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Papillary thyroid cancer with lymph node involvement
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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@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?
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2 ReactionsUnfortunately 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?
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?
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1 ReactionHi @hrscott01, I'm tagging @camdynsmom so that she sees your question about how her daughter is doing.
@hrscott01, you may also wish to talk part in the forum for adolescents and young adults with cancer here:
- Adolescent & Young Adult (AYA) Cancer Support Group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/
The group also meets monthly on Zoom:
- Young Adult Cancer Support Group Meeting: Y.A. Me Too https://connect.mayoclinic.org/event/aya-adolescents-and-young-adults-support-group-meeting-y-a-me-too-1-84eda13a/
Great news to hear that your scans have been mostly clear. Did you have to miss school during treatment? How are you doing with TSH suppression treatment?
Thank you so much!
Yes, I missed about a month of school to recover from my surgery, and radiation made me miss a few more weeks as I went through hormone withdrawal, which effected me significantly. I also had to go to physical therapy for about a year as I still have very bad nerve damage in my neck and shoulder from the surgery. The hormone treatment is a little rough but I am used to it by now; I have my appointment next week, and I'm hoping things will stay clear. Last I checked, they are keeping my TSH very low to be safe.
I'm so sorry to hear she and your family are going through this. The C word is scary. I just went for a second opinion for reassurance. RAI is the gold standard of care to stop it from returning or even curing the PTC. It is emotionally scary as well. I didn't want to do RAI (for a second time). The first RAI didn't get all of mine (possibly due to a mutation). She is young so I understand her prognosis to be better. I'm 57. I will keep her and your family in prayer. My doctor called it an inconvenience. It is hard and there will be tough days, but know that things get better.
Did you have a mutation or variant? I have HRAS mutation with foliicular features and copy number alterations. I honestly don't know what that really means but apparently it can change secondary treatments if RAI doesn't work the second time. I went to Barnes/WashU for 2nd opinion and they are running a TEMPUS in case I get Recurrent RAI Refractory Disease. It takes 6-8 weeks for results so I will done with RAI and won't have to wait if we need to do other targeted treatments.
Protocols are so different from doctor to doctor. I was told stage 3 means the cancer has progressed past the neck. So I am at a 2. The liklihood of my spreading to the other side of my neck is pretty high but was told RAI lessens the chance. I have had a TT, center neck disection and a modified radical right neck disection. I'm doing okay emotionally now, but a couple weeks ago I was frustrated and felt defeated. Hang in there. I'm keeping everyone in my prayers.
The waiting is the worst. I'm struggling with that as well. If you can get a second opinion at at MD Anderson, Cleveland, Barnes, etc. They are usually very quick to get into. At least that has been my experience.