1. < Thyroid Cancer

Papillary thyroid cancer with lymph node involvement

Posted by camdynsmom @camdynsmom, May 7, 2024

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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hrscott01 | @hrscott01 | 3 days ago

Hi! I am 18, though I was diagnosed when I was 16. Post surgery, it came back that 20/49 lymph nodes were cancerous as well as microfoci across my entire thyroid. I had RAI and am now under TSH suppression. I am still seen every 6 months and am considered "indeterminate" and "under surveillance", but so far nothing new has been caught! I hope this gives some hope that your daughter as well can find some peace. I have the RET-fusion gene as well as Extra-thyroidal extension, but luckily my RAI was effective and my scans have been mostly clear since then.

Do you have any updates on your daughter?

REPLY
w3 | @w3bjamn | Aug 2, 2024
In reply to @colleenyoung "@w3bjamn, I'm glad things are moving. Having 4 appointments in 6 days is a whirlwind, but..." + (show)
@colleenyoung

@w3bjamn, I'm glad things are moving. Having 4 appointments in 6 days is a whirlwind, but you shouldn't feel rushed. Make sure you ask questions. And if the responses raise more questions, keep asking until you have clarity of your options to make the choices that are best for you.

Here's a list of additional discussions about thyroid cancer and neck dissection: https://connect.mayoclinic.org/group/thyroid-cancer/?search=neck#discussion-listview

The appointments I assume are to get clarity of the diagnosis and next steps. Have you considered getting a second opinion?

Jump to this post

Unfortunately I do feel rushed. Is it normal to have so many appointments so quickly?
I meeting my new ENT today. My mammo came back abnormal, and visual LEFT lymph node present. (Everything has been happening on Right. And radiologist requested a 2nd one done. My current ENT said no, because I was having a CT done in a few days.

I did my CT yesterday, no axillary lymph nodes, anywhere present. I have issues breathing, and was told it would show up on CT, and nothing..
I'm feeling like I either got a bad scan, bad read, everything "miraculously" went away (axillary wise).

When going through past paperwork, I noticed that in the beginning, no thyroid nodules were present. A month in half later, left side had a Ti-Rad 3 and right side had Ti-Rad5. Is it normal for nodules to grow that fast? I'm not assuming they are cancerous, just growth in general.
I do want a 2nd opinion. I picked up all my scans, imaging and plan getting answers. I'm just not satisfied with the ones I've been given.
Thoughts?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 2, 2024
In reply to @w3bjamn "Hi! So here's my update - I got ahold of my current ENT, who told me..." + (show)
@w3bjamn

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

Jump to this post

@w3bjamn, I'm glad things are moving. Having 4 appointments in 6 days is a whirlwind, but you shouldn't feel rushed. Make sure you ask questions. And if the responses raise more questions, keep asking until you have clarity of your options to make the choices that are best for you.

Here's a list of additional discussions about thyroid cancer and neck dissection: https://connect.mayoclinic.org/group/thyroid-cancer/?search=neck#discussion-listview

The appointments I assume are to get clarity of the diagnosis and next steps. Have you considered getting a second opinion?

REPLY
1 reply
sweettoothd | @sweettoothd | Jul 26, 2024

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....

REPLY
lilyann | @lilyann | Jul 26, 2024
In reply to @sweettoothd "Curious what type of aggressive papillary cancer do you have? Also, why did they give you..." + (show)
@sweettoothd

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

Jump to this post

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

REPLY
sweettoothd | @sweettoothd | Jul 26, 2024
In reply to @lilyann "hi sweettoothd, lilyann here. i too, have the aggressive papillary cancer. my surgeries were in jan..." + (show)
@lilyann

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.

Jump to this post

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

REPLY
1 reply
lilyann | @lilyann | Jul 26, 2024
In reply to @lilyann "hi sweettoothd, lilyann here. i too, have the aggressive papillary cancer. my surgeries were in jan..." + (show)
@lilyann

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.

Jump to this post

lilyann here, sorry, year was 2023.

REPLY
lilyann | @lilyann | Jul 26, 2024
In reply to @sweettoothd "I think your thought to get a second opinion at Mayo is a very smart one...." + (show)
@sweettoothd

I think your thought to get a second opinion at Mayo is a very smart one. My initial ENT (that s who did my surgeries) told me all was fine. I eventually transferred care to Penn, and have had more intervention since , and now understand my particular papillary cancer is more aggressive and I need to be watched very carefully. I wish you the best!

Jump to this post

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.

REPLY
2 replies
w3 | @w3bjamn | Jul 25, 2024
In reply to @catherinec "My guess is that he mentioned the situation to someone and was reminded that cancer in..." + (show)
@catherinec

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

Jump to this post

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

REPLY
catherinec | @catherinec | Jul 25, 2024
In reply to @w3bjamn "Hi! So here's my update - I got ahold of my current ENT, who told me..." + (show)
@w3bjamn

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

Jump to this post

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

REPLY
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