Stage 4 colon cancer

Hi 

Welcome to the forum . If you click on my user name you can read my mum’s journey through a stage 4 diagnosis. She initially went straight to chemotherapy . Her liver was originally the site of spread. Her chemotherapy was an infusion of Oxaliplatin with xeloda . She had this over two years . She then had surgery . For her lung met they were able to use only surgery which was great as it was keyhole. Chemo was rough but she got through it . Surgery was more short and sharp but each day headed in a progressively better position . She found that easier . She has had over 35 scans but she has had many good quality years in between. 

Initially it felt bewildering and overwhelming but slowly it improved and she learnt to treat it as a chronic condition . The hospital team is part of her life but again our attitude to that has changed from fear to gratitude as they have been amazing at keeping her well for so long .

Any questions please feel free to ask . The first couple of years were most intense but there is a sub group of patients that do well despite a difficult diagnosis.

Take care ,

Court 

Hi Court 

many thanks for your reply I am finding it very difficult to come to terms with being diagnosed with stage 4 it has spread to the fatty tissues I’m my stomach, I have been told that I can’t have any operations only chemotherapy, I have to have a stent fitted on Tuesday and another Biopsy and then they will decide which chemotherapy treatment is best for me .

Totally understandable 

My mum was inoperable too but chemo did actually turn that around . They do review after a set amounts of chemotherapy and the multi disciplinary team regroup and decide the next stage in the process . There is also a group of patients that use chemotherapy over a considerable period of time and have been doing so for five and six years . Bowel cancer in a stage four setting is very much a work in progress . 
Going straight to chemo was actually a very good plan as it not only tackles the visible spread but can hopefully reign in any microscopic disease . 
It takes time to see how you as and individual respond but they monitor a tumour marker called CEA and keep their finger on the pulse .

The stent is a good idea as it keeps the bowel tumour under control whilst chemo takes place . 

We all felt overwhelmed even people like me who was a carer and not a patient. We were trying to find some solid ground . My mum was picked up in a bowel screen and had no symptoms. It was difficult to even feel it was real initially. The world continued to spin whilst we felt lost but it got so much better once treatment actually started and you felt something was actually being done . 
Take care ,

Court 

Hi  court

Thankyou so much for all your information it has made me feel a little more positive  and understand a little more about Things 

many Thanks 

michael 

Hi Michael,

Sorry to hear your news, that initial shock is really tough and takes a while to get your head around.

Like you I was diagnosed 2 and a half years ago with stage 4 bowel and spread to the liver and initially diagnosed as inoperable.

3 months of chemo and 5 weeks of radiotherapy meant I became operable as the tumours had shrunk significantly.

I've learnt that nothing is certain in this journey and there are positives and challenges along the way which we navigate.

I've no doubt you feel overwhelmed right now but as you gather more information and your knowledge grows things will become clearer and less overwhelming.

I hope that helps and keep talking.

Best wishes

Martin

Hi Martin 

im so glad I joined this community forum it has given me so much hope the cancer has spread to the fatty tissues in my stomach and it’s in my lung , I am having a stent fitted on Tuesday, is this something that you had ? I feel more positive already after chatting to you all .

many Thanks 

michael 

Also great to have your insightful contributions ! Thank you !

Court 

Michael when my mum started down this road twelve years ago Oxaliplatin was the new kid on the block . Hardly any options and the treatment approach very conservative. That has developed and only yesterday I saw another new chemo that I had not noticed before ! 
My mum is now considering research to look and see why she responded so well ! 
Sadly it’s not all people but it has significantly changes in approach from when I first joined this forum . That gives me hope for the future . My mum had to get into the top 2 % of chemo responders back then to achieve the response she did . 

Tumours had to be over .5 cm before a scan could detect them , now they were able to detect one of my mum’s tumours growing from 2 mm over two years and removed it at 8 mm before it became a problem .

I wish it was even better for more people but the only thing in anyone’s power is to put your best foot forward as my mum would say and seek out the windows of opportunity for treatments . Now she has other challenges as her liver resections all those years ago have caused complications . 
So we currently are supporting the fundraising for a new Super MRI and do our bit for research . Hoping one day there is even more progress !

Glad you are starting to find your feet !

Have a good day !

Court 

No problem Michael, glad to be of help. No stents for me but a number of ops. I'm currently undergoing chemo, 9 of 12 cycles completed. Lung and liver tumours shrinking significantly, always surprising to me what can be done. Stay hopeful!

That’s good news for you , I’m hoping for the same results when they start my chemotherapy.

many Thanks