Braf in genes in cancer cells

guen44
guen44 Member Posts: 3 Member
edited December 2023 in Thyroid Cancer #1

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. 

Comments

  • cassdeal
    cassdeal Member Posts: 1 *

    I hope you are doing well as it's been awhile since you posted this. I have been diagnosed with PTC but no clue what stage they say it's spread to my lymph nodes but again won't say much. The biopsies they ordered showed that I have the BRAF mutation to which they haven't even told me I just read on my report...It's scary and it angers me to be left in the dark about my own body, my own cancer.... I've tried searching about the mutation and that didn't help my anxiety unfortunately. I am scheduled to have a total thyriodectomy and all my right lymph nodes removed as well next month Aug 14th. I am only 32 and have 3 kids 14, 13, and 11. All of this is hard to take in and I truly hope and pray that I can get thru this and that you have as well...


    Cass

  • Miles' mom
    Miles' mom Member Posts: 33 Member

    Hey there. Please find a team of doctors that do not leave you in the dark and are invested in you. Fighting for you. ESSENTIAL.

    Everything you said sounds like my story 5 years ago. The braf means a cancer that already tends to jump around, is even more likely to do so. You will likely go through RAI treatment, which is YUK but not terrible. In fact if you know Jesus, have amazing doctors and a support network (family or even a few friends that are in 100%), this is just a major inconvenience. Please don't get me wrong. It is challenging mentally, emotionally and physically!!.

    Me- 4 surgeries, 3 jumps, RAI, so many pin pricks and scans PET MRI...

    It take a toll. I am 2 years now with clean scans. You will make it through also. Step by step, one foot in front of the other. I just plowed ahead and did what needed to be done. What else can you do??

    Stay strong and stop googleing ;)

    I will pray for you. (private msg me anytime).

  • guen44
    guen44 Member Posts: 3 Member

    cass

    sorry you have to deal with this too, i did research and joined groups on facebook to understand my cancer better..they will only find the stage during surgery and its base on your age and where it has spread.. i would suggest you changed your diet to whole food, no process food, no refined flours or sugars. read all labels. hard in the beginning but its worth doing since you have kids, i have 2 adult sons and still i dont want to leave them like this. i had 3 surgeries total. so far in remission for 16 months.. i hope it continues to be that way, ask to get your cancer be tested if it will respond to RAI mine didnt.

  • Miles' mom
    Miles' mom Member Posts: 33 Member

    I would, highly, recommend you stop calling it "my cancer".

    Why claim it??

    Could be the ticket!

  • JaneWonderWoman
    JaneWonderWoman Member Posts: 9 Member

    If you haven't done so already, get yourself to a real Cancer Center that has dealt with BRAF before. Ask them how many they have cared for. What was the outcome? Take your medical records with you and get a second opinion. Don't just stop there. Fight bad genetics. Buy the book Prescription for Nutritional Healing by Phyllis A. Balch, CNC from Amazon, and look up cancer remedies and supplements. NEVER eat out at fast food. Buy a juicer and use it. Buy as many of the "Essential list" of supplements in the book as you can afford. Change your diet and hydrate with nine 8-ounce glasses of spring water a day. Never use tap water. You are in a war for real. You need all the weapons you can get and you better be willing to use them. Fear is the thief of dreams.