I’m distraught please help … cancer recently diagnosed and I’m all over the place !

Hi Marella2023 

Welcome to the forum and hope this can be a soft place to land in a difficult situation.

The terminology is hard to process but once you get over that stage not curable definitely does not mean untreatable and my mum has been under the palliative umbrella for 141/2 years . Last year she recurred for the fourth time and just completed a further ten months of treatment . You can read how her team treated the spread to her liver by clicking on my name . Not everyone gets these results but she is certainly not alone . 

Her liver after two years worth of treatment ended up getting 73% of it removed and it has remained clear since 2010 !

Hearing someone has a spread is very difficult but bowel cancer is actually a bit more positive than other spreads as it has a lot of treatment options .

Please do come here and share as we can help carry the load this brings and add some hope too.

Going straight to chemo can be positive as it allows them to get straight to work stabilising the disease . 
Take care ,

Court 

Hi Court, thank you for replying. I wish your Mum all the best in her journey. I mentioned to the colorectal nurse who is my partners key worker yesterday that  we want to get married and have we got time ? She told me to ask the oncologist but when I said I hear that some people on palliative care have lasted several years and her reply was no not years . I don’t understand why she is saying this to us and not the dr ? We both feel like we’ve been told it’s terminal which I know cancer can be . They have moved quickly in getting him sorted with a stoma . They have just done it the other way round , stoma then chemo. He may have the gene that shows it’s inherited as his dad died in his 80s from bowel cancer . Thank you again for replying… I’m trying to keep positive and hoping our wedding request is approved so I can finally be his wife !Something I’d hoped for for a few years . He’s been told that he won’t work again too… leading us believe the worst however my firmed who has had bowel cancer has t worked since for several years . 

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Did they mention how involved the liver is ?

I will link in a booklet you might find helpful .

Have a chat with his consultant as it sounds like two different opinions being talked about .

Certainly they are inclined to work from the worst outcome and see if the chemotherapy is effective and you can hear a change in the language as time goes on . My mum was 67 at diagnosis and 81 now .

Keep focused on the wedding . That is a wonderful positive thing to do and a great distraction too .

Court 

www.macmillan.org.uk/.../treatment-for-secondary-cancer-in-the-liver

https://www.bowelcanceruk.org.uk/about-bowel-cancer/advanced-bowel-cancer/treating-advanced-bowel-cancer/spread-to-the-liver/

These two links will show you treatment options . Criteria exists for all treatments but going straight to chemo is often the starting point and depending on results they review as a team and add in other approaches where possible . This certainly what I have gathered here .

Court 

Hi Court the dr said that looking from the ct scan it was in several parts and that if there were 3 segments that can be saved they would… not sure exactly. He did say that they were pushing for thencologist to get involved but then the biopsies he had taken in the 23rd Dec … 8 of them were inconclusive so they looking at a liver biopsy now on Thursday. Thank you A change in the language ? 

That makes sense . There are eight segments in the liver . My Mum had disease from segment four through to eight .

However segment one to three were clear and allowed her to get to surgery . However one tumour was abutting a blood vessel and the chemo shrank that back and opened up surgical options .

There are centres of excellence for the liver and after chemo they are good places to link in with .

Court 

Great thank you  … I already feel better talking to you as it’s a minefield and so scary as you said about the  terminology and that . I’ll have a look at those links . Thank you xx

Hi Marella2023 ,

You've had some great advice and comfort from court  already but I just wanted to throw in my experience which will hopefully help.

I was diagnosed just over 3 years ago with extensive spread to the liver, inoperable and things were looking very bleak.  I was very lucky and had a good response to chemo which led to various surgeries and radiotherapy which I won't bore you with but you can click on my name for my story!

I know the desperate situation you are in right now and I promise it will become easier when a treatment plan is in place.  The Onc and Nurse have no way of knowing how your husband will respond to chemo so I'm not sure why the nurse would say "not years" particularly when all of the biopsies, etc have not been collated yet.

Hopefully you won't have to wait too long for things to get moving, in the meantime, distract yourself with the wedding plans and try to get your husband to exercise, even a walk in the fresh air if he's able.

Take care and keep us updated. 

Michelle x