Papillary thyroid cancer with lymph node involvement

Posted by camdynsmom @camdynsmom, May 7 8:19pm

Hi! My 18 year old daughter was recently diagnosed with papillary thyroid cancer. She had a TT and a bilateral central neck dissection last week. Her pathology report came back today and 18 out of 38 lymph nodes were malignant. We see an endo on Thursday to discuss her next step in treatment and see her surgeon for a post-op on Monday. Just looking for some reassurance/info. I feel like 18/38 is a substantial amount of malignant lymph nodes.

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jasonffff | @jasonffff | Jun 12 8:32pm

Hi，do not worry about this.I am 30,I just found papillary thyroid carcinoma two month ago.I just finish a surgery.Doctor take half of my thyroid.This is not that knd of serious cancer.Through surgery and medicine can totally control

azitaanita1 | @azitaanita1 | Jul 7 12:13am

In reply to @sweettoothd "I have tall cell papillary cancer, which by nature is more aggressive, and I am older..." + (show)

Why do you get chest scan?

sweettoothd | @sweettoothd | Jul 7 5:19am

In reply to @azitaanita1 "Why do you get chest scan?" + (show)

I have numerous nodules in my lungs- they are not sure whether that is thyroid cancer metastasized or not- so they watch them and see if they grow. So far, they haven't.

azitaanita1 | @azitaanita1 | Jul 7 12:46pm

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

w3 | @w3bjamn | Jul 17 5:12pm

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!!

koh | @koh | Jul 18 6:53am

In reply to @w3bjamn "Hello there, I was just told that I have "Lymph nodes with metastatic papillary thyroid carcinoma."..." + (show)

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!

gillsden | @gillsden | Jul 18 8:56am

In reply to @w3bjamn "Hello there, I was just told that I have "Lymph nodes with metastatic papillary thyroid carcinoma."..." + (show)

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!

w3 | @w3bjamn | Jul 18 8:45pm

In reply to @gillsden "Hello - While I do not know the full extent of my cancer until after my..." + (show)

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.)

w3 | @w3bjamn | Jul 18 8:49pm

In reply to @koh "Wow, that’s a terrible way to get this type of news! Maybe you should call your..." + (show)

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!

catherinec | @catherinec | Jul 19 2:14pm

In reply to @w3bjamn "Hello there, I was just told that I have "Lymph nodes with metastatic papillary thyroid carcinoma."..." + (show)

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

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