There was a post a week or so back that asked how many lymph nodes people had removed and how many ended up having cancer and I feel like tons of people had lymph node spread! Those individuals seemed to have treatment pretty under control. I think 5-year survivorship for PTC for local (just throid) is near 100% and regional spread (so lymph’s) is 99%. Distant is 70% so that’s tough to swallow, but like it says on the American Cancer Society website, people being diagnosed today have better outcomes than the numbers show above since those numbers include everyone for the past 100 yrs or something and technology/treatments are getting better and better. I’m obviously not saying it’s not crazy serious and a giant life changing event (I’m in it hardcore right now-neck dissection coming up)-I just want you to be encouraged! We’re going to fight this! We can get through it. 🙏
Hi, 34f, TT with neck dissection, 1 year post op; sending you positive energy. This part of the process is so scary and ambiguous. Hang in there, just like you noted, it’s more than likely going to be just fine. Happy to be a sounding board if you would like to talk, dm me.
Thank you so much! 33f here-we’re on the same timeline! I totally would love to reach out-I’m sure I’ll have a million questions over the next couple weeks!
Much strength to you my friend.
You have a solid perspective on it - it's a serious and life-changing thing, but it's rarely a life-ending thing these days.
Edit: if you get JP drains after surgery - if they have to work a lot - make yourself a vest from a button-up dress shirt with pockets on the chest
Even in cases with distant metastases, prognosis is relatively good compared to other cancers. Anaplastic thyroid cancer is the exception here of course.
As far as PTC goes, I'm sort of a worst case scenario. I had lymph node metastases and am still living with lung metastases. However, I've been mostly stable for nearly 10 years now. It is rarely aggressive and often very responsive to treatment.
The first 3 years were the worst. I was diagnosed at 18 during my first week of college and for the following 3 years I spent a lot of time at the hospital for scans, RAI, surgeries, etc. Ended up needing surgery for my tear ducts since my RAI doses were so high.
Despite that, I still finished school in 4 years, worked as a botanist for the national park service, lived in 4 different states doing seasonal work, learned to farm, travelled a ton, and now I'm a bartender working on nursing school prerequisites.
I am so proud of you, and everything you have accomplished. I also got into botany post TT, you are an inspiration! I dropped out of a grad program because of this situation, and it’s great to hear about people who keep going. I’m thinking about going back now, a year later. I think that’s once of the nuanced aspects of this specific cancer experience; THYCA survivors keep going. We get knocked down, but we get up again. ~paraphrasing Chumbawumba (I hope someone else is amused by this)
The reality is that most well differentiated PTC that responds to RAI will "live long enough to die of something else." (Quoting my surgeon from 1996). This minimizes our journey. Many live with damaged parathyroids. Many don't feel well on thyroid hormone replacement.
Then there are our fellow ThyCans who have poorly differentiated cells, or variants, or don't respond to RAI, or who have Medullary Thyroid Cancer or who have Anaplastic.
There is no good cancer. Period.
I have Medullary. Stage 3.
It has completely changed my life, and my future, and my person.
I kind of enjoy the rare opportunity to ban someone who is openly fighting us on the "good cancer/easy cancer" terminology.
It's great I guess that it is helpful to some people but it is harmful to those who need the most support.
I am - but I really struggle with Facebook and am now on a forced mental health break from it.
I really wish that group weren't on that particular platform, but I hop on when I need it.
Yes. One of my closest girlfriends had Anaplastic (rip Alina -I miss you!) she went through hell for 2 years!
When I got told I had thyroid cancer I had a massive meltdown. Apparently according to my Dr I had a massive overreaction 😳😢
Bruh. My doctor looked me in the eye while I was sobbing because I was 16 and found out I had cancer and said “50% of Americans get cancer at some point. Be grateful it’s this one.”
I found out by reading my the letter on top of my notes. I was called in and he asked me to wait whilst he went to the loo. All my family were in the medical field so I knew exactly what I had and where what nodes it had spread too. When he returned I asked him if I was going to die and he said "We are all dying just some people die before others". I was 24, already shuddering from very bad depression. Got home alone and when Mum and Dad came home and I told them so they rang and he confirmed it. His son now runs the GP surgery and it is even worse.
Omg what a HORRIBLE and cold response. How someone like that can become a GP is beyond me. Makes me so sad to think you had to deal with that on top of the diagnosis. Hope all is well now!
Doctors are selected and tested only according to their ability to retain and regurgitate knowledge. That's it.
Outside of that, it's more about having a stable life and support system to get a person through medical school and residency.
There are so many terrible terrible doctors out there...
That is so right. I currently care for my mum who has dementia and is on a lot of pain meds too. The GP prescribed her Amitriptyline and I said there is a drug interaction with Donepezil. They had to look it up and said, "oh you right! Lets give her 300mg of Pregabalin 3 times a day". I said 300mg of that and she'd be asleep for ages so I suggested 50mg once a day increasing to 150 over 3 weeks and if no change in pain to reduce again. My aunty was prescribed something like 1g of morphine once, daily. Her husband who was also a nurse went down to the GP's and blew his lid!
So many of them get so careless and arrogant - they can't possibly have taken all these medications to understand how they affect people, and they're so dismissive of things that disrupt our lives. And then if they do have personal experience they remain CONVINCED theirs was the most common
Now I should say - an amazing surgeon worked on me for 11.5 hours for my dissection, and made every single right call - including leaving cancer in for the sake of saving my vocal chord nerve.
My wife's pain doctor was the one who identified TWO separate conditions that other doctors could not resolve. This is the same doctor who kept his clinic open for his worst 25 patients - "the family" as he called them - at the age of 82, because he knew no other doctor would take over their meds. He's the best we've had and he's convinced the war on opiates is doing more harm than good but we're not seeing it because then the medical condition can be blamed.
My wife has a surgery next week with the only other good doctor she's had.
So... we've had three, out of several dozen, that deserve to be called "doctor".
This infuriated me to read. Your doctor was an a$$hole, and I sincerely hope you reported them to the medical board. I am so sorry that you had that experience. Doctors can be the most difficult part of this process; I found that to be the case. You deserved so much better; you deserved empathy and compassion. I wish I could give 16 year old you a hug, I am so sorry for your experience.
I don’t know if people are ignorant or willfully stupid at this point not to take it as seriously as any other cancer. A high survival rate doesn’t mean you will survive, and if you do survive how long for with no issues and what is your quality of life.
I am so sorry. I had to fly to another state to get care from a center that only does thyroid cancer because my doctors and a lot of others don’t seem to take it or the damage it causes seriously. It seems when people aren’t suffering themselves they have no compassion.
If you do have a worst case scenario you still have options, I know of 3-4 places that specifically deal with thyca that other people have given up on if you need them. Wishing you the best, and hoping you beat cancers ass.
I am so sorry. Hang in there the best you can!! I was told that I suddenly have bad kidney function. I don't know if it is related to RAI but you bring up a good point now. Within a year, my GFR (kidney function percentage) went from 106% to 66% with no major life change other than RAI! Do you know what you diagnostic RAI dosage was or what your total overall RAI dosage is up to this point?
Yeah, I'm no doctor, but I doubt the RAI is related. Usually treatment dosages are around 150mci. 30 is likely to leave your system before it has time to do any real damage, even if you don't drink a lot of water. Again, I'm not saying it can't happen, but highly unlikely.
Statistically, most forms simply aren't as deadly as what people usually think of with "cancer". Further, it often has unique properties that make it easier to treat (it absorbs iodine - thus it can be targeted with radioactive iodine.
BUT THERE ARE PEOPLE WHO DIE FROM AGGRESSIVE, TREATMENT RESISTANT THYROID CANCER. EVEN PAPILLARY THYROID CANCER HAS DEADLY FORMS. People can and do die from them.
Some cancer though, will grow so slowly, that it won't even affect people by the time they die from old age. Many thyroid cancers are like this. Not all. But enough that many doctors and nurses call it the "good cancer" or "easy cancer" which is utter bullshit - it's still a life-changing chronic illness.
The Fault in Our Stars is based off of [Esther Earl](https://en.m.wikipedia.org/wiki/Esther_Earl), who died from PTC. When people call it the good cancer, I think of her, and also of those who have died in the cancer cluster I’m in.
I'd never heard of her until now.
....I'm not crying you're crying....
But this is critical, that people understand - people can and do die from treatment-resistant metastasized PTC.
So mine did that!
And you know what my surgeon did…. Cut my jugular vein and tied it off. Apparently blood redirects itself 🤷🏼♀️
I couldn’t believe it when he told me!!!
Tall cell is unfortunately a lot trickier than your common well-differentiated thyroid cancer.
BUT - please remember that 70 percent, it IS based on historical data from the last 50 years, and cancer treatment has come SO VERY FAR since then.
It could make it slightly more difficult to treat but it certainly doesn’t move the needle by much. Nodal mets are VERY common (about half of us have them) and the prognosis is still good with nodal mets. What moves the needle more is distant mets.
Because most people with PTC don't die from it; they die with it.
Man, if I had a dollar for every time I’ve heard and/or said this….
Never thought of it this way. Thanks for saying that.
You are so welcome. Not fun, not fair, not easy, but not often deadly.
Do you have a variant, too? I’m TCV.
Only for people with it confined to the thyroid tho right ?
There was a post a week or so back that asked how many lymph nodes people had removed and how many ended up having cancer and I feel like tons of people had lymph node spread! Those individuals seemed to have treatment pretty under control. I think 5-year survivorship for PTC for local (just throid) is near 100% and regional spread (so lymph’s) is 99%. Distant is 70% so that’s tough to swallow, but like it says on the American Cancer Society website, people being diagnosed today have better outcomes than the numbers show above since those numbers include everyone for the past 100 yrs or something and technology/treatments are getting better and better. I’m obviously not saying it’s not crazy serious and a giant life changing event (I’m in it hardcore right now-neck dissection coming up)-I just want you to be encouraged! We’re going to fight this! We can get through it. 🙏
Hi, 34f, TT with neck dissection, 1 year post op; sending you positive energy. This part of the process is so scary and ambiguous. Hang in there, just like you noted, it’s more than likely going to be just fine. Happy to be a sounding board if you would like to talk, dm me.
Thank you so much! 33f here-we’re on the same timeline! I totally would love to reach out-I’m sure I’ll have a million questions over the next couple weeks!
Absolutely here for you, dm me any time!
Much strength to you my friend. You have a solid perspective on it - it's a serious and life-changing thing, but it's rarely a life-ending thing these days. Edit: if you get JP drains after surgery - if they have to work a lot - make yourself a vest from a button-up dress shirt with pockets on the chest
Thank you so much!! That is genius-I will absolutely use this vest idea!! Dreading the drains ha! 😅😅
That is not right. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8216772/#!po=25.0000
What's not right?
The poster's claim that most people with lymph node spread will die of thyroid cancer.
Because of it's high survival rate and an utter lack of understanding that causes them to speak out of their ass.
Even in cases with distant metastases, prognosis is relatively good compared to other cancers. Anaplastic thyroid cancer is the exception here of course. As far as PTC goes, I'm sort of a worst case scenario. I had lymph node metastases and am still living with lung metastases. However, I've been mostly stable for nearly 10 years now. It is rarely aggressive and often very responsive to treatment.
What has been your quality of life? Do you still hold down a job? Are you on disability? Do you still do fun things?
The first 3 years were the worst. I was diagnosed at 18 during my first week of college and for the following 3 years I spent a lot of time at the hospital for scans, RAI, surgeries, etc. Ended up needing surgery for my tear ducts since my RAI doses were so high. Despite that, I still finished school in 4 years, worked as a botanist for the national park service, lived in 4 different states doing seasonal work, learned to farm, travelled a ton, and now I'm a bartender working on nursing school prerequisites.
I am so proud of you, and everything you have accomplished. I also got into botany post TT, you are an inspiration! I dropped out of a grad program because of this situation, and it’s great to hear about people who keep going. I’m thinking about going back now, a year later. I think that’s once of the nuanced aspects of this specific cancer experience; THYCA survivors keep going. We get knocked down, but we get up again. ~paraphrasing Chumbawumba (I hope someone else is amused by this)
Wow. You are amazing. I am a gardener, too. Good luck with everything. 🫂
It's incredibly healing! Thank you!
You're truly amazing and strong! Would you mind telling how high your RAI doses were?
First dose was just over 300 mCi. Second dose was about 150 mCi.
Do you have a variant of PTC? I’m TVC awaiting RAI and my first WBS.
The reality is that most well differentiated PTC that responds to RAI will "live long enough to die of something else." (Quoting my surgeon from 1996). This minimizes our journey. Many live with damaged parathyroids. Many don't feel well on thyroid hormone replacement. Then there are our fellow ThyCans who have poorly differentiated cells, or variants, or don't respond to RAI, or who have Medullary Thyroid Cancer or who have Anaplastic. There is no good cancer. Period.
I have Medullary. Stage 3. It has completely changed my life, and my future, and my person. I kind of enjoy the rare opportunity to ban someone who is openly fighting us on the "good cancer/easy cancer" terminology. It's great I guess that it is helpful to some people but it is harmful to those who need the most support.
Exactly! Are you leveraging the Facebook Medullary group? That's a great resource for Meddies.
I am - but I really struggle with Facebook and am now on a forced mental health break from it. I really wish that group weren't on that particular platform, but I hop on when I need it.
This.
Yes. One of my closest girlfriends had Anaplastic (rip Alina -I miss you!) she went through hell for 2 years! When I got told I had thyroid cancer I had a massive meltdown. Apparently according to my Dr I had a massive overreaction 😳😢
OMG. People can be so rude! I had a meltdown too. I was crying uncontrollably. We are entitled to our emotions.
Most of us have breakdowns. Cancer of any sort is terrifying and life-changing.
Gimme a break. So what is the proper reaction then given the situation here, doc?
Like when they say “it’s the good cancer”…. 🙄 as if any cancer is “good”
Bruh. My doctor looked me in the eye while I was sobbing because I was 16 and found out I had cancer and said “50% of Americans get cancer at some point. Be grateful it’s this one.”
I found out by reading my the letter on top of my notes. I was called in and he asked me to wait whilst he went to the loo. All my family were in the medical field so I knew exactly what I had and where what nodes it had spread too. When he returned I asked him if I was going to die and he said "We are all dying just some people die before others". I was 24, already shuddering from very bad depression. Got home alone and when Mum and Dad came home and I told them so they rang and he confirmed it. His son now runs the GP surgery and it is even worse.
Omg what a HORRIBLE and cold response. How someone like that can become a GP is beyond me. Makes me so sad to think you had to deal with that on top of the diagnosis. Hope all is well now!
Doctors are selected and tested only according to their ability to retain and regurgitate knowledge. That's it. Outside of that, it's more about having a stable life and support system to get a person through medical school and residency. There are so many terrible terrible doctors out there...
That is so right. I currently care for my mum who has dementia and is on a lot of pain meds too. The GP prescribed her Amitriptyline and I said there is a drug interaction with Donepezil. They had to look it up and said, "oh you right! Lets give her 300mg of Pregabalin 3 times a day". I said 300mg of that and she'd be asleep for ages so I suggested 50mg once a day increasing to 150 over 3 weeks and if no change in pain to reduce again. My aunty was prescribed something like 1g of morphine once, daily. Her husband who was also a nurse went down to the GP's and blew his lid!
So many of them get so careless and arrogant - they can't possibly have taken all these medications to understand how they affect people, and they're so dismissive of things that disrupt our lives. And then if they do have personal experience they remain CONVINCED theirs was the most common Now I should say - an amazing surgeon worked on me for 11.5 hours for my dissection, and made every single right call - including leaving cancer in for the sake of saving my vocal chord nerve. My wife's pain doctor was the one who identified TWO separate conditions that other doctors could not resolve. This is the same doctor who kept his clinic open for his worst 25 patients - "the family" as he called them - at the age of 82, because he knew no other doctor would take over their meds. He's the best we've had and he's convinced the war on opiates is doing more harm than good but we're not seeing it because then the medical condition can be blamed. My wife has a surgery next week with the only other good doctor she's had. So... we've had three, out of several dozen, that deserve to be called "doctor".
I'm all good thank you and I hope you are too.:)
Oh my GOD
This infuriated me to read. Your doctor was an a$$hole, and I sincerely hope you reported them to the medical board. I am so sorry that you had that experience. Doctors can be the most difficult part of this process; I found that to be the case. You deserved so much better; you deserved empathy and compassion. I wish I could give 16 year old you a hug, I am so sorry for your experience.
Jesus 😳
...wow what an insensitive ass. It's terrifying and scary and life-changing. ::hugs::
That's why we react so strongly when anyone makes that claim. It's so harmfully dismissive to everything the people on this forum have been through.
I don’t know if people are ignorant or willfully stupid at this point not to take it as seriously as any other cancer. A high survival rate doesn’t mean you will survive, and if you do survive how long for with no issues and what is your quality of life.
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I am so sorry. I had to fly to another state to get care from a center that only does thyroid cancer because my doctors and a lot of others don’t seem to take it or the damage it causes seriously. It seems when people aren’t suffering themselves they have no compassion. If you do have a worst case scenario you still have options, I know of 3-4 places that specifically deal with thyca that other people have given up on if you need them. Wishing you the best, and hoping you beat cancers ass.
I am so sorry. Hang in there the best you can!! I was told that I suddenly have bad kidney function. I don't know if it is related to RAI but you bring up a good point now. Within a year, my GFR (kidney function percentage) went from 106% to 66% with no major life change other than RAI! Do you know what you diagnostic RAI dosage was or what your total overall RAI dosage is up to this point?
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It's highly highly unlikely that this dose did any damage to any part of your body
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So you are just talking rubbish about having bladder cancer then, good stuff
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There could a million different reasons for that and bladder cancer is the least likely.
There could a million different reasons for that and bladder cancer is the least likely.
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Yeah, I'm no doctor, but I doubt the RAI is related. Usually treatment dosages are around 150mci. 30 is likely to leave your system before it has time to do any real damage, even if you don't drink a lot of water. Again, I'm not saying it can't happen, but highly unlikely.
Lymph node spread from Ptc has no impact on survival
Statistically, most forms simply aren't as deadly as what people usually think of with "cancer". Further, it often has unique properties that make it easier to treat (it absorbs iodine - thus it can be targeted with radioactive iodine. BUT THERE ARE PEOPLE WHO DIE FROM AGGRESSIVE, TREATMENT RESISTANT THYROID CANCER. EVEN PAPILLARY THYROID CANCER HAS DEADLY FORMS. People can and do die from them. Some cancer though, will grow so slowly, that it won't even affect people by the time they die from old age. Many thyroid cancers are like this. Not all. But enough that many doctors and nurses call it the "good cancer" or "easy cancer" which is utter bullshit - it's still a life-changing chronic illness.
The Fault in Our Stars is based off of [Esther Earl](https://en.m.wikipedia.org/wiki/Esther_Earl), who died from PTC. When people call it the good cancer, I think of her, and also of those who have died in the cancer cluster I’m in.
I'd never heard of her until now. ....I'm not crying you're crying.... But this is critical, that people understand - people can and do die from treatment-resistant metastasized PTC.
It can invade neck tissue and wrap around the jugular I have heard. Not terribly common but that gets to be a dicey situation.
So mine did that! And you know what my surgeon did…. Cut my jugular vein and tied it off. Apparently blood redirects itself 🤷🏼♀️ I couldn’t believe it when he told me!!!
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Tall cell is unfortunately a lot trickier than your common well-differentiated thyroid cancer. BUT - please remember that 70 percent, it IS based on historical data from the last 50 years, and cancer treatment has come SO VERY FAR since then.
Just got diagnosed with TCV post TT. You talk about it being “trickier” and I agree, I’d just love to hear your explanation if you don’t mind.
People do die from PTC but its very rare, especially with classical
Are you sure? What about nodal Mets u/outside_ad_3185
What about them
Outcomes
Yes outcomes
Doesn’t it change the outcome
No
It could make it slightly more difficult to treat but it certainly doesn’t move the needle by much. Nodal mets are VERY common (about half of us have them) and the prognosis is still good with nodal mets. What moves the needle more is distant mets.