Checking schedule for follow ups post treatment

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Hi everyone

I had my 9 month MRI in May and after a four week wait and lots of ringing up to enquire I have just had a call from the secretary of my colectoral consultant to say that there is NED and my consultant will see me in a year following an MRI in a year's time. 

Now its great to hear the good news but I am sure I should have been seen in clinic at 9 months and then had a further MRI at 12 months with an appt in clinic and not sure if these stayed at 3 months or moved to 6 monthly but definitely not in a year. This is what I was told by my Oncologist before I was referred back to my hospital.

I've told the secretary this and she said she will pass on to my consultant. I havent been happy with this consultant she misdiagnosed me twice with piles and was rude speaking to a nurse about her missing me twice last year and the nurse replying naughty! 

Think will contact my Radiotherapy nurse see what she says. 

Just wanted to see what appt schedule you lovely people have received.

Thanks

Carole x

  • Carol, I agree.  I haven't heard of anyone being moved to annual checks so soon after the end of treatment.  I am checked ever three months but my cancer was advanced, but if my memory serves me right, most other people on here are checked every three months as well.  I am really glad to hear your news too, but that shouldn't mean complacency on the part of the team treating you or from that extremely rude consultant.  In your shoes I would put your concerns in writing and escalate this.

    I am thinking about who else you could contact who will help you in this, and I am hoping someone more knowledgeable that me can answer you too.

    Best of luck

    Irene xx

  • Thanks for your reply Irene i did think the Oncologist had said 3 monthly for two years. I was going to get in touch with PALS at the hospital as i have a lot of concerns with this consultant and also with contact my radiotherapy nurse

    On holiday in Norfolk until tomorrow so will try and do something when i get back.

    Carole xx

  • Have a lovely holiday Carole and I hope the sun keeps shining for you!

    Irene xx

  • I remember you mentioning that incident with the nurse, Carole, and oooooo, that burns me up. 

    I agree that the schedule is weird. I mean, what do I know, but why would your situation be so radically different from everyone else's?

    I think contacting the radiotherapy nurse is a great idea. I'm not a fan of your consultant. Can you change under NHS?

    Hugs

    Suz

  • Hi  ,

    I'm sorry I can’t be of much help on scheduled check-ups as mine were slightly different due to being on a clinical trial but if you’re concerned then yes I would chase it up with as many people as you can as annual checks when you’re only 9 months out of treatment does sound pretty early! Like I say my schedule was dictated by the people that run the trial but it’s definitely only years 4 & 5 that I’ve been on annual checks, I’m sure I was 3 monthly for year 1 then 6 monthly years 2 & 3.

    Enjoy the last day of your hols & let us know how you get on when you’ve spoken to someone.

    Good luck.

    Nicola 

  • Thanks Suz yes I'm no fan of my consultant will see what i can do when back from my hols 

    Carole xx

  • Thanks Nicola

    I am wishing I had gone on the trial i had been offered now as i would have had better care and checks. 

    Yes just off to the beach having a great  holiday.

    Will let you know how i go on.

    Carole x

  • Hi Carole 

    I was advance stage 4 N1, I finished my treatment last April so nearly 14 months post, I’m due to see my oncologist at the beginning of this September so it will probably be around August that I’ll have my 4th MRI, the first MRI they said the tumour had shrunk considerably, that the radiotherapy was still working I had to stop chemo after 4 days, then the last 2 MRIs he said I’m in remission, however when I spoke to him about the pain I’m still in from my bum and I keep getting bouts of fresh bloody , and that couldn’t understand why I’m in pain if I’m in remission he just said I need to pass you over to the colorectal surgeon as that was not his department!! 

    I was thinking that since I’ve been on here lots of people have said about how they was diagnosed with piles / haemorrhoids but all of us now have had anal cancer now all the drs nurses are saying that this is nothing to do with AC but I’m bloody sure there is something in it!!

    Hope you get things sorted and the reason for a long time waiting for an appointment is that they feel you are very much cured take care 

    Laura x x 

  • Hi Laura

    Thank you for your reply. I am so happy for you that your cancer is in remission.  Hope the Consultant you see will find out what is causing your pain and bleeding as that must be a constant worry for you. I still get mucus and a little bleeding when going to the loo. 

    Yes far too many of us on this forum have been misdiagnosed with haemorrhoids, myself like all of us would never have heard of anal cancer so wouldnt have asked could it be anal cancer and could this be checked for. If only .....

    Best wishes

    Carole xx

  • Hi everyone

    Just wanted to update this post regarding schedule for follow up scans and appointments after my consultant had said she didn't want to see me for a year after my 9 month scan.

    I had my telephone appointment with my radiotherapy nurse yesterday and she said she would speak to the Oncologist at the centre i was treated at and get back to me.

    She had just rung back and the correct schedule is 3 monthly MRIs with clinic appt and examination 3 monthly for first year, 6 monthly for second year then going to yearly for myself. So the Oncologist had emailed my consultant with this schedule so i should be getting an MRI scan on August and clinic appt should be 3 weeks after. I havent seen my consultant since February at 6 months as she didnt make an appt after 9 month scan.

    My nurse also asked if i could change my care to another consultant and Oncologist said she could refer my care to a consultant at another hospital near me but he had a long waiting list. I've asked if I can be put on the waiting list as would like to move my care for future appointments. So hope this happens.

    So good job i have my lovely radiotherapy nurse keeping in touch.  She has also sent me a food diary form to fill in and she's ringing in a few weeks to go through it with me to see if this can help with bowel issues.

    I've also been asked if i want to join a group for those being treated for anal cancer to go along and have an informal chat and a cuppa. I've said yes and this will start in a couple of weeks they only have five members at the moment. Also a late effects clinic is going to be set up from September. These are both in the Sheffield area if near for anyone on the forum.

    Carole x