Incurable

Welcome GemD84

Difficult days for sure for your wee family .

It is so tough to hear the words incurable but it’s really important to hold onto treatable . Bowel cancer that has spread is a bit more fortunate than some other primary cancers as it still has a lot of treatment options . Despite a difficult diagnosis there is a sub group of patients that mount a good response to treatment . Going to chemotherapy straight away can be a good plan as it not only allows the spread to be tackled it can also work on any microdisease as it’s a systemic approach.

I will link in a booklet that goes over the various treatment approaches oncologist have open to them . They are always scanning and reviewing in the background to see if there are other treatment approaches  that could be added in .

Chemotherapy turned my mum from inoperable to operable twice with her liver and her lung tumour was actually operable for once . It’s not without hope but it’s a tough time . We are however here to support you both as you navigate through treatment .

You will see people on the boards you use chemotherapy continuously in a maintenance setting for five and six years . Everyone is very individual and each plan is tailored to individual cell types and locations of spread .

My own mum is still here 13 years later . You can click on my user name to read her story .

Not everyone gets that response but a subgroup of patients do and that brings some hope .

Oncologists won’t comment on how they thing chemotherapy will work until the see the evidence from the scans which is understandable as they can’t give out false hope .

The leaflet I will link in is very good at explaining a bit more about a stage 4 spread from the bowel .

It will take time for the shock to settle I am sure but they will support him through his chemotherapy and make sure his dose is tolerable .

take care ,

Court

https://bowelcancerorguk.s3.amazonaws.com/Publications/TreatingAdvancedBowelCancer_BowelCancerUK.pdf
If you click on this link it will take you to the document .

Please feel Free to ask anything you like . We do have others in their 40s on the forum .

Take care ,

Court 

Thankyou for your reply and all the information i really am grateful.

And thats fantastic news about your mum its nice to here positive stories.

Thanks again 

Thankyou i will give it a read.

Sorry i have a question i currently work part time and my partner is now off work sick im feeling abit in limbo i dont no whether to carry on as normal for now and just see how he reacts to treatment i guess i just dont no what to do? He might be able to take part in a medical trial in Manchester which is an hr and half away plus we have 3 children 12,10 and 6 years. I just dont no what to do for the best. Do u have any  advice please? Thanks again your very helpful.

Hi GemD84

Do you know what clinical trial he is hoping to get ?

I think you might find it helpful to chat this aspect through with our helpline staff . They also have advice on the benefits / legal aspects that I am not familiar with .

They might be able to guide you on how to approach treatment . It is inclined to build up over the cycles in terms of side effects but saying that we have had people on the forum who have actually started to feel better as the treatment works and we also have people who sailed through . It’s so hard to know which way treatment will affect him . 

If you know what trial he is hoping to get I could maybe have a look at what the treatment is and see if we can link you in with some people on similar treatments .

Our helpline staff are on 0808 808 0000 . They would be happy to chat all this through with you .

Take care ,

Court 

https://community.macmillan.org.uk/cancer_experiences/ask_the_expert
 This section might also be of some help to you but you might have to wait a day or two for a reply .

Court 

so sorry to hear your news GemD84 but glad the cancer's treatable. It must be so hard to bear. Sending positive vibes. KathH2.

Hi everyone.  This is the first time I've wrote on here but have used this forum for inspiration and hope by reading . My husband had emergency hartmans procedure August 2021. He was then diagnosed with stage 4 bowel cancer which had spread to his lungs.(6 tumors on lungs) they successfully removed the tumors in his colon.He started the Chemotherapy but was told it would be palliative care not cure. The oncologist was not hopeful to say the least and told him to get his affairs in order. Devastated to say the least . He's 54 and fit and healthy besides this.  Since then he's had 18 rounds of chemo and immunotherapy 2 scans. The last scan he had was in June this year where it showed it had all gone apart from one tumor on lung which was shrinking. They said that a few more blasts should do it. Its been such a tough year, especially thinking of our daughter who was in her last year of university whilst all this going on. I'm just hoping and praying his next scan is completly clear.  Never ever did I think we would get to this stage after his initial prognosis.  I just wanted to let others now in the same position tat there is definitely hope. Love and support to all. Xx

This is amazing Kef it’s a story of inspiration in itself .

What a tough time but also what a great outcome .

I hope the next scan brings more good news .

Its also great having you participate and I hope you think about doing so again . The more voices of experience that do this the more valuable it is to the forum .

You have a lot to share .

take care ,

Court