Diagnosed with colon cancer in December 24.

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Hi everyone following my diagnosis I am going into hospital in two days for a Right Hemicolectomy. As you can imagine I am pretty scared. Not just about the surgery but I received a letter yesterday informing me that after my biopsy the testing showed the presence of BRAF V600E variant. I have read that this in a faster growing & aggressive cancer. I am concerned that there is little or no follow up treatment for it. I would welcome information from anyone who has had this type of variant. 

  • I can only say to you that I had the same operation 2 years ago and whilst I didn’t have the BRAF my bowel cancer was stage 4 ( terminal) and the chemo is still keeping it in check and I am still living a reasonable life at 81 mobile and able to walk and use public transport. Ask the doctors the questions you want answering and what they think the prognosis is, I don’t believe consulting Google and like platforms or literature because we all present different symptoms and responses to chemo which the staff dealing with you can help you with advice and actions and hopefully put your mind at rest. Trust your medical and support staff and the best of luck with your operation and future care.

  • Hi Mabelle, I'm very sorry this is all happening. I have the Braf v600e mutation and we all say the first rule of Braf is don't google Braf- however you of course cannot help but do it to a certain extent. Do you have a Clinical nurse specialist yet? You've not mentioned what stage they think it is, in earlier stages sometimes surgery only is what happens- it sounds like they have not recommended chemo first which implies it's not too big to operate so that is good. In short there are options for Braf- specifically there is a set of drugs commonly called 'beacon' as that is what the clinical trial was called- they are usually given after your first line of chemo though it may change and they may be given with chemo at some stage. I will send you a friend request for here and then send you some other information but please go in to your surgery feeling positive that there are options and also please ask your nurse and oncologist lots o questions. I would say it's excellent they have found the mutation when they have as well- some people do not get this testing and do not initially know which may mean they are not treated in the optimum way. 

  • I too have the braf mutation. I found out last week. I'm stage 4 with liver and lung mets. Currently on folfox, 5th cycle next friday. Was supposed to have panitumumab but haven't been given that due to mutation. Meet with my oncologist in early February to find out options.