moms stage 4 crc diagnosis

Hi beomie33 

Welcome to the forum . I am so sorry to hear about your mums recent diagnosis. It is a frightening time for everyone in the beginning .

You have done some homework already and it’s good to get familiar with it all as it does help in the early days of processing everything . Whilst the stats have slowly improved for stage 4 patients I think it pays to remember you are only ever a stat of one . Only her response to chemo determines her outcomes . My own mum had a significant spread to her liver at diagnosis. Hearing she was not operable or curable at that stage was devastating. However chemo can be extremely powerful if they are responsive and it turned things around for my mum twice . She lived for a further fifteen years with constant scans and interventions when required but she had long stretches of being treatment free and she packed in many good times . 
Hope is so important and it can take time to see how her treatment plan works for her . But the whole family gets into a routine and it does feel as though something is being done to tackle the disease . Most stage 4 patients go straight to chemo and that can be a very good thing in hindsight as it not only tackles the visible disease but the micro disease also .

We followed a piece of advice patient gave me . To keep your mind where your body is . Don’t let it slip off into worse case outcomes . It takes a lot of practice and there are good days and bad days . We are most certainly here to help you through both .

Learning to live with uncertainty is harsh ,  slowly but surely you can pull together and move forward . 

They say a stage 4 diagnosis is a marathon not a sprint , and there can be many steps to ned .

Technically my mum was never cured but she lived a great life despite a difficult diagnosis. Some people do manage to treat it as a chronic condition , other manage to become free of treatment and other perhaps not so fortunate. But new treatments are emerging . Some patients are now accessing immunotherapy and that’s only been available since Covid times . This will undoubtedly change the stages given they are over a five year period . My husband used to say stars are beneficial to health economists to plan for future care but not so good for individuals outcome .

Please do ask anything you want and send your mum our very best wishes going forward .

Court 

hi there, thank you for your reply.

we still have likely over a month before starting any treatment, this is such a terrifying time. its especially scary seeing how poor the prognosis is, it looks like having liver/lung mets has a better outcome than peri mets.

trying to not let my mind slip off into the worst outcomes, but im already fearing the absolute worst. stage 4 crc with peri mets seems to be one of the worst types of metastasis to have. still waiting for confirmation on it, but ct is usually used to detect spread and she has already had one (what they were concerned from initially).

thank you so much for your kind words. sending hugs.

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/265495/hipec-surgery#pifragment-16476=3

You might find this an interesting read . Bowel cancer U.K. has some specific forums for stage 4 people and they can be good for seeing how others are managing a spread .

I was in touch over 15 years ago with a young man with peri mets . He became a dad after Hipec surgery . Remained clear . 

The waiting for the results to come in is hard . There are a few hospitals that deal with a spread to that area and certainly in the past they had slightly different criteria for surgery . Some people here have been able to send recent scans for second opinions to these centres of excellence . Volume of disease and location certainly matter in a spread but shrinking it to being operable is definitely the desired outcome . Even in the liver and lung it can be very complicated depending on the volume of spread . My mum had some liver mets that were 5 cm each . They disappeared off the screen with treatment .

The waiting for treatment to start is ever so hard . My mums oncologist reassured us it could have been there for years and not to get too concerned . He even suggested a holiday . Not that we did . 

Does your mum know her cell type yet ? 

Take care ,

Court