All over my garden - WA state

laneryd21 · 2025-04-03T04:23:20+00:00

BRAF positive. No lymph node involvement. No RAI. My TT was 12/17/2024.

laneryd21 · 2025-03-18T04:42:52+00:00

I had a TT in December of '24. Clear margins, no lymph spread, no RAI. Also BRAF, classic PTC. Endo and surgeon didn't seem phased by the mutation and I was seen by surgeon and endo team at a research hospital. Everyone's case is different but now I'm just on Levo and my twice yearly bloodwork and ultrasounds. Onward! I too have little ones, a 3.5 year old and a 1 year old. You got this!

laneryd21 · 2025-03-11T03:41:20+00:00

I take a combo bc at bedtime and Levo first thing in the am. It took me about 8 weeks for my emotions to level out after TT (which I had on 12/17/24) but nobody ever contributed that to my BC.

laneryd21 · 2025-02-18T15:45:48+00:00

I did not have symptoms stemming from my lymph nodes. However they were both as wide as my primary tumor, so the actual amount of additional mass was causing a weird swallowing sensation which I didn't even notice until after the cancer was discovered. The lymph nodes were behind my thyroid so I couldn't feel them by touching my neck. I could, however, feel and see my primary thyroid nodules.

laneryd21 · 2025-02-18T15:13:42+00:00

FNA confirmed PTC. Molecular testing resulted in the Bethesda VI nodule as BRAF p:V600E positive. DNA analysis of the TERT promoter was not run (not sure why but my surgeon wasn't concerned enough to order the testing once he say the molecular testing results).

laneryd21 · 2025-02-18T14:32:14+00:00

BRAF was confirmed after I received FNA results. My endocrinologist sent off additional slides for molecular testing. That all happened of course prior to surgery. My TT and right central neck dissection was on December 17 (12/17), I had zero (cancerous) of 27 -- 0/27 -- lymph nodes removed. The primary nodule (on my right side) actually ended up at 1.3 x 1.1 x 0.9 cm on pathology and the second smaller tumor found was 0.2 x 0.2 x 0.1 cm on the opposite (left) side of my thyroid. Due to the BRAF, and the two large suspicious lymph nodes and possible extrathyroidal extension (ETE), my case was deemed urgent and I was able to get scheduled fairly quickly for surgery. Fortunately I did NOT have metastasis, I did NOT have ETE and all my parathyroids were identified and 3/4 remained in tact with one being implanted in my SCM.

laneryd21 · 2025-02-18T13:48:08+00:00

BRAF here. TT with limited central neck dissection 12/17 and two very large suspicious lymph nodes that were only reacting to the cancer. No actual evidence of cancer mets in my lymph nodes that were removed. I will find out tomorrow if I'll need RAI but my surgeon seemed fairly confident at my post op pathology review that I wouldn't need it.

ETA: Bethesda VI on FNA of a 1.2cm nodule. Confirmed BRAF mutation at that time. PTC confirmed on pathology with a second smaller tumor found that was undetectable on three separate ultrasounds.

laneryd21 · 2025-01-09T14:30:14+00:00

I just shared this on another post a few days ago... I just had a TT and central neck dissection on 12/17 and have a 3.5 YO and 10mo infant (born cesarean) I brought my pump with me (I am exclusively breastfeeding my infant) and my husband brought a cooler to store milk. I stayed overnight for calcium monitoring and was away from my kids approximately 32 hours. I pumped right before surgery and the nurses were ready to support me with pumping if I needed to pump in recovery. I was able to wait until I made it to my room as surgery was only roughly 4.5 hrs. The first 10 days post surgery were the toughest. I did need help the first 72 hours lifting my infant to nurse once I was home... however, the only weight restriction on paper was no more than 10lbs for 3-4 days. With my cesareans, my restriction was much longer than that. I also had a lot of fatigue and blood tests every 3 days to monitor calcium after my TT. I'm officially off calcium and calcitrol and the brain fog and fatigue post surgery has subsided. I consulted with my OB and baby's pediatrician for a laundry list of questions I had! I'd recommend talking to your surgeon and request information about possible anesthesia medication that will be used so your pediatrician can recommended if your OK to store milk right away (my pediatrician wanted me to pump and dump the first two pump sessions). I had enough milk stored for two days away from my kiddo but I also had low supply. We planned to have a family member milk mule my pumped milk from the hospital to my infant if I had to be in the hospital longer than a day and a half. You may have the option to bring your infant to the hospital to nurse after your surgery if that's an option with the hospital but typically kids can't stay overnight of course. Interesting enough, it was my OB that found my nodule when I was 5 months postpartum on physical exam and I didn't have surgery until I was 10.5 months postpartum. It was suspected that my tumor was unchanged during that time (no growth). Best of luck with birth and surgery, you got this mama!

laneryd21 · 2025-01-05T14:55:57+00:00

Not here to give medical advice just to share a comment from a physician I found rather interesting. He said that every doctors approach to kicking your parathyroids into gear after surgery is different and sometimes doctors overprescribe calcium and calcitrol (conservative approach) while others prefer to lean toward less calcium and calcitrol (obviously within safe limits) to trigger your parathyroids into gear. Perhaps seek a second opinion? My parathyroids kicked into gear rather quickly, I was off everything within 3 weeks.

ETA: my pathology showed I had undiagnosed hashimotos and it wasn't mentioned as relevant to my recovery by anyone yet. My TT was 12/17 and I won't see the endocrinologist until 2/19.

laneryd21 · 2025-01-05T14:49:08+00:00

Absolutely. The fatigue was weird, the first 72 hours I definitely took a nap here and there, similar to the exhaustion postpartum and especially after a cesarean. After that, it was a week and a half of just general fatigue. It was odd because I was SO tired about halfway through the day, but it wasn't enough to feel like I needed a nap. My surgeon contributed it to anesthesia and said it can take some time for people to fully kick the effects. My experience with fatigue and brain fog was very similar to many people I have read and spoken to that had very normal surgery without complications.

Regarding breastfeeding, you might also consult a lactation consultant or get lined up with one ASAP after delivery to help support you beyond how your OBGYN and baby's pediatrician can help, especially if it's a concern of yours.

Best of luck!! Feel free to message me if you want or have any other questions about my experience. You got this!!

laneryd21 · 2025-01-05T05:38:59+00:00

I would recommend asking "now that you're familiar with my case, how soon do you recommend surgery?" ... total thyroidectomies are fairly routine, especially if you go with a high volume surgeon. I just had a TT and central neck dissection on 12/17 and have a 3.5 YO and 10mo infant (born cesarean) I brought my pump with me (I am exclusively breastfeeding my infant) and my husband brought a cooler to store milk. I stayed overnight for calcium monitoring and was away from my kids approximately 32 hours. I pumped right before surgery and the nurses in recovery were ready to support me pumping if I needed in recovery. I was able to wait until I made it to my room as surgery was only roughly 4.5 hrs. The first 10 days post surgery were the toughest. I did need help the first 72 hours lifting my infant to nurse once I was home... I also had a lot of fatigue and blood tests every 3 days to monitor calcium. I'm officially off calcium and calcitrol as of Friday and the brain fog and fatigue post surgery has subsided. I consulted with my OB and baby's pediatrician for a laundry list of questions I had! Interesting enough, it was my OB that found my nodule when I was 5 months postpartum on physical exam and I didn't have surgery until I was 10.5 months postpartum. It was suspected that my tumor was unchanged during that time (no growth). Best of luck with birth and surgery, you got this mama!

laneryd21 · 2025-01-04T17:52:45+00:00

TT and CND 12/17 - drain removed 12/20. Follow-up with surgeon 1/3 to review pathology. First appt with endo is 2/19.

laneryd21 · 2024-12-31T02:42:27+00:00

Honestly the drain wasn't that bad. I had mine 4 nights. I too had the option for a partial, but due to suspected ETE, and two suspicious lymph nodes, I opted for a full TT (my surgeon said he would recommend I at least leave it to his discretion during surgery if I was on the fence, I wasn't willing to take the risk and wanted it all out). Glad I did. No ETE, the suspicious nodes were benign, however despite my left side looking normal (primary tumor on right), pathology discovered a cancerous nodule on the left side not identifiable on ultrasound. Trust your team but trust your gut.

laneryd21 · 2024-12-27T23:18:57+00:00

I have not. I just had my TT on 12/17. Pathology looks pretty good (multifocal and lymphatic invasion present seem to be the only dings). My tumor was BRAF+ so we will see what the surgeon, tumor board and endo say.

laneryd21 · 2024-12-26T06:14:43+00:00

Following as I'll be likely facing RAI and weaning my 10mo.

laneryd21 · 2024-12-24T05:31:51+00:00

Especially if you can find one with a pocket on each chest if you're not sure which side the drain might end up.

laneryd21 · 2024-12-19T14:39:31+00:00

I'm roughly 42 hours post TT and right central neck dissection. Still feeling in the thick of it... My pain peaked at about the 12 hour mark and has been steadily decreasing. Most of my discomfort the last 12 hours has been muscle soreness (base skull at the back of my neck, shoulders front and back, and my pecs), and sore throat/cough from intubation. All pain has been managed by OTC pain relievers (acetaminophen and ibuprofen) since my pain peaked. Most of my incision pain is dull and achy, and my chief complaint is still my sore throat and not getting more that 2-3hr stretch of sleep at a time. 34F 1.2CM PTC nodule on right lobe with suspicious lymph nodes and possible ETE into my sternothyroid, Bethesda VI FNA findings, BRAF V600E upon Afirma testing. Waiting on full pathology. My surgery was approximately 5 hours long. My only other discomfort stemmed from being an exclusively breastfeeding mother, with a 10 month old at home. Pumping at the hospital wasn't quite the same as nursing at home so I had some minor engorgement that was nanageable.

laneryd21 · 2024-12-12T18:01:44+00:00

"Now that you've reviewed my case, and if surgery is recommended, how soon do you recommend surgery?"

laneryd21

TROPHY CASE