine is great) can reveal more than scans. The radiation is also a consideration.

    But the fact that they don't do it because insurance won't cover more frequent scans gives me pause.

  • Ridetbred, I think it may be the difference between staging - because I had metastasis to the lungs, the scans check those as well.  But I take Jaycee's point about the harm that scans can do, we are caught between a rock and a hard place!

  • Thank you for sharing your good news love to hear good news posts Heart eyes congratulations on your new job too Tada

    I do get how you are feeling anxious moving to six month scans think we all have similar worries. I've just moved to six month scans and it seems a long wait without any checks. I try to get on with enjoyingSee no evil my lfe but there is always that worry of reoccurrence particularly in the middle of the night See no evil

    My consultant wanted to move me to yearly appointments from 9 months as she wasn't aware of the protocol for anal cancer so i got in touch with the oncology dept and the oncologist emailed her and said I was to be seen 3 monthly for a year then move to six monthly.

    So i would query this as you will only be getting anxious and worrying if you don't. 

    Best wishes

    Carole x

  •    I was told by my oncologist the same as what both  &   have mentioned here about physical examinations (DRE) & scans, my original diagnosis of stage 1 SCC anal cancer was undetectable on both my diagnostic scans (MRI & CT) but on physical examination my colorectal surgeon told me he could definitely feel my tumour. I think the Dr’s don’t want you exposed to the radiation of the scanners any more than necessary but as I said before considering you also had metastatic disease I would just call & speak with your consultant if possible just to hear their thoughts on this & to air your concerns. 

    Wishing you all the very best of luck in your new job this week.

    Nicola