Stage 4 rectal cancer currently NED

CxO 3 months ago

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Its been a long old ride for my Dad who has stage 4 rectal cancer.
He had radiotherapy and chemo and then a liver resection.
In recovery for the liver resection his rectal tumour grew back and the only option was TPE surgery which he declined because of his age.
He has had Folfox & panitumamab and is now currently NED and has been for a few months but still on chemo while a decision has been made.
They are saying theres no cure as surgical options are limited and cant have radiotherapy again.
Anyone been in the same boat? What will happen now? Intermittant chemo? Low dose chemo? Watch and wait?
Interested to hear from anyone whos in the same situation.
Thanks in advance

SadieW 3 months ago

Hi CxO, I am “sort of” in this situation and am going to be having a TPE next week. I have had radiotherapy and chemo earlier this year and at the end of that tiny lung nodules appeared but they’re not 100% sure about those yet so they’re keeping watch on them. I dunno what age your Dad is - I am in my 70s so although I feel scared of the operation ‘cause it’s extensive, I am reasonably fit - I think - I hope so am happy to give it a go. Best wishes to you and your father, Sadie.

CxO 3 months ago in reply to SadieW

Thankyou for your reply Sadie.
My father is 73 and is usually fit and well but hes just done 10 months of chemo so isnt at full strength at the moment.
We went to see the consultant yesterday who was talking him through the op and to be honest it terrified him with all the complications etc so hes declined the op.
They have said he can change his mind at any moment and said they will refer him back to oncology who will make a new plan.
Sending you all the luck in the world and hope your op goes well. Wishing you a speedy recovery also

Susan13 3 months ago in reply to CxO

I am in my 60s so younger than your dad. I had TPE surgery last year. It is terrifying and not easy to recover from but I think it's well worth it. I came out of the surgery with 2 ostomy bags... colostomy and urostomy. That was also terrifying and frankly something that gave me pause and made me consider refusing surgery. But I promise you, it is not as bad as people think. I adapted quickly.

I hope your dad will reconsider surgery. I think it might save his life.

RoseInTheSun 3 months ago

My husband also had TPE. He’s only in his 40s so quite a bit younger and although the first couple months post surgery were tough, he’s now enjoying life to the full. 6 months after surgery we enjoyed a long overdue holiday, visiting the local sites and swimming every day. 8 months post surgery he goes on dog walks (albeit a little shorter and slower than before - we’ve made it to 6 miles and his goal is 12!), visits the pub (all too frequently!) and generally lives a very normal life. The doctors have to tell you worst case scenario, and I won’t lie, it’s not an easy ride but in our case is was so worth it and far less awful than we expected.

Whatever he decides I wish you all the best. Not an easy decision and hard to watch someone you love going through all of this. Xx