New diagnosis with upsetting prognosis

Hi  and a warm welcome to the board. I’ve attached a link to a booklet that includes how to tell people. I think sometimes ‘when’ to tell people is also difficult as there will be a lot of questions that you may not be in a position to answer yet. You might want to wait until the biopsy results are back but it depends how much people know already? 

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

Im sure court will be along shortly but if you click on her name then you can see that her mum has had successful treatment for liver secondaries. 

Please stay away from google - it is out of date and downright scary in places. There is a lot of treatment available for bowel cancer so hopefully your team will be able to get back to you with a plan quickly

Take care

Karen x

Hi 

Welcome to the forum . What shock for you . If you click on my user name you can read my mum’s story . It depends on lots of variables including size and location on the liver but it is not without hope . There is a subgroup of patients who continue to live a good life despite a difficult diagnosis. My mum did one of the first bowel screens in our area back in 2009 and had not one symptom so it came as a shock to discover she not only had cancer but a spread to her liver . She was inoperable . However universally most people go straight to chemo in that situation . It not only allows the visible disease to be treated but the micro disease . 

Once I had a good look at the research we noticed a subgroup of patients that continued to do well despite a difficult diagnosis and that gave us some hope . It takes the drs a while to know how you respond as an individual so it is very difficult at the beginning but sometimes that language changes so hold onto that Hope .

Bowel cancer that has spread is actually quite fortunate to have treatment options compared to some other primaries . My mum had a bit of forwards and backwards for a couple of years . She responded very well to chemo despite it being difficult. The disease shrank considerably and she made it to surgery . A very quick recurrence as some microdisease was still there . Back to another round of chemotherapy . Again great shrinkage and this time she went to a centre of clinical excellence for the liver . The surgeons there are super . They removed 73% of her liver . It regenerates although a very odd shape .

Some others use treatments like radio frequency ablation again there is a criteria. Others use chemotherapy in a maintenance setting and on the boards you will read of people in their fifth and sixth year of treatment . 
Now some people’s cell type is suitable for the new Immunotherapy treatments and opening other windows of opportunity.

It takes time to get the cell type together , find the right plan for you and see if you can mount a response so it is very negative at the start . However if you search Star74  you can see her story of treatment too as she is currently in the middle of dealing with it .

I will also attach a link , might be the same one as Karen   . And you can see the options the team have at there disposal. 

My mum will be 13 years since diagnosis that his summer ! Thanks to her team that kept seeking out windows of opportunity as they presented themselves , she actually got discharged last summer out the blue and classed as cured !

In the early days the only way we could process it was to treat it as a chronic condition and slowly chip away at the tumour load . Do you know how affected your liver is ? My mum had five mets at diagnosis. One was 5cm .

A lot to take in and some drs are better than others at delivery ! 

As anything you like .

take care ,

Court 

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

We also have a helpline and the nurses would be happy to chat to you .

0808 808 0000

The other point you know what your dealing with know and the reality of that at this point my mum respectfully asked for them not to go any further with prognosis. It’s entirely up to you but she found it unhelpful to continually focus on that aspect .

Take care ,

Court 

Hi 

That certainly is a shock for you and it will take a while to process all of it, especially with no symptoms.  I was expecting to have a few piles taken care of and was led into the private room to be told of the tumour and then later scans showed extensive spread to the liver.

I didn't tell anyone until all the results were back and I knew exactly what I was dealing with and what the plan was.

I was deemed inoperable for a long time and started chemo straight away. I vividly remember asking one of the nurses if an operation would be possible in the future if the tumours shrink enough, she said it looks unlikely.  I'm very happy to have proved her wrong.  I had a liver resection in Nov and am half way through radiotherapy to treat the primary.

It will seem like ages to get the biopsy results and meeting with the oncologist but there will be a lot of work going on behind the scenes to get you the right treatment plan.  Once the treatment starts you will find your inner strength. 

I found courts mums story inspiring.  It's a tough diagnosis but don't give up hope.  

Michelle. x

Thanks everyone. This has been so helpful and inspiring. I will keep you all posted.