Papillary thyroid cancer with lymph node involvement

Same as me- tall cell with brafv600e mutation. Scares me to hear what they told you- my doctors have never suggested that. Glad to hear you are stable. My maternal grandmother died of thyroid cancer- don t know what type ,and my youngest son (of 4 kids) 28 years old now has to get a biopsy after an ultrasound on his thyroid for a nodule. I am SO worried....

lilyann here, sweettoothd, tall cell, braft v600, well, being aggressive i guess is why they gave me that. its just been an awful rollercoaster ride, just the C word was enough to put us into a tail spin and all that went on in between. there is another letter that goes after the 600, i'll go back into my chart and see. take care

Curious what type of aggressive papillary cancer do you have? Also, why did they give you a survival estimate??? Thanks for your response!

lilyann here, sorry, year was 2023.

hi sweettoothd, lilyann here. i too, have the aggressive papillary cancer. my surgeries were in jan and march of 2022. at the age of 80, they said they do not look at age. i go to the oncologist every month. strange thing though, i am the only thyroid cancer patient of hers. so here i am 81 1/2, given a 6-10 month survival rate. so best wishes to you.

Thank you :):) I'll have to give an update when I get more answers. Cross your fingers for a good (2nd) mammogram and CT. #stayingpositive

My guess is that he mentioned the situation to someone and was reminded that cancer in any form needs to be treated by a specialist in that area. Period. Don't let it freak you out that the referrals were stat. That just means you need to be a priority and not someone they wait and put on the schedule when it's convenient. Stat is a priority, but it's not the emergency situation TV shows seem to make it out to be... I'm thrilled he is taking you seriously though!!! 4 different appointments in 6 days is not that uncommon once everyone finally starts to work as a team. You are fortunate they seem to be putting together a good one. Cathy

Hi! So here's my update - I got ahold of my current ENT, who told me that I will have to have 50-60 lymph nodes removed on the right side of my neck. He referred me to a specialist at a top specialist to have a full Thyroidectomy. I reminded him of my enlarged axillary lymph nodes, which he them ordered a mammogram, chest CT and then a referral to a General surgeon for consultation to results of CT. Everything he sent out has been STAT.
So question for everyone is, when you get diagnosed with Papillary thyroid cancer, do they move "fast." It went from hearing crickets, to now we need to move faster.. asap asap.
Also, when someone has had some lymph nodes removed on their neck, I mean 50-60 sounds like a ton!!! Is that, uh more than usual?
Please, be blunt, don't hold back.
I'm having 4 appointments in 6 days, 3 different doctors and one CT. While I know this isn't the Anaplastic cancer, it still feels "rushed"
- Ash

Hi @w3bjamn, any update? Were you able to get an appointment with an oncologist? Are you going to a cancer treatment center?

Hi Cathy! Thank you so much for your encouragement 🙂 I rewrote a more detailed post here. I got a call today I am soooo not happy. Looks like he's pawning me off, and was completely stumped when I asked him about a different symptom. I'll be going for a more aggressive approach