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Beating Bowel Cancer Community

Younger people with bowel cancer

Jonathan25

Update

Hi all,

Thanks for o @Tiffany for checking on me via Facebook, this was very very sweet. After my clear scan in may I had my colonoscopy follow up last Monday. I am please to say it was clear. I was told they would probably take some biopsies from the site of the surgery but they didn't need to. They have said a blood test in Jan and a quick meeting in Feb then a follow up ft scan next may. I feel ok about that but feel it's a long way off, has anyone had anything sooner (would be a year since my previous scan)

Jonathan

nat

Fab news@jonathan25. Hope you are getting on on well :x::x::x:

assiren

@Jonathan25 - Hello! I'm wondering about timings for check ups too. Coming up to a year since the end of my treatment (12 x Folfox 5FU) and because I pushed for one, was given a CT scan in May which was, thankfully, all clear. I'm meant to be having a colonoscopy, scan and blood tests in November, but haven't heard anything! Feel very lucky to have got to a year, but It's quite anxiety inducing isn't it?! :x:

GD62

hello @Jonathan25

Glad to hear you had good scan results, all the best :)

Jonathan25

Does anyone know the timeframe for scan results on a Friday? I’ve got my 1.5 year (2nd) scan on Friday and just wondered as I got a letter through for...September 😳.

chris61

Hi @Jonathan25, I had my CT scan on a Friday at the beginning of April (I was T3 like you - Op Aug 17, chemo Nov-Jan) but had a long 3 week wait for the outcome which was, thankfully all clear! My Onc meeting was set before I had notification of scan date which was presumably the reason for the wait. September sounds like a long time to wait for results - it would be worth checking with your team why, as something seems to have gone awry. Good luck.

1234annie
Quote from @Jonathan25:
Does anyone know the timeframe for scan results on a Friday? I’ve got my 1.5 year (2nd) scan on Friday and just wondered as I got a letter through for...September 😳.

My scan is booked for 25th a d follow up July!! My nurse always said if there is anything to worry about they contact you straight away. So no news is good news I think. :x:

mikey83

@Jonathan25 evening mate, hope all is well.
Results can be a week or two, and i my follow up in clinic is usually 3weeks after the scan, im to impatient to wait tho and always call them up 😂.
As @1234annie said tho, no news is good news. Give it a week and then call them, as i can fully understand waiting until sept is too long.

Mikey

Caraeliz24

Is the September with your oncology or surgical team?

Jonathan25

Sept is surgical team. I heard from my nurse today saying she will send the results in the post and should arrive in about 10 days. The post? Anyone else had this?

Jonathan25

Thanks for the replies too :x::x:

mikey83

Hi @Jonathan25 to be honest ive never had mine in the post, but always in a follow up clinic. However i do know of other people who have had them in the post.
Stay positive, the waiting is a nightmare, i would just ask them for a call, that way you can put your mind at rest and relax some more.

Mikey

nat

Call the nurse who can look on theIr computer systems :x:

Jonathan25

Ok, I’ll call her next Friday to find out what’s going on. If there’s something to discuss will they talk over the phone? Does anyone know?

Jonathan25

Ok so results are in...over the phone so a bit of a blur.
Here’s the background information... I’ve had 3 scans in total 1) at my local hospital just before surgery 2nd) at the Christie. 3rd and most recent at my local hospital.
My latest scan showed a small sub mm dot on lungs which I had in my 1st scan (but not my 2nd) as I think they have my 1st to compare but not my 2nd. Anyway
They also found a sub mm dot on liver that they say is highly likely to be a cyst. This hasn’t been reported before.
My colorectal nurse has said they don’t allow patient copies of the report so I have asked my gp and they have said they will go through the report with me.

I’m just not sure about this sub mom dot. I’ll post more when I’ve got the report. My colorectal nurse did say it can be down to the interpretation of the radiologist.

Jonathan

Lizalou

Hi @Jonathan25

I am sitting here waiting for my colorectal nurse to phone me to discuss my ct results within the next 2 hours, so know how you feel. My nurse is happy to see me face to face but we thought a phone call would be quicker. But it is obvious that any minor queries can escalate into a major panic over the phone!

Reading carefully through what you have written, it would appear that the report is just extra detailed and hopefully your GP will be able to reassure you.

Worst case scenario, a minor blip that has been caught early, but much more likely to be an extra observant specialist. Last time, my scan picked up degenerative spinal damage, nothing to do with cancer but explained my back pain!

Best wishes :x::x:

Jonathan25

Ok so my notes read: there’s a tiny hypodensity of the right lobe liver. Too small to be categorised, possibly a cyst.

Conclusion reads: if there are clinical concerns then an mri would be helpful to categorise.

Nurse quickly discussed over the phone but I’m really not happy with what she said to now getting the paper copy of the report. I’m only like this as pre diagnosis I was given a sigmoidoscopy and was meant to have a colonoscopy but an email wasn’t sent (took a. Year to diagnose)

Cea has always been 2 but I have never been told what it was pre surgery. My nurse said I won’t have a scan for 3.5 years now as I’ve had my two after surgery. She said my cea will be checked but I’m not counting on that. I have pushed my gp to ask for a mri but not sure.

Has anyone gone private for a liver scan mri? How much are they?

Any words of advice would be appreciated.

Jonathan

Jorton

Hi @Jonathan25 I'm sure its nothing to worry about as cysts can show up from time to time. I have an area in my lung that hasn't changed in 3 years but it can be worrying.

I never had my CEA checked when I was diagnosed so have no reference point. Currently its at 1.2. Two is well inside the limit which is around 5.

If you can afford to go private for the scan I'd consider it, fortunately I've been private all the way through via my work scheme. It just quickens up the results process.

Good luck

Sean

Absolutely push for the mri Jon. Think you can get em privately for about £500. Your nurse will be able to tell you your previous CEAs. Good luck.

Caraeliz24

@Jonathan25 I would push to get MRI if they aren’t clear. I had spots on liver they thought were cysts because of cystic nature and couldn’t take a biopsy to check. They were to put me on watch and wait to see if they have changed. However, MRI and review with liver team confirmed small scattered spots were mets - I’ve had chemo and surgery and I’m clear now.
Any concerns at all and I’d push back - at the end of the day it is your life. Whilst it’s probably nothing to worry about why take that risk.

Jonathan25

Thanks guys. Appreciated. Waiting for mri now.