Papillary thyroid cancer with lymph node involvement

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

I received the same diagnosis after my complete thyroidectomy, partial parathyroidectomy and neck dissection. Like you, I panicked. The surgeon referred me back to my endocrinologist. My primary doctor referred me to an oncologist. Interestingly, I felt MUCH BETTER after meeting with the oncologist, as well as with the endocrinologist. I was told "metastatic" means this some of the cells made up of this specific type of cancer (papillary thyroid caner cells) have spread from original site/organ (my thyroid gland) to another place within my body. The place it's spread to is several (but not all) of the lymph nodes close to the thyroid gland they removed during the surgery. My physicians (these specialists) have each assured me papillary thyroid cancer is very slow growing and does not spread quickly to other parts of the body. I was skeptical and pretty certain it must have traveled through those lymph nodes somewhere else in my body. I was wrong! The oncologist did lots of bloodwork and ordered a PET scan; all of which came back just fine. In fact, they don't even feel it's necessary to see me more often than every 6 months or so. I certainly understand the feeling of terror you must be experiencing and am very sorry you are having to endure this time of waiting. Just know, the odds are WITH you when it comes to this type of cancer. I hope
this helps.
Cathy

I think I might go ahead and do that, and contact my ENT, whom I've been working with. I can't take the waiting. I also have no appointment in sight in speaking with an Endocrinologist, ugh. I've been doing more reading, i like the suggestion of a PET scan, thank you!

Oh boy, I am so sorry. I hope you get news that is easily manageable. When do you have your Thyroidectomy? I'm nervous of that procedure being done, even though I just had a lymph node/ tonsils (done at same time.)

Hello - While I do not know the full extent of my cancer until after my thyroidectomy I do understand feeling like that hearin the news I felt like I was watching a movie and someone else was being told. I am sorry that you are left hanging and wish you the very best!

Wow, that’s a terrible way to get this type of news! Maybe you should call your dr and ask for an appt or telehealth appt ASAP to follow up on the initial phone call where they told you that you have cancer in lymph nodes. You might be fortunate and have found it before it spread to other locations, ( and it’s just in lymph nodes), however I tend to think they might have you have a PET scan to get more information on possible spread. Good luck!

Hello there, I was just told that I have "Lymph nodes with metastatic papillary thyroid carcinoma." It was over the phone and to be honest, once I heard cancer, I didn't silenced every word after. Per the paperwork - that is the main part of the pathology report said. Unfortunately I haven't been able to talk to my doctor since. Hopefully this week/next week. It's been a absolute torture to not read into websites or panic. Can anyone, seriously tell me in plain English, what the heck does that mean. My lymph nodes have cancer? Is it distant? Is it possible to my lungs? Seriously give it to me straight. I don't do well with limbo. Please please please, give me something. Yes, I am aware I need more tests, yes I am aware I need to talk to Dr. But until then, help!!

I am glad it hasn’t grown. Thank you for your reply.