Stage 4 bowel cancer

DMR700

Stage 4 with liver mets

I’ve recently been diagnosed with stage 4 Bowel cancer which has spread to lymph nodes and throughout my entire liver. They are telling me that due to the extent of the disease, I will never be eligible for surgery and it’s incurable. The plan is to get me surgery to put in a stoma (purely to avoid risk of Bowel obstruction, not removing primary tumour) then give chemo to try and mitigate symptoms and extend life.

I have a 7 month old baby boy who, along with my husband, is my world, so I’m not about to take this lying down!

I’ve read so many stories about people with similar diagnoses where chemo shrunk tumours sufficiently to make them eligible for surgery. However my oncologist has said this is not going to happen in my case due to the extent of the disease. So maybe the good news stories were from people where it wasn’t all 8 sections of the liver affected?

I know I have a hard road ahead of me. I have no idea how long that road will be and don’t think there is any benefit in knowing. I just want to live every day to the full and fight this horrible disease as hard as i can!

Interested in anyone else’s stories!

Zara

Everything crossed for your results :x::x:

charleyb

Tons of luck with your scan results @DMR700 , i`ll keep everything crossed for you :x::x:

So in terms of Charlies scans he had an MRI, CT and Pet scan on diagnosis, he only had the pet due to the fact he had a large solitary lung met, they expected to find para aortic nodes and smaller mets.
He then routinely had CT scans to see how the cancer was reacting to chemo, then before and after surgery he had an MRI, hes had one recently to check the join for the reversal. As part of his follow up after treatment he will have CTs and bloods, if his cea rises he will have a pet scan. I`d definitely ask your team why you have only had CTs. :x::x::x:

mem

Hi, again @DMR700. Just wanted to add, as I didn't say, that I'm NHS and there does seem to be a difference between scan 'types' and their frequency when you're private.
Still got my fingers crossed btw 🤞🏻🤞🏻🤞🏻😘:x::x:

david watt

@mem @DMR700 sadly it all comes down to economics. Ctscan about 200,pet scan about a 1000. Surgeons have bigger budgets than oncologists on NHS as they aim to be curative. I had a pet scan before surgery to remove the primary tumour when stage 3 and aim was cure. Since then stage 4 and about 10 ctscans. Other issues to consider are each scan gives you radiation and can increase the risk of other new cancers. Plus with a pet scan you are radioactive ☢ for 24 to 48 hours and are told to avoid pregnant 🤰 women and young children. Mri is in the middle in terms of cost, and again mostly used when considering surgery.

DMR700

SCAN RESULTS ARE IN!

Further good response to chemo, my onc has requested a liver MRI and a PET. Funny after I posted a question last week about these! So don’t want to get my hopes up but hoping this will lead to options. Her biggest concern is a couple of lymph nodes in my back next to major blood vessels which could be problematic to remove. She doesn’t want to put me through a major liver op if it’s not going to be curative and I could possibly end up in a worst situation if it grows/spreads whilst on chemo break for surgery. But the fact we are even having this conversation is great! We are in a much better position than we were 7 months ago. Initially she said in her experience we’d need a miracle to get to surgery!

The lymph nodes are a concern but I’m taking each small victory, one step at a time! F U Cancer!!

Hope this gives you some hope @cant believe it :x::x:

Has anyone had a similar experience with lymph nodes??

And thanks to everyone for your continued support on this bumpy road, you’ve all kept me sane and given great advice, special mention to my forum mammy @Baxter2 !! :x::x::x:

Lexi

@DMR700 Well I have to say that is BLOODY BRILLIANT news, keep it up :x::x::x:

determinedjoan

Fantastic news ! Delighted 4 u; yes defo gives us all hope - thanx 4 sharing . Wishing u all the v best, love , hugs & healing vibes :x:

Baxter2

Awww, blooming fantastic news @DMR700!

Thank you for the special mention!! I'm truly honoured to be your 'forum mammy'!! My heart went out to you when I read your very first post way back, especially as you were the same age as my biggest boy! On we march!

Loads of love

Karen 💛💙💚💜❤️

charleyb

@DMR700 Just amazing!! I rem your very first post also and just look at you now! Keep positive and keep focused on the end goal, your story will give hope to so many. Big hugs and i hope you celebrate in style :x::x::x:

cant believe it

@DMR700 have been thinking about you wondering how you got on with your results and this is fantastic news am so happy for you , you definitely are an inspiration , sending warm congratulations hugs 🤗 Amanda :x::x::x::x:

Clancy

@DMR700, what a fantastic turnaround for you! Delighted for you. I am having. PET scan tomorrow because they have seen a few enlarged lymph nodes. I have had 2 liver resection and my outlook is, they wouldn’t be spending all this money if they weren’t able to offer options. Take care, sending you hugs.:x::x:

DMR700

Thanks everyone! I’m a bit worried that these nodes are going to cause problems but will just have to wait and see..

Has anyone ever had nodes tested to confirm cancerous or can this only be done by removal?

Jaap

The PET scan will be a good indicator if the distant lymph nodes are cancerous. The PET scan will give SUV (standard uptake values) in "hotspot" areas which may be cancerous. It depends how low or high the SUV whether the hotspot is deemed cancerous.

Jaap

Great development in your treatment by the way @DMR700!
Good job by your medical team, your supportive family and friends..and most importantly you! 👍

DMR700

Thanks @Jaap thisis really helpful!

GD62

Hello @DMR700 good luck with it and hope all goes well :x::x::x:

mem

Really fantastic news @DMR7OO! I totally agree with you. Grab every little victory with both hands and hold them tight 💪🏻.
Good luck with your MRI and PET too, they must have heard you!
Lots of love 😘 :x::x:

Susie15

Hi
@DMR700 I'm so pleased for you. Our journey is full of ups and downs and so unpredictable. 🤞 things continue to improve for you. Sending you love and best wishes Sue :x:

LexiStar

I had a lymph node biopsy, it’s called a fine needle aspiration or something. My problem was in the groin though, that is what prevented me from having surgery. My lymph nodes are now clear after a lot of chemo and an operation may be on the horizon! Your results are fantastic so far, amazing :)

DMR700

Thanks @LexiStar your profile is very encouraging! :x::x: