My daughter

Hi, , please pop over to the bowel cancer group, as there's people who can help you there. court? (((Hugs))) to you and your daughter

Hello thanks for getting back to me. I know I sound silly but I don't know how to find the bowel cancer forum you mentioned. Can you please help 

Hi  I will attempt to describe!

Go to Groups on the top of this page, press cancer types. At the bottom of that first page is the bowel, colon and rectal, cancer forum.

Press, join and post!

Just dropping in past with the link to our Bowel (colon and rectum) cancer group, this is the place where you will connect with others walking the treatment journey both as patient or family.

Follow the link I've created above then choose ‘click to join' when the page opens.

You can then introduce yourself and post questions selecting '+New' or '+' (depending on your device) you can also join in with existing discussions by clicking on 'reply'. 

You may also find our Carers only and Family and friends groups a great benefit as you will connect with others supporting family through their cancer journey.

The Macmillan Support Services provides lots of information and support. The service is open every day 8am to 8pm and it's free to call on 0808 808 00 00 have a look by Clicking here for more information.

You can also email them, use the online chat and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

All the very best.

See,  , helpful people like Thehighlander pop in to help with direct links. Shall have to learn how to do them!

Hi Gemmary , yes there is always someone looking in to help out.

Look at the picture below. This was what my reply looked like just before I put the rest of the text in.

Once you get to this stage you click on the little box and that tags the person and also triggers an email notification.

All very clever I must admit ((hugs))

Hi, Thehighlander, it was the group link  I wanted to know how to do?

 so the same system works to find the Bowel (colon and rectal) cancer forum

Just type what you are looking for (after the @ sign) and most times you will get a drop down menu where you can click on the link you want 

Hi 

Big welcome to the online community from me too.

Really sorry to hear about your daughter . I have very happy to chat with you about your daughters treatment and also happy to welcome you over in the bowel forum .

It is very frightening to hear someone you love is inoperable and at the height of the pandemic even more so .

I take it she has had some recent scans? How has she tolerated chemo ?

We found it helpful to find out a bit more about the cancer mutations . Has anyone mentioned Braf / KRAS mutations or MSS/ MSI ? This can help tailor treatment options . 
You also mentioned a spread to her liver and peritoneum. My mum had a substantial spread to her liver , but was confined to segments 4 to 8 in her liver . Chemo allowed her to go from inoperable to operable . They were able to take away 73% of her liver . When it comes to spread it depends on size and location . Given her spread is also in the peritoneum she might like a second opinion from Hipec surgeons . They are available in a few hospitals like Christie’s , Basingstoke and I can’t quite remember where Mr Murph practises . Might be Imperial ! I am from Scotland so this is purely from other contributors. Even if it does not lead to surgery it can guide you to the best option for her and that’s the most important thing .

You also might like to look into treatments like Immunotherapy Keytrunda and see the progress being made there . Covid has allowed some limited funding for it .

You also might like to connect with Bowel cancer UK forum as they have some long term patients who have been managing a stage 4 diagnosis and are quite well informed on who to consult with .

Has her ascities gone down any ?

Just to give you a bit of encouragement. Stage 4 diagnosis is often described as a marathon not a sprint . My mum has been on the circuit for a fabulous 11 plus years . If you click on my user name you can read her story .

Stage 4 diagnosis relies heavily on clinical judgements as opposed to protocols in lower stages . One Dr can have a different clinical approach to another . That is why I advocate second opinions . Often the oncologist is happy to participate in arranging them or her own GP if that is a path she would like to participate in . It does not mean she is unhappy with her current team and most are sympathetic to this .

Anyway if you have managed to find your way over to the bowel forum we can chat there .

Take special care . It’s hard watching this happen to someone so special . So I send you much love and good wishes also .

Court