papillary thryoid cancer

jaqueen

thyroid ca
I had papillary thyroid cancer five years ago i had thyroidectomy and radioactive iodine i do body scan every year for five year i stop last january i have my good and bad dayes i am still scared it may come back but i thank god that i am still kicking it (lol)may god bless and keep u u are going to be ok with god help

Anika

hi lowaBo
Hi, Im 34 and I found out abt my papilarry thyroid cancer a few days ago. I'd love to talk with you. please give me your contact email or skype, if possible, thanks in advance

Momof2plus1

jaqueen said:

thyroid ca
I had papillary thyroid cancer five years ago i had thyroidectomy and radioactive iodine i do body scan every year for five year i stop last january i have my good and bad dayes i am still scared it may come back but i thank god that i am still kicking it (lol)may god bless and keep u u are going to be ok with god help

Hi,
How did you feel after
Hi,

How did you feel after your surgery? I am going for my surgery on Monday. Today I feel sooo, soo scared. I don't know if I will need radioactive iodine, my surgeon said he won't know till the surgery is done. I had surgery to remove a thyroid cyst that was normal and that was when they found the cancer. It's been about a month since that surgery and my throat just started feeling somewhat normal when I eat. I think the breathing tube really caused much of the pain that I was feeling when I ate and swallowed. How long did it take for you to feel somewhat normal with swallowing and stuff? I know I know it's going to be somewhat tough finding the right dose for they thyroid medication and that blood tests will be a constant thing but I just have so many questions.

Thanks!

rcbert

Momof2plus1 said:

Hi,
How did you feel after
Hi,

How did you feel after your surgery? I am going for my surgery on Monday. Today I feel sooo, soo scared. I don't know if I will need radioactive iodine, my surgeon said he won't know till the surgery is done. I had surgery to remove a thyroid cyst that was normal and that was when they found the cancer. It's been about a month since that surgery and my throat just started feeling somewhat normal when I eat. I think the breathing tube really caused much of the pain that I was feeling when I ate and swallowed. How long did it take for you to feel somewhat normal with swallowing and stuff? I know I know it's going to be somewhat tough finding the right dose for they thyroid medication and that blood tests will be a constant thing but I just have so many questions.

Thanks!

My 12 year old daughter had
My 12 year old daughter had a total thyroidectomy on January 21. 2010. She was drinking approx. 4 hours after her surgery she was a little sick to her stomach. Maybe because of her age but she has recovered great, as for the pain she said it wasn't that bad.

Momof2plus1

rcbert said:

My 12 year old daughter had
My 12 year old daughter had a total thyroidectomy on January 21. 2010. She was drinking approx. 4 hours after her surgery she was a little sick to her stomach. Maybe because of her age but she has recovered great, as for the pain she said it wasn't that bad.

Oh my goodness 12 is so
Oh my goodness 12 is so young. I hope she is doing ok now. Is she on thyroid meds?

IowaBo

Momof2plus1 said:

Hi,
How did you feel after
Hi,

How did you feel after your surgery? I am going for my surgery on Monday. Today I feel sooo, soo scared. I don't know if I will need radioactive iodine, my surgeon said he won't know till the surgery is done. I had surgery to remove a thyroid cyst that was normal and that was when they found the cancer. It's been about a month since that surgery and my throat just started feeling somewhat normal when I eat. I think the breathing tube really caused much of the pain that I was feeling when I ate and swallowed. How long did it take for you to feel somewhat normal with swallowing and stuff? I know I know it's going to be somewhat tough finding the right dose for they thyroid medication and that blood tests will be a constant thing but I just have so many questions.

Thanks!

Ask away.
Hi,
This is the place to ask whatever you want. You shouldn't be afraid to ask anything. We have all been there and are still there!. I had my last surgery on December 30th, 2009. Just now am not having the choking sensation when I yawn and swallow. ENT said It could take 6 months for it to get better.

rcbert

Momof2plus1 said:

Oh my goodness 12 is so
Oh my goodness 12 is so young. I hope she is doing ok now. Is she on thyroid meds?

She is doing pretty good,
She is doing pretty good, just went to the ENT her whole body scan went well and now her TSH levels are high they had to double her meds she is taking levox(generic for synthroid). Will have to have blood work again in three weeks and see how the levels are then.

kkirsits

IowaBo said:

Ask away.
Hi,
This is the place to ask whatever you want. You shouldn't be afraid to ask anything. We have all been there and are still there!. I had my last surgery on December 30th, 2009. Just now am not having the choking sensation when I yawn and swallow. ENT said It could take 6 months for it to get better.

Questions
Hi -- I was diagnosed with papillary thyroid cancer three years ago and have been seeing my endo every three months. When I was first diagnosed it didn't hit me what I would be going through the rest of my life (the surgeon told me that I would be maxing out my insurance for the next five years with scans, follow up visits, blood work, radiologists appts, ultrasounds, etc.) I finally convinced my endo to let me come in every six months.

Well this is my third year out and I'm finally realizing the cost of everything and guess what -- I can't afford it. I can't have the scan done, I can't have blood work done, I can't even go to the doctors. I have a high deductible on my insurance and the money I bring home on a monthly basis just covers basic living expenses -- rent, utilities, food and gas for the car. At this point in my life I have told my doctor that I can no longer continue coming in for appointments, have scans, or blood work done.

I guess my guestion is, can the doctor deny writing me my RX for synthroid since I am no longer following orders?

This has been really scared, concerned and worried because I don't know what to do if I can't have synthroid prescribed.

I have no one to help me out financially and my family is totally clueless. Their attitude is, "Well do you have to have these tests done every year? They took your thyroid out, so now you are cancer free -- you're a cancer survive." Of course the one I love is, "Well why do you have to keep going back to the doctor?" Thanks for letting me vent. I know that God only gives us what we can handle and to make us stronger, but I don't feel that I'm stronger and I'm sure having a hard time handling it.

IowaBo

Anika said:

hi lowaBo
Hi, Im 34 and I found out abt my papilarry thyroid cancer a few days ago. I'd love to talk with you. please give me your contact email or skype, if possible, thanks in advance

Hi,
Sent you a message
Hi,
Sent you a message through the CSN email. Hope you are doing well.

nasher

kkirsits said:

Questions
Hi -- I was diagnosed with papillary thyroid cancer three years ago and have been seeing my endo every three months. When I was first diagnosed it didn't hit me what I would be going through the rest of my life (the surgeon told me that I would be maxing out my insurance for the next five years with scans, follow up visits, blood work, radiologists appts, ultrasounds, etc.) I finally convinced my endo to let me come in every six months.

Well this is my third year out and I'm finally realizing the cost of everything and guess what -- I can't afford it. I can't have the scan done, I can't have blood work done, I can't even go to the doctors. I have a high deductible on my insurance and the money I bring home on a monthly basis just covers basic living expenses -- rent, utilities, food and gas for the car. At this point in my life I have told my doctor that I can no longer continue coming in for appointments, have scans, or blood work done.

I guess my guestion is, can the doctor deny writing me my RX for synthroid since I am no longer following orders?

This has been really scared, concerned and worried because I don't know what to do if I can't have synthroid prescribed.

I have no one to help me out financially and my family is totally clueless. Their attitude is, "Well do you have to have these tests done every year? They took your thyroid out, so now you are cancer free -- you're a cancer survive." Of course the one I love is, "Well why do you have to keep going back to the doctor?" Thanks for letting me vent. I know that God only gives us what we can handle and to make us stronger, but I don't feel that I'm stronger and I'm sure having a hard time handling it.

well being that you need
well being that you need thyroid replacement for the rest of your life they better not be able to deny you prescription for it.

Mind you I am new to this all myself as well (just recovering from Radio Iodine)

as far as your family and such not sure what to say to them except. the scans they do can only determine so much and the yearly followups are needed to determine if the cancer has reoccurred.

i think the saying should be as i have seen it before "in response to god only gives..." ... Sometimes I wish he(god) didn't trust me so much.

right now I'm getting prepared for my visit to my shrink (first time since radiation therapy) last time he saw me I was on the wonderful Low Iodine Diet and off my thyroid replacement in prep for my therapy.

He told me last time that I am his only patient who is going through cancer treatments and such so its a learning experience for both of us.

@ all new to this. I seriously recommend you write down most the questions and discussions that we are having here and discuss them with your doctors (so many questions you can pick up from others) it is amazing how much they will actually tell you if you start with the knowledge base we share here and ask them questions.

trust me we all need to vent sometimes and need someone to be able to vent to.

skcalkins

kkirsits said:

Questions
Hi -- I was diagnosed with papillary thyroid cancer three years ago and have been seeing my endo every three months. When I was first diagnosed it didn't hit me what I would be going through the rest of my life (the surgeon told me that I would be maxing out my insurance for the next five years with scans, follow up visits, blood work, radiologists appts, ultrasounds, etc.) I finally convinced my endo to let me come in every six months.

Well this is my third year out and I'm finally realizing the cost of everything and guess what -- I can't afford it. I can't have the scan done, I can't have blood work done, I can't even go to the doctors. I have a high deductible on my insurance and the money I bring home on a monthly basis just covers basic living expenses -- rent, utilities, food and gas for the car. At this point in my life I have told my doctor that I can no longer continue coming in for appointments, have scans, or blood work done.

I guess my guestion is, can the doctor deny writing me my RX for synthroid since I am no longer following orders?

This has been really scared, concerned and worried because I don't know what to do if I can't have synthroid prescribed.

I have no one to help me out financially and my family is totally clueless. Their attitude is, "Well do you have to have these tests done every year? They took your thyroid out, so now you are cancer free -- you're a cancer survive." Of course the one I love is, "Well why do you have to keep going back to the doctor?" Thanks for letting me vent. I know that God only gives us what we can handle and to make us stronger, but I don't feel that I'm stronger and I'm sure having a hard time handling it.

New Here
Hi,I had my surgery on May 6. Was supposed to just take out the right Thyroid because 6 mo. ago it wasn't cancer. Everyone was so sure that it wasn't cancer that the surgeon had already starting stiching me up when the biopsy came back cancer. My calcuim levels dropped and they keep me an extra day in the hospital. When I went home they had me on 3000mg of calcuim and had to get my blood drawn every 3 days. Now I'm down to 1000 g a day and have to get blood work this Friday. Weds. will be my 2 weeks of no Thyroid meds, they didn't put me on a low iodine diet,is this normal. I supposed to go for the full body scan soon. My Drs nurse saud she would be calling soon. Today is the first day that I have felt really really tired. It feels like my bones hurt. Thanks for letting me share:)

ksblack

dubby88 said:

I too had papillary cancer
I just had surgery on the 12 of February. I had a FNA done back in July and they said no cancer. I also had a large bone spur on my neck at c6 and c7. So I have to wait until both doctors could schedule me at the same time. Anyway surgery is done and the report came back as papillary cancer. I dont know yet if I have to have this RAI or not it was small but I still worry one little cell got loose and will land somewhere else. I'm a 61 year old woman so when they say people can live 10 years after surgery chances are I might not live another ten years anyway.
I go to the surgeon on the 17 I dont know if this is where I find out if I need to do the RAI or if I might have to go back to the Endo doctor or not.

Thanks for reading.
Donna

Hang in there, I have been
Hang in there, I have been in remission for 3 years now. I have never felt the same as before but I am still in the race. It is scary but keep a positive attitude and take notes.

This is the best site I have been to for information and prayers.

God bless you .

OKTeach1

IowaBo said:

Hi,
Sent you a message
Hi,
Sent you a message through the CSN email. Hope you are doing well.

Question
A search for information about a disc problem and a thyroid removal 7 months ago led me to this site. It caught my attention because I was told about two weeks after my surgery that a nodule was determined to be papillary thyroid cancer. As I am reading the many posts about further treatment I am being thankful that I did not have to go through anything. But it also makes me a little nervous because my surgeon seemed very absent-minded several times. They could not determine if two nodules were cancerous using the FNA so they decided to do surgery. I was told that they would know while I was on the operating table if it was cancer and the entire thyroid would have to be removed. I was told right after surgery that they didn't know for sure so took the entire thyroid just to be safe. Then I was told they would know before I was released. They still did not know. Five days after surgery I had to call the surgeon's office (as instructed) and beg them to take a few minutes to read the report and tell me if it was or wasn't cancer. They finally did when my husband called them. I was told that I didn't have cancer. Then two weeks later I received the paper work that I asked them to fill out for my insurance and it said that the diagnosis was papillary thyroid cancer. I was shocked and called the surgeon's office. The nurse told me that the large nodule that they were sure was cancerous was suspicious, but it could not be determined. The smaller nodule which was only 1.5 mm was the one determined to be papillary cancer. They told me nothing needed to be done since the thyroid was taken. All I needed to do was start taking the thyroid medication. When I ask my regular doctor any questions he tells me that I need to contact the surgeon. I will not do that because of all that I have been through with him. I regret not backing out of the surgery and asking for someone else. Did I not have to have further treatment because the nodule was so small or are there different types of papillary thyroid cancer? I hope someone can give me some answers. Thanks!

IowaBo

OKTeach1 said:

Question
A search for information about a disc problem and a thyroid removal 7 months ago led me to this site. It caught my attention because I was told about two weeks after my surgery that a nodule was determined to be papillary thyroid cancer. As I am reading the many posts about further treatment I am being thankful that I did not have to go through anything. But it also makes me a little nervous because my surgeon seemed very absent-minded several times. They could not determine if two nodules were cancerous using the FNA so they decided to do surgery. I was told that they would know while I was on the operating table if it was cancer and the entire thyroid would have to be removed. I was told right after surgery that they didn't know for sure so took the entire thyroid just to be safe. Then I was told they would know before I was released. They still did not know. Five days after surgery I had to call the surgeon's office (as instructed) and beg them to take a few minutes to read the report and tell me if it was or wasn't cancer. They finally did when my husband called them. I was told that I didn't have cancer. Then two weeks later I received the paper work that I asked them to fill out for my insurance and it said that the diagnosis was papillary thyroid cancer. I was shocked and called the surgeon's office. The nurse told me that the large nodule that they were sure was cancerous was suspicious, but it could not be determined. The smaller nodule which was only 1.5 mm was the one determined to be papillary cancer. They told me nothing needed to be done since the thyroid was taken. All I needed to do was start taking the thyroid medication. When I ask my regular doctor any questions he tells me that I need to contact the surgeon. I will not do that because of all that I have been through with him. I regret not backing out of the surgery and asking for someone else. Did I not have to have further treatment because the nodule was so small or are there different types of papillary thyroid cancer? I hope someone can give me some answers. Thanks!

Hi,
My advice is that you
Hi,
My advice is that you find an endocrinologist that specializes in thyroid cancer. Have all of your records sent to them before your appointment and have them go over all of them with you. There are a lot of factors that depend on your further treatment. Age is one of them along with the size and number of cancerous nodules as well as if it has spread to the lymph nodes. Please do not ignore this. Yes, Thyroid cancer is VERY treatable, but it cannot be ignored. Please keep us informed. May God bless you!!