Stage 4 bowel cancer

You can find information about advanced bowel cancer on our website, including our Treating advanced bowel cancer booklet. You can also join our Living with stage 4 bowel cancer Facebook group.

stage4dude

Anyone know any surgeons ?

Hello again,

This community is amazing. Within five seconds of logging on I’d learnt something very useful about my husband’s difficult KRAS mutation. Thank you.

I was wondering if anyone had had experience of being refused surgery and had then found a surgical team prepared to look at a difficult case? My husbands main tumour has not responded well to folfox or irinotecan so it’s back to the drawing board to some extent whilst still looking at chemo too.

Any tips on helpful and expert bowel cancer surgeons gratefully received :x::x: thank you.

Jane39

Hi @stage4dude
Sorry that your husband is in this position.
I don’t have any personal experience but I’m sure others will be along .
St Marks is a specialist colorectal hospital so may be worth looking there ?
Best wishes
Jane :x:

Hans

Good morning @stage4dude. I really don't know as I think every case is different. I do know someone with kras mutant who did have an op. So don't give up, maybe the onc will know. Your dear hubby must be very fit for any operation I believe. you both must be so worried.
I will be thinking of you and Yr family

Baxter2

Hi @stage4dude,

I was told inoperable and incurable back in Jan 2016 and not expected to live beyond the end of that year. My treatment worked well to reduce my liver met and peritoneal mets so I sought second opinions for oncology and possible surgery in Basingstoke (which is a centre of excellence for peritoneal malignancy) I had successful liver resection then Cytoreductive surgery and HIPEC done there in Jan and March 2017. (I live in Fife) I'm not sure where your husbands mets are so difficult to advise. I've seen many people seek opinion form Jamie Murphy at UCL (I think) so you may wish to contact him. I believe you can do this yourself. Hopefully someone will have his contact details reading this but google may be helpful?

Sending you both lots of love and my very best wishes,

Karen 🌻🌸🌼💐🌷

ijp30

Hi @stage4dude,

I think your best bet would be to look at the specialist cancer centres as they are more innovative and deal much better with more complex cases.

When you say the tumour has not responded, has it grown or has it just not shrunk enough for surgery yet? In my Mum's case (who is also KRAS mutant), the bowel tumour was too large to operate initially so it needed to shrink before they'd even consider it.

mountainwoman

Hi @stage4dude I'm sorry to hear about your husbands issues. It can't be easy for you. I think you should find out why he is being refused surgery. Is it because the tumour is too big or the cancer is not stable? You can get a second opinion from one of the specialist hospitals( St. Marks, Christie, Basingstoke). Which hospital might depend on where the cancer has spread to.
I have the KRAS mutation and haven"t heard that being given as a reason not to operate and have had surgery twice. Take care

HH79

You could get an opinion from Jamie Murphy at Imperial email is Jamie.murphy2@nhs.net :x::x:

stage4dude

Wow. Again thank you all so much for your kindness and your useful information. We haven’t been given very specific reasons at all, just that it’s too risky. Well everything is risky in this context so we’re looking again. The spread is to liver and apparently the peritoneum although that wasn’t mentioned except as a possibility until last week when it was mentioned again. A massive problem has been the total lack of face to face contact ever since diagnosis in Feb last year. It’s so difficult to build relationships and know even what questions to ask. Thankfully you guys are helping 😍 and we see the oncologist in person for the first time next week so we’re saving up questions.

stage4dude

Hi all

Here’s an update which just underlined a rather bleak outlook really. Hubbys kras mutation cancer is resistant to folfox and folfiri and main tumour still growing. He has mets on liver and peritoneum which are stable on last scan but anyones guess how long that will last. Oncologist says he has two other chemo options but isn’t hopeful. Hubby off chemo right now as is being referred to Basingstoke and also someone at guys is looking at it regarding surgery. Apparently Basingstoke referral screening takes a while so it’s stressful as goodness knows what the cancer will do in the meantime. We got some more detail on things but everything is still a bit up in the air. At the outset of treatment in February trials were mentioned but they weren’t yesterday and we forgot to ask. Just all seems a bit hopeless.

stage4dude

Ps thanknyou the kind people who shared Jamie Murphys contact details. We will be contacting him too.

Baxter2

Good morning @stage4dude,

I just wanted to flag up a couple of things following your update above.

Firstly, I wondering why your husband is off treatment whilst awaiting referrals to two centres for possible surgical intervention? You mentioned there were another couple of possible chemo options and I wondered if now would be a good time to discuss trying one of these to attempt to get the cancer under control? If surgery is to go ahead, they often look for reduction and/or stability prior to operating so it may be worth having another chat with his oncologist about this?

The other thing I wanted to mention was the closed Facebook group, 'Living with stage 4 bowel Cancer U.K.' your husband may wish to join? There's lots of friendship, support, knowledge and information on there too specific to stage 4 patients.

Sending you both lots of love and my very best wishes,

Karen 🌸🌼🌻🌺🌷

Up Shit Creek

Mr Arun Quyn at Leeds Teaching Hospitals deals with complex cases. My knowledge is limited though, so I don't know if he would be able to help or not.

stage4dude
Quote from @Baxter2:
Good morning @stage4dude,

I just wanted to flag up a couple of things following your update above.

Firstly, I wondering why your husband is off treatment whilst awaiting referrals to two centres for possible surgical intervention? You mentioned there were another couple of possible chemo options and I wondered if now would be a good time to discuss trying one of these to attempt to get the cancer under control? If surgery is to go ahead, they often look for reduction and/or stability prior to operating so it may be worth having another chat with his oncologist about this?

The other thing I wanted to mention was the closed Facebook group, 'Living with stage 4 bowel Cancer U.K.' your husband may wish to join? There's lots of friendship, support, knowledge and information on there too specific to stage 4 patients.

Sending you both lots of love and my very best wishes,

Karen 🌸🌼🌻🌺🌷

Thanks so much - we’ve been told he needs to be off chemo for a while before surgery so he’s stronger for surgery and can weather infection threat better. The mets are stable but main tumour on the march. Guess we’ll have to see what they say 🤷🏻‍♀️ . thanks for the tip about the fb group I’ll pass that on. Thanks for thinking about this.

stage4dude
Quote from @Up Shit Creek:
Mr Arun Quyn at Leeds Teaching Hospitals deals with complex cases. My knowledge is limited though, so I don't know if he would be able to help or not.

Thank uou so much for this. Another name in the arsenal ! 👌🏻

1234annie

St Mark's Mr Antoniou, World renowned for complex Colorectal Cancer treatment :x:

Baxter2

Hello again @stage4dude,

Yes you do need to be off chemo for 6-8 weeks prior to elective surgery being performed. I guess that what I'm trying to say is that, as you haven't yet had the initial consultation to look at this as a possibility, the period off chemo may be significantly longer than this? I wonder therefore, if this would be useful to discuss with your oncologist since you mentioned you were a little stressed about what the cancer would do being off treatment. Just a thought.

Sending lots of love,

Karen 🌸🌼🌻🌺🌷

stage4dude

Thsnk you so much :x::x:

Quote from @1234annie:
St Mark's Mr Antoniou, World renowned for complex Colorectal Cancer treatment

stage4dude
Quote from @Baxter2:
Hello again @stage4dude,

Yes you do need to be off chemo for 6-8 weeks prior to elective surgery being performed. I guess that what I'm trying to say is that, as you haven't yet had the initial consultation to look at this as a possibility, the period off chemo may be significantly longer than this? I wonder therefore, if this would be useful to discuss with your oncologist since you mentioned you were a little stressed about what the cancer would do being off treatment. Just a thought.

Sending lots of love,

Karen 🌸🌼🌻🌺🌷

Thanks so much Karen. I think depending on what the first guy says this week - if it’s a no we might go back to the oncologists and discuss timings and chemo again. If it’s a yes from the first guy then great we’ll do that first. thanks :x::x::x:

Baxter2

Soumds like a great plan @stage4dude! Keep us posted of you can?

Lots of love,

Karen 🌼🌺🌸🌻🌷