Stage 4 bowel cancer

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LouLoubelle

Questions for private oncologist

Hi all,
I have my appointment with a private oncologist this Wednesday and just wondering what to ask him. I am KRAS mutant type, with liver, peri and lung mets almost 2 years since first being diagnosed with stage 3 bowel cancer in ascending colon. Due to start lonsurf or have palliative surgery to prevent bowel obstruction. It has not been decided yet. I am in a weird limbo at the moment, no chemo, almost 4 months post laparotomy, just awaiting apts. Any help /advice very much appreciated.
:x::x:

Frances Styles

@LouLoubelle, really feel for you, we did ours, it was tough, but a job well done and in place for the future, not for now, don't let those thoughts creep in🤗 Of course you are tired, it's emotionally draining too. As her fittest patient, it makes no sense you feel written off by her, she's gonna have a fight on her hands! Lots of love and strength, Frances :x::x:

LouLoubelle

Definitely @Frances Styles! I just phoned the Macmillan nurse at my hospital and had a few strong words with him. He is going to email the colorectal Nurses and the Dr, but she is on holiday at present. Typical isn't it! :x::x:

LouLoubelle

Thanks @Frances Styles, The colorectal nurse phoned me back and said she would speak to the chemo dept about getting my lonsurf organised. Still going next week to see the surgeon about the palliative surgery. She said how aggressive my cancer was and how sorry she was that I felt so let down. Not doing too well now really. I will have to drag myself back up again somehow. Very sad to see my younger sister so heartbroken.
:x::x::x:

Michelle74

I'm so sorry @LouLoubelle , you've had a very tough day....allow yourself to feel low hun. Its good you made your feelings clear to the nurses today, I hope they will speed up getting you started on lonsurf and get things moving in the right direction. Sending lots of love.:x::x:

Frances Styles

@LouLoubelle, you've made good progress with the nurse, and now it's time to make sure you're geared up for Wednesday, notepad with questions at the ready. It's not easy, none of this is, and it's disgraceful you're having to seek other opinions, but there are so many stories where the second opinion or third has made a big difference, I hope this for you, love Frances :x::x::x:

Lucy118

@LouLoubelle, Good luck for Wednesday. Frances has given you some great advice. Hang on in there. Sending big hugs, lots of love and strength :x::x::x:

LouLoubelle

Thanks @Michelle74, @Frances Styles and @Lucy118. Yes all good advice. I will hope and pray for the best on Wednesday. Going to take things easy tomorrow. :x::x::x:

Forum user

Hi @loulabelle hope you have all your questions ready for Wednesday I always record meeting on my phone so that I can replay a few times at home, as it is so hard to remember what they say in the moment, wishing you all the best take care cheers John,:x::x::x:

louise28

hi @LouLoubelle I second a lot of what @Frances Styles says. Also I think if you are getting a private appt, you have every right to get out of it what you want and ensure that you get the answers you need. It is hard as we dont like putting ourselves in that sort of position, but if you are paying or requesting a second opinion, you have every right!

I enclosed a short letter with my second opinion referral outlining the reasons...basically saying that I wanted to know that my team were following the right course and that, as I am fit and healthy and well, were any other options available. I am aware that the same answer will possibly come back, but I also felt I needed a bit more hope and positivitiy, so even if that is what I get, I will be disappointed but happy enough. :x::x::x:

LouLoubelle

Thanks @louise28, that is very helpful. I will write a letter also to bring with me. Quite nervous about it now it is getting closer. I keep re reading my recent CT scan report in the hope that it won't be as bad as when I first read it. It's just as bad sadly, and awful to see it in black and white. Trying to keep up the positivity and hope. My manager at the hospital phoned me today and said she keeps praying for me and to keep strong and keep eating. :x::x::x:

louise28

It's torture, I would try and avoid reading the report again and again and go with an open mind and see what is said. V difficult but the fact that they are seeing you is good :x::x::x::x:

kawa909

Good luck with your appointment @LouLoubelle hope you get some encouragement and other options from the private oncologist.

Lucy118

Good luck for your appointment today @LouLoubelle. I’m keeping everything crossed for you. Lots of love :x::x::x:

Frances Styles

@LouLoubelle, wishing you all the best for today, hoping for new options for you, keep strong, love Frances :x::x::x:

Pam

Wishing you good luck today @LouLoubelle , fingers crossed here too :x::x::x:

justhope

My love and my hope for you goes with you today @LouLoubelle :x::x:

Molly2me

Thinking of you lovely @LouLoubelle lots of love :x::x::x: