Terrified for little brother

Hichilli_vulpes 

So sorry to hear about your brother . He is very young indeed for that but unfortunately it is rising in younger people .

There are specific treatments for a peritoneal spread . There are criteria for all procedures. They like to treat systemically with chemo to gain control but some centre of excellence do treatments like Hipec . 
You might want to have a look into that . Some people her have spoken about A Mr Murphy who reviewed their scans quickly .

Some centre use different criteria to others so might be good to bear that in mind . They assess the tumour load . But just because someone might not be operable initially does not mean chemo can’t turn that around .

One step at a time . It’s definitely a toe by toe journey .

Take care ,

Court 

Thank you so much for taking the time to reply to me. I know everyone here feels the same, it all just feels like a cruel nightmare.

We’re very lucky to be in London, with 2 centres nearby that do HIPEC - just waiting on biopsy results before they can make a plan. And I’ve looked into Mr Murphy - thank you for the recommendation.

As you say, one toe at a time. 

Once you know his tumour cell type you can narrow down treatment options .

We are seeing some great results from the people who have immunotherapy.

Its the start of treatment for sure and that’s a lot in itself but it’s not without hope .

I used to be in touch with a young American man . He had a peritoneal spread . He disappeared, off living his life but he came back on his tenth anniversary with news of a family now and doing well .

Take care ,

Court 

That’s so good to hear, and yes I’ve looked into the promising news around immunotherapy - fingers crossed! 

Hoping for biopsy results on Friday 

Court has already given you great advice.

I am so sorry to hear your family is going through this with your brother being so very young. Unfortunately, this is becoming increasingly common with young people and it breaks my heart. 

The waiting for a treatment plan is terrible. In many ways, it can be the worst part of the whole experience. Keep yourselves busy and focus on the now as much as possible. The mind imagines one terrible scenario after another and you can quickly spiral into a dark place. Once there is a treatment plan, you'll be able to plan and 99% of what you imagined will be gone. 

Thank you so much for replying - you're completely right. It just feels like such a crazy surreal time, your brain goes to the worst places. And Dr Google is hell.

Trying to keep my parents' spirits up, keep them positive and just ride this out.

My brother is actually handling it incredibly well.

All the luck in the world to anyone and everyone going through something similar.

Update on situation - has anyone had anything similar?

The results of the biopsy came back on Friday - it said benign. We were relieved - but then the doctors told us that they feel it is still cancer, advanced cancer at that. 

So they want to redo a biopsy.

They want to do a needle biopsy - but say they can't give us an appointment until next Thurs! How can they say it's advanced but waste so much time?

It's infuriating and heartbreaking.

I have occasionally seen this come  up where they feel the biopsy has not shown the full picture and I guess it depends on the quality of the biopsy taken .

However one of the things I had wished I had known earlier in the process is the nhs grinds slowly and just when you feel It cant go any slower it bursts into life and they are in theatre before you know it . They would only act quickly in terms of intervention if they felt he was at immediate risk of a bowel blockage . My mums first oncologist said there was no such thing as emergency chemo and to go and have a holiday if she wished . 
This was not how I imagined it . But when it swings into action it does the job nicely .

I do appreciate how frustrating and painful this process is . I think it would be a universal desire to cut this process to be quicker and more responsive.

Thinking of you all .

Court 

Thank you so much Court, we managed to speak to a retired doctor family friend and he said the same. That the difference between starting chemo now or in 6 weeks - would make a minimal difference.

It’s just so frustrating - the waiting for appointments, the waiting for results - it’s agonising. As I know you all know!

Sending love to everyone in the same boat :(

I think most here would say it’s one of the hardest parts of the process . But they do need the cell type to govern him the right treatment if required .

The thing about fast growing cells if they are chemo responsive due to the rate of cell division can be the right environment for chemo to do its best work . My mum had five cm tumours in her liver that literally disappeared on the scan after six rounds of chemo .

Hoping it speeds up for your brother and you never know it may very well be something else .

take care ,

Court