Metastatic Papillary with BRAF

I too have the Braf v600 mutation and tall cell. I had a TT a year ago, and RAI in May. I really do understand your fear- I fight it constantly, and when any new thing happens in my body, I automatically think metastases. I too have numerous small nodules on my lungs, which they have waited to see if they grow. I have RA(rheumatoid arthritus) as well. I am going in for my 6 month thyroid bed ultrasound, and lung catscan this Friday and am terrified. I have suddenly developed a cough, and like you have shoulder pain on one side, and discomfort where I believe a salivary gland is which radiates up to one ear. I just am so scared its my lungs now. Try and stay strong- it is important to live your life- otherwise you are depriving yourself of positive and supportive things. I just had 2 new grandchildren, and am thankful I can enjoy them now. I still work 4 days/week, and walk 3 miles almost every day. I remind myself a lot that each day is not guaranteed to anyone. But believe me, I am scared too!! I did join a Thyca in person support group, and although have only made a few meetings, it has been really helpful to be with others who although have been through a lot, are overall living and doing well! Would counseling with someone specialized maybe be of benefit to you?? Stay hopeful and strong, and try and enjoy TODAY.

I do not have any background on BRAF but I am so sorry to read about your situation! It sounds like you are doing the right thing by going for a second opinion just to be sure you are doing everything you can for yourself. One of the things that I find helpful when I need answers is to go to google scholar and search for the research on the subject. The research on the subject may give you a clearer picture on where to go for a second option… if a hospital is doing research on the subject you can try and go to one of the doctors listed in the research. Another suggestion is to look on the hospital website for support for cancer patients….. I saw it mentioned and it might help you keep things in perspective. I know Gildas club in White Plains (Gilda Radner) has a lot of good resources for people dealing with cancer to help heal their spirit while providing support. I haven’t check recently, but they used to have a nice website listing their programs….definitely worth checking. I called them to inquire for a friend going through cancer and they were very helpful. Good luck!

Thank you so much for replying. I am sorry you are going through it too. I am praying for good news for both of us. Hopefully we can stay in touch!

Thank you for the support and info. I live in Long Island, so White Plains may not be realistic for any consistency, but it could definitely be a start. I looked into support groups through Mt Sinai, but the information I was given did not include a thyroid cancer group.

Again, thanks for taking the time to respond and give some much needed support.

Hi @maryny23!
The diagnosis of cancer rots! It’s hard to know what to do next and if you are proactive enough, however, I think you are on the right path by looking for second opinions and looking for a support system to help navigate the low points of coping. Although White Plains might be too far to go to Gilda’s Club, I checked their website (https://cancersupportcommunitynyct.org/ ) and they seem to offer a lot of assistance that might be helpful . I have a theory that people and places that deal with cancer, know other people and places that deal with cancer too…they might know of some resources in your area! I hope you enjoy today.

Thank you so much for taking the time to do that! I can’t tell you how much I appreciate your help and just having a place to turn to where people understand what I am going through and my fears. I am going to look into the link tomorrow!