Just diagnosed

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debsJH

Stage 4 spread to liver

I’m in total shock, I have just found out that I have stage 4 bowel cancer spread to liver, they are saying my cancer in my bowel has been growing for at least 10 years and that it is very bulky at 6cm. They’ve found at least 5 tumours on her liver with the biggest at 3.4cm but said that it’s possible it can spread as i may have cancer cells in different places which have travelled but they will be microscopic. They said they wouldn’t operate on the bowel because it would delay my chemo and they want to tackle all of the cancer. They said that it is unlikely they’ll be able to operate on the liver but they’ll send everything over to Leeds for a second opinion. But looks very unlikely due to so many meds of my liver in different places. She said that people usually only live around 2 years with just having the chemo to control the cancer like i have,sometimes people live longer such as 5 years. 😔 I will be having xelox as my chemo in a couple of weeks.
She said the future is uncertain but we wont know more until we hear back from Leeds, Chemo is the only options at the minute, they really don't think Leeds will op as too many meds on my liver. I’m in total shock as haven’t been ill at all only found this due to seeing doctor for HRT picked up anaemia in bloods! (Sorry for the grammar so hard to write this)

Lirio345

Good morning @debsJH, a very warm welcome to the forum but I am so sorry to hear of your diagnosis.

I am going to start by saying that I was diagnosed with stage 4 BC (like you with mets to liver) in January 2015 - seven years ago. Your oncologist seems to be painting the very worst case scenario and we are none of us a statistic so it is you that is important. Statistics are out of date averages and include people who have other serious illnesses for example.

It is quite common for treatment to start with chemo so that everything can hopefully be brought under control. Surgery very often then becomes an option - as has happened to loads of people on here.

You are in shock at the moment which is totally understandable so give yourself time to process this. There are some brilliant BCUK publications that will help you get your head around this devastating news, but the key thing is that we are here for you, so ask anything you want. Take very good care, Kim :x::x::x:

bowelcancerorguk.s3.amazonaws.com/...ncedBowelCancer_BowelCancerUK.pdf

debsJH

Good morning @Lirio345
Thank you for the lovely message it really means a lot, you give me hope. As you say I think my oncologist has given me the worst case, I hope you are doing ok. I will take a look at the publications :x::x::x:

Siona

Hello @debsJH and a warm welcome to the forum. It’s very normal to be in shock and it will take time to process. Check what support you have available locally. There are also organisations like Penny Brohn offering support and online classes www.pennybrohn.org.uk/
As Kim @Lirio345 said, you are not a statistic and what your oncologist told you is about a possible worst case scenario, not your individual story, from there anything can happen and as we’ve seen many times here, the best cases scenarios can happen.
Starting treatment with chemo is normal, it will keep the cancer under control and they can monitor its effectiveness. Also having a second opinion is a good idea and they seem to be on the ball with that.
Lots of love :x::x:

debsJH

Thank you for the lovely message @Siona :x::x:

Liz Blakelands

@debsJH Hi and welcome to the forum. So very sorry for your diagnosis. I remember a feeling of total shock and disbelief that I had rectal cancer. The feeling that you are fit and healthy and how is this happening to you. Things start to get better when you get a treatment plan.

You have had a really tough diagnosis but there are lots of people on this forum who are leading good lives years after a bleak diagnosis.

The forum is a great place to ask questions, find out about treatments and to get support.

Massive hug
Liz :x::x:

Tiffany

@debsJH

Hi there and welcome to the online community that nobody wants to join!!!

I can't give you much practical advice as I am not the patient but my husband was diagnosed with Stage 4 BC with extensive mets to his peritoneum in June 2015. He did very well on chemo for many years (click my name to read story) and has just had a total pelvic exenteration surgery and is currently cancer free. It's been a journey that's for sure but we have three fabulous young adult kids and lots of travelling that we want to do so my hubby has everything to live for.

Take each day at a time, don't overthink things or wondering what if. Hopefully the chemo will do it's job and then you may very well become operable. I have read many success stories on here with patients in the same situation as you.

Sending love, strength and positivity your way. Tiffany :x::x::x:

debsJH

Hi I’ve got my date through to start chemo, Tuesday 25th January. Any tips please? Ie best thing to wear/drink/read/watch etc thanks :x::x:

svr

Hi debs, I am in a similar situation having being diagnosed with 1 bowel tumour in October then finding after scans it had spread extensively to liver. After agonising wait I started treatment this Monday on FOLFIRI and Centuximab. I found wearing comfy clothes, taking snacks and water and stuff to keep you occupied a help. I took my kindle and also downloaded some podcasts (Louis Theroux Grounded) which was quite entertaining and nap when you feel like it. Hope all goes well for you :x::x:

dazedandconfused

Hi @debsJH sorry to hear your news. I was diagnosed in October 2021 and started chemo in November. I’m not as brave as you as whilst I know I have mets to my liver (and one on my lung) I wasn’t ready to hear the detail so no idea how many or how they are distributed.

My chemo bag contains the following: blanket in case I get cold, slippers, iPad and headphones (I recommend downloading the Audible app so you can close your eyes and shut out the world), Queasy Drops to help with nausea, cup-a-soups, water bottle, spare face masks and a hat, scarf and gloves in case it’s cold upon exit.

Good luck :x::x:

debsJH

Thank you all for the replies and great advice, I will make sure I put these items in my bag :x::x:

Lirio345

Hi @debsJH

I would definitely add 2m long charging cable for phone/tablet (Amazon). Best of luck, Kim :x::x:

debsJH

Evening all I had my first chemo treatment yesterday, oxaliplatin and cepecitabine all went well and staff soon make me feel at ease.
When I came home I started with cold-sensitive very strange feeling! Having first bite too and throat spasms apart from these I’m not feeling too bad I know it’s early days but keeping positive mind attitude. Thanks for all the great tips :x::x:

ijp30

Well done on getting through the first one @debsJH. Cold sensitivity and throat spasms are a very common side effect. Take care.