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BRAF and lymph node removal

CherylMike
Posts: 118
Joined: Oct 2009

I had a TT two weeks ago (I have papillary cancer). My doctor told me he was having a BRAF test done. He said that if it comes back positive that it is a more aggressive type of papillary cancer. This, combined with my age (49, may mean that it has spread to my lymph nodes. He then spoke about a neck dissection. Has anyone experienced this? Do they remove the lymph nodes in the neck if the BRAF test is positive or is there a test that can be performed to see if there is cancer in the lymph nodes?

sunnyaz
Posts: 582
Joined: Oct 2010

I had papillary Thyroid cancer. My TT was in November 2009, a little less than a year ago. I was 42 years old. In May 2010 it was discovered that I had metastasis to the Lymph nodes. In June I had a dissection of the neck with thirty four nodes removed and they tested for B-RAF at that point. I was positive. Only three of the thirty four were actually cancer. B-RAF is a mutation gene that can make the cancer more aggressive and harder to treat. I had my RAI treatment on September 1st. With a positive B-RAF mutation, my doctor was not sure if I would uptake the Radioactive Iodine. I was fortunate to uptake with the scan dose so they gave me the treatment dose the next week. B-RAF is not a death sentence, it just means that you must take any and all precautions and use aggressive treatment. Have regular scans for several years after you are cancer free to make sure it has not come back. If it returns, it should be removed immediately. Hang in there, you are not alone. Feel free to email me through the site or post if you have any other questions.
Sunny

lynn2318
Posts: 41
Joined: Jan 2010

Do you know if you can have this test 2 years post surgery and 1 year post RAI treatment? I find it interesting that my endocrinologist has never mentioned this gene test to me. That is so frustrating when doctors don't do all they can do to provide the information the patient needs. Thanks for any information. I will also google and read about it but I always like to hear from people who have been through it. Thanks again.

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

I did not have it done at the time I was diagnosed either but my docs at Mayo have mentioned that if the pathology lab still has a tissue block from my tumor that they can test that. I haven't had it done yet though. It can't be done through blood tests - has to be tumor tissue as i understand it.

nasher
Posts: 507
Joined: Apr 2010

i did a quick serch of the braf test and yes they did that with me as well they just said they were doign "another test" at the time I really wasnt paying attention much but looking back and such its nice to know about

Mutations in the BRAF oncogene are common in a variety of cancers. BRAF mutations are found in 25-80%of melanomas, 30-80% of papillary thyroid cancer, 12-18% of colorectal cancers, and 8% of solid tumors overall.The BRAF Test offers critical information that guides oncologists in decisions regarding specific therapeuticoptions for patients.

Suggested for use in colorectal cancer patients who have tested negative for KRAS mutations

The BRAF Test is a highly sensitive and specific mutation analysis that guides oncologists as they seek to determine whether a patient will respond to drugs that target the Epidermal Growth Factor Receptor (EGFR). Recent studies suggest that patients who have BRAF mutations do not benefit from anti-EGFR monoclonal antibody therapy.

bioTheranostics BRAF test

Identifies the V600E (1799T>A) mutation
Accounts for more than 90% of all known and clinically relevant mutations
In combination with KRAS mutation testing, can detect up to 50% of patients who will be non-responsive to the anti-EGFR therapies, cetuximab and panitumumab

mpatrix
Posts: 8
Joined: Oct 2010

Now how do they test for this B-RAF? is it just a simple blood test?
Reason why i ask is my thyroid cancer has spread to my lymph nodes for the second time i'm getting ready to have another neck disection soon...this time there will be two surgeons in the operating room...
I just wander is this a test i should sugest before surgery or what ?

sunnyaz
Posts: 582
Joined: Oct 2010

They tested my Lymph nodes after my dissection. I don't know if they can use blood. The B-RAF is something newly discovered. Your doctor may not know about it. Probably better ask if you have had a second metastasis.

mpatrix
Posts: 8
Joined: Oct 2010

Thanks....
I'm so glad i found this site due to listening to all of you it's helped me get new questions to ask... Thank you everyone

CherylMike
Posts: 118
Joined: Oct 2009

My surgeon called this morning to let me know that my B-RAF test came back positive. He said that I would need to be monitered carefully (3 visits to him per year) by him and my endo. He said that this test being positive means I have a greater chance for spread to my lymph nodes. Does anyone know what the percentages are for spread? I was dealing with this diagnosis and treatment fairly well (considering my husband dies 1 year ago from head and neck cancer and I am in the process of losing my home to the bank) but this news just put me over the edge. Now I am worried. The surgeon said the neck dissection is not disfiguring (but I have seen neck dissections when my husband was in the hospital and that looked scary). Has anyone been through this? Any words of wisdom would be greatly appreciated at this point. Thanks everyone.

sunnyaz
Posts: 582
Joined: Oct 2010

I am positive for B-RAF and I had spread to the Lymph nodes. Had my dissection in June. You may remember this from one of my previous posts. I should have had RAI after my first surgery (TT) but my Endocrinologist did not want me to do it because I was first stage and he had not yet tested for the B-RAF gene. In my second surgery the surgeon missed the largest node and now it has spread again, so I am going back into surgery probably before the end of the year.

They will need to keep a close eye on you for many years. I can't say that I am totally disfigured. I do have a scar about six inches long from the base of my right ear to the opposite side of my neck. I have a lot of nerve damage. I was lucky that the "smile" nerve wasn't severed. I still have a normal smile.

I don't really have any words of wisdom but I can tell you that it's better to be cancer free and have a scar than to have cancer. I hear from others that eventually you will wear it as a badge of courage. Hang in there and keep your chin up!
SunnyAZ

I lost my home this year. First I lost my business with the fall of the economy and had to go back to school. Just before graduation I found out I had Thyroid cancer. It's been a very bad year. I live in Arizona where the economy was hit pretty hard. We are surviving however. We rented a beautiful new home and are moving forward with our lives. Good things can come from great trials and disappointments. I am a firm believer in this. Although I lost so much, I gained more and I am a better, stronger and happier person even with cancer.

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