Recently diagnosed, not sure what happens now?

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Timeline is something like:

12th Sept - Colonoscopy

18th Sept - MRI

23rd Sept - CT

I've heard nothing at all from them since.  Nobody gave me any advice about diet either (I've got a partial blockage... 80% to 90%).  I had to figure out the low residue, small portions, plenty of fluids thing for myself.

Is this normal?  I was kind-of expecting someone to get in touch to tell me what's up.  I have MyChart and the only update on that was Friday 3rd, which added the colonoscopy, e.g. 3 weeks later.

The lack of communication - even a, "we're getting our ducks in a row" letter or call has me confused.

Thanks for any advice you can give me!

  • Hi  and a warm welcome to the board. It does seem quite a long time but I’m wondering if the results from your colonoscopy have only just been received? The next step is usually for your case to be discussed at the MDT (who tend to meet once a week) to discuss your treatment plan then a meeting with yourself to update. 
    I’d be tempted to ring your hospital and ask to speak to the colorectal support team and see if they can tell you when you’ll be seeing your consultant? 

    Please keep us posted?

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi, 

    In my area (south wales) the multi disciplinary team (mdt) meet every two weeks. In this meeting the various professionals discuss what they have seen in the scans etc and develop an appropriate plan and then get in touch with you to discuss it /make an appointment to discuss it.

    They only discuss them when all the scans are complete and they have the full picture so based on your timeline it sounds like you may hear soon.  Did they give you contact details for your team? If so do call as they are so helpful.  If not call the hospital and ask who to contact.  

    i hope that’s helpful. 
    cerysm

  • Thanks both.  They didn't give me a contact or anything.  I just had the colonoscopy then received a phone call to go for an MRI, then a letter to go for a CT scan (the latter at a different hospital - a closer one).

    It's Addenbrookes if that's useful to know.  Nobody gave me a contact or number to call or anything like that.  I might give them a call later on today then.

  • OK I called them and they did the MDT already.  They want to MRI my liver too - presumably something suspect on the CT scan.  They're just waiting for a clinic slot.  

  • Glad you called them and got an answer.  Fingers crossed for a slot soon! 

  •   Good that you’ve managed to make contact with them. I had to have an MRI on my liver too and it turned out to be a harmless haemangioma. These are apparently very common and most people go through life being none the wiser unless they have this sort of scan 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thanks Kareno.  Yes I found out they're quite common anomalies on the CT scan that it's policy to investigate further to rule out anything more sinister.  Though I tend to assume the absolute worst so I'm elated when it turns out to be nothing to worry about.

  • Best of luck through this,   (ps-I absolutely LOVE banger and mash , with baked beans Slight smile) Your last point is so true, that we always think the absolute worst don't we so when things turn out to be ok, or not so bad, the relief is massive. I had a similar timeline to you , with long gaps where frankly I wondered what the heck was happening..

  • Yea, that name is a food fantasy. Am currently on small portions, low residue.

    Got my clinic slot next week.  Will find out what the plan is then.  It's all good.