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 !!

ElaineG

Great news @Highkaren. So glad you’ve been to Christies and you have a good consultant in Prof O’Dwyer. Hope all goes well :x::x:

terri m

@Highkaren .wonderful news for you... Being an advocate for our own health these days is what we need to do to get results👍.. Hope everything turns out well :x::x::x::x:

GD62

Marvellous news @Highkaren have met Prof O'Dwyer and you are in very good hands :x::x::x:

Elmac

Hi @Highkaren - need to celebrate - will do so with you at Loch Levens Larder in October. Christies sounds a wonderful resource. Good luck with the oncologist on 26 Sep.
Elaine

Bridget55

Hi @Highkaren that sounds great. Welcome to the Christies gang! B x encouraging news re PIPAC too

SheliasDaughterAngela

@Highkaren that's such good news, shows you essential obtaining a 2nd opinion is and how different the journey can then be. Let us know how your appointment goes on the 26th, will you be bringing anyone with you?

DianeS

Great news @Highkaren, the Christie’s seems to be amazing and everyone sings it’s praises. Mai pleased you decided to seek another optionand best of luck with your oncologist meeting :x::x::x::x:

Bear G

Great news @Highkaren and this emphasises the need for cancer services to be standardised. Well done for persisting!
I’m tagging @Sarah Staff (Support and Information) so she can make sure the right people in the office see your story!
:x::x:

jinnyp

That is fab news @Highkaren - so pleased for you 🙂
The Christie was going to be my next opinion before I can accept that indefinite chemo is my only option - This has made me more determined to get it after my next scan!!
Jane :x::x::x:

Chas

So pleased for you, and in pursuing the treatment @Highkaren :x:

Sasa

Hey well done and great news @Highkaren , thank goodness you are persistent. Hope it all pans out well for you, they are funny about peri mets aren’t they? Mark is asking for a HIPEC referral as his only active mets are peri, but his onc isn’t keen .... 🙄🙄🙄 sound familiar?

Good luck,

Sarah :x:

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: