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Gg k

BRAF V600E

Anyone out there whose been genetically tested for BRAF mutation and got a positive result?
I've only just realised the potential significance reading through my past notes.
I was T2N0M0 RIGHT HEMI.
It seems to mean that the mutation can lead to cancers in other parts of the body ?
And that regularly screening should be done not just on the bowel ?
I know we shouldn't Google but ..
Anyone got any knowledge or experience of this ?
Thanks :x:

Baxter2

Hi @Gg k

I believe there are quite a few forum users affected like you are.

I'm tagging @HH79 who may be able to help. (Hope that's ok with you HH? )

Sending al my very Best wishes,

K💜💚💛❤️💙

Gg k

Hi @Baxter2 .
Thanks for the tag.
:x:

HH79

Hi @Gg k - I would go back to your team to check. Quite a lot of us as BRAF that’s mets but to the best of my knowledge, any mutation can move to other parts of the body. Makes sense more likely with BRAF as its aggressive but if you were Stage 3 and clear scans, would think resolved? I’m tagging the BRAF clinical experts here if can help! @david watt @sophia
:x::x:

Buzylizzy

I asked if the lung tumours were from the bowel or new cancer as they don’t react to the chemo as well as other mets and my oncologist said it was from the primary in the bowel. I have mets in various places and it’s all down to the BRAF as it’s so aggressive. No time for any other primary cancer to start growing!! I think that having BRAF at any other stage other than 4 I’d want to have regular check ups. Best to talk to your oncologist I guess? :x::x:

GD62

Hi I am KRAS mutated and oncologists won’t do BRAF test unless I get referred for clinical trial. So my hunch is I maybe potentially BRAF but who knows but from October new patients will be checked which is right as we should all know how we stand and get the right treatment rather than picking from an outdated list of financial cheaper drugs. Anyway good luck having chemotherapy now so passing time with a rant 👍💋

Gg k
Quote from @HH79:
Hi @Gg k - I would go back to your team to check. Quite a lot of us as BRAF that’s mets but to the best of my knowledge, any mutation can move to other parts of the body. Makes sense more likely with BRAF as its aggressive but if you were Stage 3 and clear scans, would think resolved? I’m tagging the BRAF clinical experts here if can help! @david watt @sophia

I was given Dukes A as my staging - guess thats stage 1?
No chemo just surgery as T2 NO M0. Clear bowel and 2 full CT Scans in last 3 years. But 38 polyps some the nasty removed pre cancerous and 2 /3 cm Thanks v much for your reply. I don't have a team as such . Just made a big fuss about an incomplete colonoscopy leaving 2 polyps not removed and told ii could go 3 yrs till next colonoscopy. They hadn't read my notes from previous hospital !
Thanks again x

Quote from @HH79:
Hi @Gg k - I would go back to your team to check. Quite a lot of us as BRAF that’s mets but to the best of my knowledge, any mutation can move to other parts of the body. Makes sense more likely with BRAF as its aggressive but if you were Stage 3 and clear scans, would think resolved? I’m tagging the BRAF clinical experts here if can help! @david watt @sophia
Quote from @Buzylizzy:
I asked if the lung tumours were from the bowel or new cancer as they don’t react to the chemo as well as other mets and my oncologist said it was from the primary in the bowel. I have mets in various places and it’s all down to the BRAF as it’s so aggressive. No time for any other primary cancer to start growing!! I think that having BRAF at any other stage other than 4 I’d want to have regular check ups. Best to talk to your oncologist I guess?

Gg k
Quote from @Buzylizzy:
I asked if the lung tumours were from the bowel or new cancer as they don’t react to the chemo as well as other mets and my oncologist said it was from the primary in the bowel. I have mets in various places and it’s all down to the BRAF as it’s so aggressive. No time for any other primary cancer to start growing!! I think that having BRAF at any other stage other than 4 I’d want to have regular check ups. Best to talk to your oncologist I guess?

Thanks for your reply.
I don't have an oncologist.☹ I suppose because consultant said that surgery was the end of treatment and no chemo.
Ive seen a colorectal consultant once in 2 years since I moved. At the moment as gastro consultant is supposed to review my case after next colonoscopy. Very frustrating.

Buzylizzy

Oh @Gg k! I see why you’re frustrated then. That’s not good for the nerves and mental state. Perhaps you need to speak to your GP? Do you have a good relationship with them? I hope you get somewhere soon :x::x:

Gg k

Thanks@ Buzzylizzy.
My GP is great and as helpful as she can be.
I'm going to get my 9th colonoscopy done then request a colorectal consultant appointment first directly then with GP help if necessary. I figure that the gastro consultant I've spoken to on the phone whilst she says she will review my case isn't a cancer specialist. They have this weird division at my hospital where when you're just having surveillance it comes under gastro for colonoscopies and bowel CTs and full CT is colorectal - very annoying !
And all this came about cos I was organising and reading old letters a few days ago- then suddenly realised what the BRAF mutation could mean in the genetic report.
Not a happy bunny but I think I need to just get this colonoscopy done and go on from there as It would be pointless to try for an appointment before that.
Thanks for your reply .
:x:

Liriodendron345

Hi @Gg k, I am not positive for BRAF, but just wanted to point out that using the search box in the top right hand corner brings up over 200 posts which may be useful. Wishing you luck in your research, Kim :x:

Gg k

Hi @Liriodendron345 .
Thanks
I don't seem to have a search option in right hand corner 😢.
Or I'm being dense lol
:x:

Gg k

Just found it haha :x: