Anyone know any surgeons ?

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

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

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 🌻🌸🌼💐🌷

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.

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

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

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.

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.

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

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 🌸🌼🌻🌺🌷

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.

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.

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 ! 👌🏻

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

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 🌸🌼🌻🌺🌷

Thsnk you so much

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

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

Sounds like a great plan @stage4dude! Keep us posted if you can?

Lots of love,

Karen 🌼🌺🌸🌻🌷

Hi everyone and thanks for the previous messages.

So the team at Guys had hubbys scans reviewed by their large surgical mdt and decided it was no. The large main tumour with bladder fistula could be operated on but the general gist of what was said was that in so doing, the recovery from the op would generate growth in the body to heal and recover from the operation that would also accelerate the liver and peritoneal mets and they weren’t prepared to do this. This was felt to be too much of a risk particularly given the chemo resistant KRAS mutation.

We kind of get all that but if anyone can explain the following I’d be so grateful: why is it that some surgeons won’t operate unless they can tackle all of the cancer everywhere it shows and others seem happy to take some parts outs d try to address remaining bits in other ways. There are many examples of the latter in messsges in this forum.

Obv every individual situation is so specific…. But at the moment hubbys quality of life is so poor we just think an op would be worth a try to alleviate the pain and infections caused by the main tumour for an end of life that is bearable.

Any thoughts gratefully received

I'm sorry to read your update @stage4dude. It's not the news we wanted to hear. I'm also sorry that I cannot explain the rationale for the decisions surgeons make but maybe your oncologist can help explain things to you both? Do you have further plans for another surgical opinion? I can't imagine how frustrated and upset you'll both be feeling especially as you've mentioned your husbands quality of life is poor. I'm sorry I can't offer more. Perhaps you'll get some further suggestions if you post on BCUK's stage 4 Fb group?

Sending lots of love to you both,

Karen 🌸🌺🌼🌻🌷