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Braf in genes in cancer cells

guen44
guen44 Member Posts: 2

i had a total thyroidectomy may 2020, with 50plus nodules removed, i complained to my endo that i feel something rough behind my throat when swallowing he just brished it iff and told me thats not thenproper way to swallow, had RA131 after 3 months from surgery in hope to dissolve 2 nodules, i was so confused as to why this happen? as my surgeon confidently told me i will not see him again, the endo suggest that the surgeon possibly didnt see the nodules then cause it could be that its smaller, after the radiation tsh level was fine, another 3 months in, my right cheek started to swell, didnt panic and hope itll go away, hard mass then left cheek swell as well, i seen my endo and he told me its a side effect from the radiation, that im not producing enough saliva, they had me use pilocarpine to help woth the swelling while this is happening the endo decided to do an ultrasound and found very angry nodules the left side of my neck, he then did biopsy and sure enough it has cancer, contacted the surgeon and scheduled for another surgery, along with this he ordered a Ct scan, found out that theres more, far behind my throat, all these new nodes didnt showed during my RA131 scan, so theyre all new, i was referred to another surgeon, head and neck surgeon but also an oncologist, he then ordered a Pet scan to make sure where all the nodules are, so far theyre still around my neck, the clump of nodules on my left side of neck is 1/3 size of my heart,was referred again to see a specialist an oncologiston for thyroid, he explained that the remission is fast cause i have a BRAF in my genes, none of the first set of doctors have ever told me abt,possibly cause theyre not cancer doctors, but i did asked my endo then if i should see an oncologist, he told me thats not needed, but here we are now just a yr from being diagnosed with thyroid cancer i have remission, not sure what stage is my cancer, i have not asked that, anyway, the oncologist told me that the braf cell is like its stepping on a gas pedal, there is no way to stop it, the only way to deal with it is to slow it down, he told me after my surgery, which iam waiting to be scheduled, where the surgeon will have to make an incission from left ear to the right as the nodes are spread some on the middle lots on the left and some on the right, because the nodes on the irght side is far back my throat, he couldnt do a robotic surgery, he just wanted to do one surgery but will have to cur my right jaw to reach that node at the back of the throat, will put the jaws back with screws and was told my recovery would be longer compared to the first surgery, iam scared as im alao shocked at how fast this came back, in just 3 months after surgery 2 nodes, three more got lots maybe 10-14 nodes, i have 2 boys ages 23 and 22, i hate the thought of hurting them when i die but i have no control of that when that happens, i asked my doctor what is my life expectancy? he said that question is a tough question to ask and tough question to answer, he gave me hope instead and told me, he has a patient under a trial drug for 9yrs, since my cancer didnt respond to the radiation, and i wont have a chemo, trial drugs and immuno theraphy is the inly way to go, he told me, the cancer will not stop, the drug will just slow it down, to buy me some time, and who knows in 2-5yrs there could be a new drug to help end cancer. I hope it happens, id be 45 end of this month, im not aftaid to die but im not ready, i guess i dont want to die, i love my husband so much and i know how death hurts the ones we leave behind

 

If anyone here has the same condition with braf in cells please! i need to talk to you! Im angry im hurt, was told mine was genetic, despite my dad being dead, i get upset now, he was not a good father nor a husband to my mom, and the inly inheritance he gave me is this a decease. I feel lost and wish i can have my surgery done in the next days but still waiting.