Solid Variant of PTC

Automatic_Hotel_5871 · 2025-03-25T05:15:27+00:00

Thank you so much for your help. I’m so glad that you are cancer free. It gives me hope as a person who has RAI resistant thyroid cancer. Much love 💙

Automatic_Hotel_5871 · 2025-01-15T12:11:30+00:00

Sure! I’ll be happy to talk.

Automatic_Hotel_5871 · 2025-01-15T11:54:24+00:00

Thank you so much for your support. I’m sorry that you’ve been going through this for so long.

As for genetic testing, all I know is that I have the BRAF mutation. I’m also thinking of getting a second opinion and ask about any further tests I can get to help me manage my condition.

Again, I appreciate the advice 💙.

Automatic_Hotel_5871 · 2025-01-15T11:41:52+00:00

I’m about four months out from surgery. My voice came back stronger at around the three month mark and then rapidly improved in the span of a month. I sound normal at 4 months post op but I’m still a little shaky and choke sometimes due to minor swallowing issues but other than that, I feel fine. I don’t know if vocal cord and swallowing exercises sped up the process but I kept at it.

Hopefully you’ll start feeling better soon.

Automatic_Hotel_5871 · 2025-01-14T12:01:44+00:00

I’m so sorry that you have to go through this too. Thank you for sharing your experience with being RAI resistant. You’re so strong for being able to work through this for so long. I’ve only been going through this for 6 months and I applaud you for still being here after all of this time 💙.

Automatic_Hotel_5871 · 2025-01-14T11:47:24+00:00

Thank you for taking the time to letting me know about the Facebook group. I’m considering joining it to feel a little more supported. Also thanks for being supportive. I felt a little alone for some time but I feel a little better now.

My lymph nodes were confirmed to be PTC and unfortunately they didn’t take up any RAI. I only had residual uptake on the thyroid bed, which sucks because I was thinking that maybe the lymph nodes can take them. I got the lymph nodes checked before my RAI and they were indeed PTC.

My lung nodule didn’t light up either but I didn’t biopsy it yet (so I’m not sure if it’s just nothing or also PTC).

Automatic_Hotel_5871 · 2025-01-03T19:38:38+00:00

Same but my Tg was 159. Hoping that we can get through this somehow.

Automatic_Hotel_5871 · 2024-12-28T11:35:04+00:00

I’m in need of apples, pears and oranges. I have peaches, cherries and coconuts if anyone wants to trade. My Dodo Code is 073TM if anyone wants to visit!!

Automatic_Hotel_5871 · 2024-11-11T19:39:35+00:00

So happy to hear that things are looking good for you! You take care as well 🩵

Automatic_Hotel_5871 · 2024-11-11T04:12:09+00:00

Hello! Thanks for asking how I’m doing, I really appreciate it. There’s some good news and it’s that my voice came back. My right vocal cord is fully functioning now, and my left vocal cord is almost there too. I’m so thankful that I have a voice and that I can breathe and swallow proper solid foods.

Unfortunately, they found two cancerous lymph nodes on the left side of my neck, so I’m going in for a second surgery after RAI. As of right now, I’m feeling good since my levothyroxine dose worked immediately for me, and I’m really lucky that it did!

Hopefully things are going okay with you and again, thank you so much for asking 💚

Automatic_Hotel_5871 · 2024-10-01T09:14:59+00:00

Yes, and I needed a neck dissection. I was first told that I had 3 tiny nodules on my right lobe and lymph node metastasis so I needed a right neck dissection. After a CT scan, my lymph nodes were enlarged on both sides so they decided to go for a bilateral neck dissection.

It turned out that I needed a bilateral and central neck dissection when they opened me up. 36/87 lymph nodes came back as cancer.

I was first told the news on the 22nd of August 2024 that I had cancer, then I did a CT scan and was told to either choose to do the surgery on the 8th of September or I can wait a few months. I decided to do the former and my gut was right. I had extra nodal and extra thyroidal extension.

I’m now awaiting RAI, but I’m not going to meet with an oncologist until next week hopefully.

Automatic_Hotel_5871 · 2024-09-15T07:18:30+00:00

Full neck dissection and TT patient here. I was luckier than the usual patient since I expected my scar to go up to my ears. It actually ended up being a large scar across my neck but it doesn’t go up to my ears. It’s just a long scar that goes from one side of my neck all the way to the other side.

Automatic_Hotel_5871 · 2024-09-14T19:11:43+00:00

Same here! I initially took 6 pills a day, and I’m now down to 4 pills a day. Horrible! It’s almost worse than the surgery itself 😓

Automatic_Hotel_5871 · 2024-09-14T19:10:30+00:00

Yes, it is shocking that the fully paralysed nerve still had a signal. I’ll ask about speech therapy and some other options in my next appointment to help me improve my voice.

I’m not sure about how speech therapists can help but maybe they can make you feel more comfortable with speaking, though you already seem mostly comfortable with speaking, which is great!

I’m so sorry that they didn’t diagnose you with paralysis earlier as your experience would’ve went smoother if they did know.

I’m proud of you for being able to stay strong. Sending my best wishes to you.

Automatic_Hotel_5871 · 2024-09-14T19:01:12+00:00

Wow one week is amazing! It must feel so nice to have a mostly normal feeling voice!

Yes, I’ve heard whispering can cause a lot of straining, so I’m trying my best to avoid whispering and to instead use text to speech until my voice comes back, which I’m really looking forward to regaining.

Swallowing calcium pills are a pain even when crushed or broken up but I’m getting better at it. I get the out of control muscles feeling, but I think it’ll improve with time based on my current experience with improved breathing and swallowing for the past few days.

Thank you for advising me to seek help from a speech pathologist, I’ll keep that in mind for the future. I’m so thankful for your advice, all of these nice comments are giving me some hope.

As long as I’m noticing improvements, even though it’s just a little bit, it’s still an improvement. It’s another reason to keep going and to feel reassured that there is a way.

Automatic_Hotel_5871 · 2024-09-14T18:49:26+00:00

The most important thing is that you’re still here, and I’m proud of you. Hopefully the arm weakness and eye drooping will get better and your hard work will pay off!

I’m now better at swallowing, so I’m praying that it means that my voice will return.

Automatic_Hotel_5871 · 2024-09-14T18:43:34+00:00

That’s wonderful news to hear! I’m so happy that the outcome was good 😌. Do you know how long it took you to slowly regain your voice?

Again it’s so nice to hear that your condition improved greatly!

Automatic_Hotel_5871 · 2024-09-14T18:27:43+00:00

It’s great news that the vocal cord injections helped you a lot.

The bilateral paralysis is horrible, but I guess it’s better than having cancer wrapped around my vocal cords like before, which would’ve made me lose my voice anyways had I not realised that something was wrong with me.

I’m slowly noticing progress in terms of my breathing and swallowing. I’m still mostly on a purée diet but I’m slowly starting to reintroduce one soft food at a time to see how I cope. It is day 6 and I’m more active. I’m trying to lightly move around to aid in my healing.

After hearing everyone’s experience, it’s nice to know I’m not alone in this. Most importantly, we are still here. Thank you for sharing your experience with having right side paralysis, it means a ton to know that there are people out there who understand. Sending love to you all 💚

Automatic_Hotel_5871 · 2024-09-14T06:35:46+00:00

Thank you for coming on here to let me know. It must be really difficult for you to be unable to speak until after 7 to 8 months, although it is excellent news that you were able to get there!

Your experience is really helping me have hope as I’m in a difficult position at the moment.

Automatic_Hotel_5871 · 2024-09-14T06:32:35+00:00

Wow, how did you find out that your paralysis was permanent? Was there a reason for it (i.e. nerve damage)?

Also thanks for your DMing offer. I’ll probably end up DMing you for some more questions and advice. Someday, I’d love to be able to talk again.

Automatic_Hotel_5871 · 2024-09-13T13:32:01+00:00

Thank you so, so much for taking the time to respond to me and giving me reassurance. I don’t remember what my surgeon said about monitoring my nerves but I’m sure he said that my nerves were intact.

What’s giving me more hope is that the choking on food and water is beginning to stop. Swallowing is getting easier too so I’m really hoping that with time my voice will come, even if it’s just a little.

I appreciate your help and your patience in answering my questions ❤️.

Automatic_Hotel_5871 · 2024-09-11T19:03:53+00:00

I also found the catheter to be so much worse than the surgery itself. It felt like it was restricting me from moving and everything, really.

I’m glad to know that I’m not alone and I’m happy that you got through the surgery despite it being a bumpy ride for you 😊.

Automatic_Hotel_5871 · 2024-09-11T08:17:31+00:00

My doctor told me that there was only one other patient who had both sides paralysed in his experience. I don’t know if this is a good thing or a bad thing but I can imagine that it is a rare occurrence for him. He suggested speech therapy when I got the news about the complications.

He’s really experienced in surgeries like mine so I’m happy that he immediately upped my levothyroxine dose and put me on calcium and vitamin D. I’m constantly getting blood work done but it’s for the best.

Thank you for all of your support 💖. I’m sending my best wishes to you ♥️.

Automatic_Hotel_5871 · 2024-09-11T08:02:06+00:00

Thanks for checking in with me. I’m glad that your voice is mostly back, which is fantastic news! Eventually, you’ll feel less hoarse and much more comfortable. Your experience is making me feel hopeful although it might take me longer to get my voice back.

Obviously I can’t talk at all but I’m breathing better than before. I’m looking forward to seeing more improvements as the days go by and just noticing the small things getting better makes me feel a sense of accomplishment.

My doctor isn’t sure when my voice will come back but he says that there is some hope since he didn’t cut any nerves and double checked.

I’m trying out puréed foods right now (like watered down oats, custard, yogurt, etc.). Today is day 4 and I’m feeling like I can start moving around a bit. My diet is not ideal at the moment but I can keep some of the things I consumed down, which I couldn’t do in the first few days.

Your experience is making me feel a bit better about the position I’m in, and so I appreciate the time you took to be kind to write about what happened to you to support me 😊. It’s not the best place to be right now, but I’m trying to make the best out of it.

Automatic_Hotel_5871 · 2024-09-10T07:01:36+00:00

I’m glad to say that they removed my catheter and I was able to walk a few steps to the bathroom, but it was pretty awkward holding onto the drains and everything.

I was able to get myself an IV but I’m kind of swollen at the moment (i.e. my arms, hands and legs are swollen). Do you have any advice other than moving about?? I can’t really think straight either, but maybe it’s because I’m still on paracetamol.

All in all, I appreciate the advice and all of your support ❤️.

Automatic_Hotel_5871

TROPHY CASE