T4N2M0 - TPE Operation - Colorectal Cancer

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/new-here-say-hello/203540/expectations-when-going-home-after-total-pelvic-exenteration-surgery

Hi 

I just want to welcome you to the forum . Really sorry that your partner has to face surgery but we actually have had quite a few members recently come through the forum . I am just going to tag in our good friend 
. He is a real source of knowledge and support . Hope is around to help . 

I have also linked in a recent thread so you can read a discussion on the subject . 
I wish him all the very best with his surgery and hope his recovery goes smoothly .

Take care ,

Court 

Hi Ejc89,

Yes I had the very same operation just over 2 years ago. Yes it is indeed a big operation but it can also be curative and has indeed so far been so for me. 

As I have mentioned many times on here in similar responses, I felt like I had been hit by a truck after the operation but within a few days I started to recover. The biggest issues I have had were post operative internal collections which needed to be drained and treated with IV antibiotics. I have also had a few post operative UTIs as well, but they have been treated with a course of oral antibiotics. 

It took me about 6 months to a reasonable level of fitness which was hampered by the collection infection.

I am now fit and healthy most days and have carried out many big DIY and home decorating/renovating projects.

I am able to walk and cycle for several miles.

It will take him a good 12 months to get over the operation providing all things go well.

Make sure the team doing this operation have many years of experience doing it. This is probably one of the biggest and most complex operations performed by the NHS so you ideally need the A team on the job!

Watch out for signs of post op infections and get them treated asap if they happen.

On another note my surgeon recommended it because he felt it would offer the best outcome for being cured of the cancer. They don't normally offer it, unless they feel the patient is suitably strong to cope with a 10-15 hour operation. So the fact they have offered it, usually means they think he will have a very good chance of being cured.

I have lived to tell the tale, and still remain convinced it was my best route to living.

It will not be an easy journey, but perhaps in reality it may be the only journey available for longer term health.

Having said that, George Alagiah on the BBC seems to still be doing well after going down the chemo route instead of TPE.

Best wishes GM.

As ever , thank you . I am having problems with email alerts . Just wondering if others maybe have too!

Take care ,

Court 

Hi my husband was diagnosed in april 2019 with stage 3 colerectal cancer he had radiotherapy and chemo followed a transanal total mesorectal excision .in sept...he recovered well but had numerous adssons for sepsis from collections also had 2 stents in urethral tubes ..couldnt have adjuvant chemo as he was too weak ...in april last year he has reccurence in presacral space ...he is now on chemand targeted therapy having tested for kras gene ...they told him after 6 months they would scan and operate however they are saying no operation as cancer is attached to blood vessels and ligamentso carry on with chemo till end of feb and rescan ...he has no metastise but im terrified if he cant have the op does this mean they can no longer treat and he will be on palliative chemo

Hi 

Your husband had a rough time after surgery for sure . 
Hopefully the chemo will shrink the tumour away from the areas of concern to give sufficient margins for surgery . Not sure what hospital you are at but it might be worthwhile getting a second opinion after the scans are completed . If you have a look at  story you will see a second opinion actually opened up a different treatment plan . I am not saying that’s possible but it is always a good idea to see what some of the surgeons at centres of excellence can achieve. It at least gives you some more information . 
In terms of palliative chemo . There are people doing well with that and on their fifth year of treatment . Although something currently can not be cured does not mean it can not be treated for a long time if he responds well to chemotherapy . It is very frightening waiting to hear if enough shrinkage has been achieved .

How has he being coping with chemo ?

Take care ,

Court 

He seems fine when he is on steroids but when they stop he struggles and feels awful picks up again when his injections to boost white cells finish and then he has another round of chemo ...we are in leicester ..i am a carer and massive outbreak of covid which absolutely terrifies me incase i bring it home managed to keep him safe so far xx

Hi 

I can understand your concern regarding Covid . You sound as though you are being extra careful and I hope he gets the vaccine very soon . I passed quite a few people yesterday in a shop without masks ,  one had forgotten her mask . She quickly put it on but started saying no one should stare at her as she might have a condition . I totally understand forgetting but she was so aggressive. I did say as I passed to be mindful of the people pulling shifts in ICU and people getting treatment just now ! She calmed right down . 

My mum was better on her steroids but day 4 and 5 harder . It’s some cycle for them . 
Do you know if he is MSI ( Micro satellite insatiable) . Might help to know are the emerging Immunotherapy might be a very good option for the future if he is .

Its not easy with the stress you are under , working and trying to protect him at the same time . We are here for you too.

Court 

I have no idea or what that even means we finally have a face to face on 8th feb with oncologist to discuss scans and what happens next with regards to treatment trying to remain positive and strg for him but inside i am full of dread ..he is my childhood sweetheart we have been together since 16 ...he has been through so much already 16 yrs + trying to cure pituitary tumor that was very agesive and grew back 3x until he finally had gamma knife treatment on it in dec 2018 then diagnosed with colerectal cancer in 2019 and again in 2020  he is the most amazing man he never complains even at his lowest points i really hope for some good news xx

Oh  You have something really special going on ! What a lovely relationship . 
He has had such a rough time and to not complain about all that makes him one incredible human being .

Going through all this without the normal medical support structures is really tough ! But hopefully the tumour will be shrinking away from the trouble some areas and allow some form of surgical intervention . If it’s at all possible they will help him .

One thing for sure he can tolerate a lot and hopefully that will work for him .

Take care and send him our very best wishes .

Court