Decembeard

Stage 4 bowel cancer

Highkaren

Wow...Christie’s update

Had my consultation with Christies and knock me down with a feather Christie’s MDT are suggesting I could be operable as the primary tumour has shown good regression from chemo. ........very different picture than my oncologist painted with “ stable” scan a few weeks ago
No mention of shrinkage or ever considering surgery.

They were surprised I hadn’t been kept on chemo given my response and believe it’s the surgeon I should have dialogue with and not the oncologist as it’s not her decision. Professor O Dwyer will write to my oncologist and directly to the surgeon to suggest they relook at my case and if they are not willing to operate then I can request a transfer through the Scottish health board to Christie’s

She believes I will end up with an ileostomy but that this would eventually happen anyway. She thinks we should park PIPAC for the time being and concentrate on debulking primary tumour and deal with other things later.

Loads to take in and questions to be asked in my next oncology update 26 Sept.

Disappointed that my oncologist seems to be acting as a first line of defence in getting to the surgeon and has never told me of any shrinkage.....wonder whether peri mets are still as bad ....I think she has decided the course of action without giving me all the information !!!

Just shows why a second opinion is necessary.

Christie’s will in all likelyhood have PIPAC up and running by the end of the year so hang in there people who are interested. Prof is also willing to advise on best places in Europe.

Any advice or comments welcome especially for what to expect of an ileostomy and any prep for potential surgery

Away for a large glass of something to digest all this !!

kevinr

Yes @Sasa it sounds very familiar. My Onc put Hipec down as experimental. I had mine 3 weeks ago where they removed all visible signs of disease. Experimental my left butt cheek...

Baxter2

Great to read you've had HIPEC @kevinr !

Where did you have it in the end and how are you doing?

K💜💛💚💙❤️

Seashells

So good to hear your news @Highkaren but shocking that your oncologist seems not to be giving you the whole picture. I second Lizalou's advice, eat well and get fit while you are waiting for surgery. An ileostomy can be a bit challenging to begin with but once you've worked out what food's it doesn't like and found the right bag (trial and error) it really shouldn't be a problem.

I'd love to be a fly on the wall when you next see your oncologist :)

Do you ask to see the scans or copies of scan reports? My oncologist can be a bit difficult but my surgeon is happy to show me scans and print out reports during my appointments with him - it really helps me to understand what we are dealing with. :x:

kevinr

@Baxter2 I had it on 22 Aug at Basingstoke. I got home last Tuesday. I’m still taking max painkillers as my innards get back to some sort of function following the operation. 3 tumours out, no bag. I feel so lucky to finally get there after being told I was incurable by chemo.

Baxter2

Great news @kevinr!!

It's still,very early days so do take it easy. Remember it takes 6 months to recover from CRS and HIPEC. It can sometimes feel like progress is very slow or even non existent but you will be moving in the right direction overall I'm sure! I was in Hospital for just over a month after mine but recover I did and have never looked back!

Sending lots of love and very best wishes

Karen💜💛💚💙❤️

Highkaren

@Seashells ...no she doesn’t share anything with me, scans, results,copy letters...despite asking ! Wish I could video my meet...maybe some stony silences. I need to be careful not to alienate her though !

Elmac

Where do you live @Gypsy? - if you are coming down on the bus i could meet you at the bus stop at Kinross (behind Sainsbury's) and drive over to the Larder and then drop you back at the bus stop to return home afterwards as I shall be staying at Cliesh.
Elaine

Sean

Delighted for ya @Highkaren ;):x:

jandals

So pleased you pushed for this and got it! We are in a limbo place just before the second lot of scans.

My partner has been told he is inoperable due to peritoneal spread and liver mets.., had 6 months of folfori and cetuxab which at 3 month scan came back with good shrinkage results fingers crossed it has shrunk more but the consultant said even if it is shrunk more he would not think an operation was a good idea... which confuses me.

He said it had spread too much on the lining or something and that it would be very very complicated... the hospital we are at in London doesn’t do hipec and if the results this time come back good or excellent or even not good should we ask for a second opinion?? How do you go about this?

I have seen some good consultants recommended on this site do you approach them direct via their hospital? We do not have much money and no access to private insurance unfortunately so it will have to be NHS (i do so so so love our poor underfunded NHS!!) who would you recommend? For us travel wise not having a car and with two kids 6-9 (who still do not know anything other than that daddy is a bit poorly sometimes) it would probably be easiest if it was near or in London but I want him to have the best rather than what is easy..,

Sorry about the rant....
XK

Highkaren

@jandals your oncologist or gp can refer you , get them to write to the hospital even if you try christies ( and I would as they seem leading in Bowel surgery as do Basingstoke too) you don’t have to travel for a consulatation they will issue a report or telephone consultation. The thing is you want someone to examine your husbands scans and see if they agree with the direction currently being taken.......you can never have too many opinions I believe. It should be relatively straightforward as you are not crossing healthboards eg Scotland to England like I am and cross funding needs to be approved through health board application

jandals

Thanks that’s great advice... so people don’t usually have to travel up for a second opinion I didn’t realise that!! Have a lovely evening - K

jefferswife

Hi great news all round , my hubby s oncologist has also said that hipe c is not an option as he has peritoneal spread , I live in Wales does anyone know where I could go for a second opinion and how to go about it .Many thanks :x::x:

Baxter2

@jefferswife

Why don't you try Basingstoke for opinion on peritoneal spread and possible surgery?

K💚💜💛💙❤️

soph86

Wow @Highkaren this is an incredible development!

HH79

Hi @jandals if you’re London, get GP to do 2nd opinion for Jamie Murphy at Imperial- they deal adv cases and like Christie, have seen people have HIPEC after a no via Basingstoke,
You can google Jamie he’s been af Basingstoke and USA. His emai is online too. Good luck! :x:

HH79

@jefferswife get GP to do 2nd opinion- Basingstoke, Christie Manchester, Imperial London & Good Hope Birmingham all do HIPEC. Good luck!!! Xc

Highkaren

@jefferswife ...leave no stone unturned, write to them all, what have you got to lose....it’s amazing how different surgeons take different views . Good luck :x:

jandals

That’s great advice thanks so much!!

Quote from @HH79:
Hi @jandals if you’re London, get GP to do 2nd opinion for Jamie Murphy at Imperial- they deal adv cases and like Christie, have seen people have HIPEC after a no via Basingstoke,
You can google Jamie he’s been af Basingstoke and USA. His emai is online too. Good luck!