Welcome to the community Maggie although I'm sorry that your cancer has come back.

Unfortunately I can't answer your questions but our cancer nurses will be back tomorrow so do give them a call if you'd like to have a chat with them about this. They're available Monday - Friday between 9a.m - 5p.m on 0808 800 4040. Do be sure to discuss this with your practice as well.

Wishing you all the best on this second journey Maggie.

Kind regards,

Steph, Cancer Chat Moderator

Hi Maggie, I' really sorry to hear that your cancer has returned.

Like all medical treatments, surveillance following bowel cancer is based on the best available evidence

The National Institue for Health and Care Excellence (NICE) guidelines for follow up are linked here for you to have a read of if you like but your follow up in terms of CT scans sounds very thorough.

Best wishes

Hi Maggie,

I'd like to start off by saying thank you for your post and that I'm sorry to hear that the cancer came back. 

I also share your concerns regarding the length of time between scans.  I had a kidney removed some weeks back and still on the rocky road to recovery post op. 

My consultant told me that the cancer was removed with 'a good margin' but i'm worried that my next scan isn't until July 2020, especially as i'm allergic to the contrast dye which means the imagining is not as clear as when a dye is used. The radiologists/consultant appeared to have ruled out the first suggestion which was: to give anaphylaxis meds prior to the ct scan.

I have another meeting with the cancer nurse tomorrow and will mention my concerns about the duration of one year before my next scan.

I understand the concerns which i believe are due to minimising exposure, but its still a worry from one scan to another - 12 months is a long time.

I stumbled upon this website yesterday and after reading many posts, it is comforting to know that this well managed forum exists.

Regards Maggie and hugs from Millie x

Hi Millie

So sorry you are in this position.

I saw my oncologist today to talk treatment.  He did understand my concerns regarding yearly scans and I really think NICE needs to look at this again. 

I am now back to 3 monthly appointments including scans for each. 

I know it is disappointing you cant have contrast but because i should have spoken up at my November appointment  and asked for a scan which I will always regret I believe you should ask I'm assuming you have six monthly appointments - so you will have your next appointment Nov or Dec.

I don't want you to live with the same regret.

My cancer grew and spread so fast we are all different and need different monitoring.

Millie I wish you the very best and it would be nice to keep in touch with our progress.

Love Maggie  xxx

Hi Maggie,

Thanks for your words of encouragement and its reasuring to hear that they have had a re-think in terms of the duration between appointments.  

The hospital gave me an appointment with my consultant in July 2020. 

I had an appointment with one of the specialist nurses as one of the wounds is still problematic and i was able to voice my concerns.  

I'm struggling at the moment with my pancreas so this has become my main concern.  I feel better knowing that i have the support of two nurses and they seem to have become my voice when it comes to the consultant as they work closely with her which makes it possible for them to air my concerns. When I spoke to one of the nurses today over the phone, she even offered to bleep one of the pancreatic nurses to give me advice even though she knows my pancreatic appointments are at a different hospital.  I'm feeling more 'listened to' now.

Thanks once again Maggie xx

Morning Millie

I'm glad you have good support.

I will be praying for us both.

Maggie  xx