Newly diagnosed

Hi Blamelouis

The news you’ve just had is hard to take. The multidisciplinary team will draw together multiple strands of expertise and experience to offer you the best possible treatment options to address the disease. And what was incurable not so long ago can be cured today. 

There will be people in this group who’ve had similar diagnoses and I hope you find the support, care and concern helpful. We’ve all been through horrid treatment, operations, ups and downs. Thank you for sharing today, and I’d encourage you to lean hard on us, as often as you need to. 

Thank you 

Hi

This must be devastating news for you but there are so many people on this Forum with incurable but treatable!

I was just reading about George Alagaya the news reader who is 8 years post diagnosis for Stage 4 Bowel Cancer!

So the fact that you feel well is a big positive and there will be a treatment plan for you!   I always say read court’s mum’s story!  Such a wonderful, positive story!

Good luck!

Welcome Blamelouis

What a difficult day for sure . Trying hard to find some solid ground was how I remember it and I was only the relative .

https://bowelcancerorguk.s3.amazonaws.com/Publications/TreatingAdvancedBowelCancer_BowelCancerUK.pdf

When you have more time this leaflet is a good read and shows you the treatment options open to treating a stage 4 diagnosis. My mum had a significant spread back in 2009 in her liver . My sister could hardly climb her stairs after seeing the liver scan . However she went straight to chemotherapy and gained stability over the spread . If you click on my user name you can read her story as her team navigated through various hurdles with her . After two years she actually got 73% of her liver removed . It regenerates and it remains clear and has functioned well . I am going to tag in Star74 as she also has had treatment for a spread to her liver and her situation may also give you some hope .

Some people use chemotherapy in a maintenance setting and you will see people on the boards in their six or seventh year doing well and living a good life despite a difficult diagnosis. 

Most people with a spread go straight to chemotherapy and it does take time for the oncologist to see how you respond as an individual and if they can add in other strategies to the treatment program they will . They are always working away monitoring the situation even if it does not feel that way at times .

It might surprise you but we got into a good routine and the staff were always on hand to assist .

Bowel cancer is a bit more fortunate than some other primaries as it has a lot of different chemotherapy options depending on your cell type . My mum had a few active years on treatment but then caught a bit of break . It’s very individual but therein lies the hope .

She was diagnosed back in 2009 and continues to do well . She was 67 at diagnosis and like you felt well . That is a good position clinically .

I think it’s fair to say until the oncologist sees how you respond to treatment they will remain guarded so it’s best to prepare for that . Other treatments have opened up since my mum was diagnosed and hopefully they are helping people . 

I hope you get a good treatment plan in place and the spread is brought under control .

We have a helpline here if you ever need to chat 0808 808 0000 they cover all aspects from treatment , emotional and financial advice .

Macmillan has also teamed up with Bupa to offer six free counselling sessions . 
We are here to support you .

Court 

Thank you so much ..your story has lifted a bit of the impending doom weight dumped on me today . 

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/207887/stage-4-hope-11-1-2-years-later/1591831#1591831

Here is a wee visual from a few years ago giving a wee wave . That was ten years after her liver resection . I will need to update it soon as it’s a few years out of date .

No need to read the thread but thought it might give you a little hope . 

I will look out some information on exercise tomorrow  as there is some research around the benefits of that . My mum is now participating in research on long term survival . 
Also remember your GP is part of your team and greatly assisted us all in the first few weeks when the wind was firmly taken out of our sails . 
Once treatment starts it does feel as if something is being done to tackle it . My mum cut her hair shorter only to discover she would only get mild thinning with the chemo she was on .

We also have good threads on treatments but one step at a time .

A tough day and lots of love and care required .

Court 

Jacquiw10

Just read in the news this morning that George is back at work reading the news . 

How inspirational is that .

Court 

Hi Blamelouis, I was diagnosed with T4b tumour in 2018, aged 55 & well, just like you. Had emergency surgery, no stoma required & as no nodes positive & no spread detected had 6 months of mop up chemo. Tolerated it pretty well. Scans all clear but then in September 2020 became unwell with obstruction near duodenum. Had another emergency surgery & after another scan revealed 2 lesions in both sides of liver started palliative chemo. Devastating news but after a year of chemo discovered both liver tumours had shrunk significantly & were operable. Sadly for me that didn’t go ahead as just before Xmas 2021 I was found to have 2 positive nodes in peritoneum. However, chemo can have a positive effect on liver spread as in my case & I would urge you to stay positive. I’m just keeping my fingers crossed that the chemo has a similar effect on the peritoneal spread & while I know it won’t cure the disease it may well keep it controlled, hopefully for many years to come. Scans booked for next week to see whether chemo has had any effect on the peritoneal tumours, fingers crossed it’s good news with no growth detected, shrinkage would be even better news. Hoping that you get good response to treatment & all I would say is try to stay strong, there are lots of good outcomes for lots of people in our situation, Freebird

Thank you Freebird that’s an amazing story and I hope and pray your scans are a good positive outcome for you and thanks for taking the time to reply.

Hi again, you’ll see I don’t post on this site very often. I’m a really private person most of the time but your experience sounded so much like my own I felt I had to reply. I have found that just by reading some posts it’s helped me stay positive & focused & while I won’t say it’s always been an easy journey what I would say is, you can get through it. It’s been almost 4 years since I was diagnosed & I’m still here, feeling well most of the time & looking ahead. My son has his school prom in July, I’ve just helped him choose his suit, he looked great & it’s doing normal things like this that have helped me to get through each day. There’s a lot to look forward to for all of us, stay well & strong, Freebird