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papillary thryoid cancer

envoy646
Posts: 8
Joined: Feb 2010

Hi,
I just found out a few days ago that I had papillary thyroid cancer and I was and still
very scared... I have read so much infomation on this type of cancer, down to survival rates, RAI, and if it comes back. I have a docs appt march 3 but i am very scared and just knowing the test that I will have to go thru and the results coming back worry me so much. I have a great support system but everyday my life changes with ups and downs. I just want to know that I am goning to be ok and live a productive life thereafter. Any feedback

IowaBo
Posts: 32
Joined: Feb 2010

Hi, I too have Papillary Cancer. It is scary and even though everyone says it's very treatable you have every right to feel as you do.I had RAI treatment last Wednesday. I go for my body scan tomorrow. I'm pretty new to all of this, but I am surrounded by supportive people and try to live one day at a time. We both have a great chance at living a long healthy life after all of this. My doctor says 99% of people with this cancer are alive ten years later and that the 1% that aren't probably died of something else. Keep thinking positively, but if you need to cry on someone's shoulder DO!!! It's ok.

envoy646
Posts: 8
Joined: Feb 2010

Hi, Iowobo
It's hard and I try not cry, but this is something that I know for the rest of my life I am goning to have to deal with. I am glad to know thru this website there are so many people who have positive outcomes. I am very new just diagnoised a few days ago. My next appt is next week. I have read all I can on this and it seems to be very curable. I have so many questions and I just hope and pray that all goes in my favor... Thanks for responding.. Have you had surgeroy at this point? I don't know the steps so I apologize if I ask something crazy.

IowaBo
Posts: 32
Joined: Feb 2010

I have had 2 surgeries. December 9th was the first one. The initial pathology during that surgery was benign, so the doctor only remover the right side of my thyroid. I thought I was good to go. The final path report showed to cancer spots so I had to go back in for another surgery on December 30th to remove the rest. That was hard, but I recovered fairly quickly. They didn't put me on replacement thyroid meds until I saw the endocrinologist on Jan. 13th. That doc said now they think it's best to start Synthroid right after surgery. She says it prevents your body from trying to make more hormone and increase the chance of more cancer cells being developed , so you should discuss this with your surgeon. I'm new as well, but a bit ahead of you. Ask anything you want. I'll answer if I can. I'll pray with you!!! God is good!!!!

amie
Posts: 6
Joined: Feb 2010

lowabo please add me.. thank you

envoy646
Posts: 8
Joined: Feb 2010

Hi Iowabo,
Thank you so much for the infomation. Honestly I am so overwhelemd and confused.
I am being told that it's one nodule 2.1cm. They set me up with the onocolgist who told me
I don't have to see her but an endo. which I go next week to see. I have my questions
written down (so many of them). I am 39 and I understand some things because I have
gone onto the internet to read up about it. I have many worries and concerns which
most of us do. but I am allowing GOD to step in. I thank u so much for just talking
directly to me because I feel better knowing I am not alone. PLEASE continue to pray
for me as I will do for you. and I will let you know how things go as I follow my
lead with this NEW life...... thank u.

IowaBo
Posts: 32
Joined: Feb 2010

It is best to write down questions. I could never remember all of them if I didn't. I also had my best friend go with me to all of my appointments. She wrote down everything so I could just concentrate on listening to the Dr. and ask questions.
Thank-You so much for your prayers. I will definitely continue praying for you.
About GOD..... I have always considered my self a christian, but I wasn't letting HIM lead me. I thought I was doing a pretty good job handling stuff on my own. I was wrong!!!! Please do let him lead you. There is a reason for everything. We do not need to know what the plan is, just trust in him to take care of us.

amie
Posts: 6
Joined: Feb 2010

i have papillary ca too.. my surgey is done.. all i have to go through is RAI.. please you tell me guys wht to prepare before the session.. thannk you

amie
Posts: 6
Joined: Feb 2010

i have papillary ca too.. my surgey is done.. all i have to go through is RAI.. please you tell me guys wht to prepare before the session.. thannk you

amie
Posts: 6
Joined: Feb 2010

hi lowabo,,
how are you after having RAI? me.. i have to undergo RAI next month my endo told me so.. but i dont really have the idea wht to do beforehand.. please do let me know waht yo did before habing RAI so i might have the idea .. what did you feel now?you ok? wahts the complication?im 23 female..hope to get to know you here.. glad i found thank you

IowaBo
Posts: 32
Joined: Feb 2010

Hi,
You have to do the low iodine diet for 2 weeks before your RAI. You can get a lot of recipes and information on Thyca.org. Stock up on distilled water or filtered bottled water with no salt. Best Choice brand has one. Not spring water. You will need disposable plates and utensils. for when you are isolated. I feel good now. I itched and was a bit nauseated. but it didn't last long. I am 45 and female as well. My endocrinologist said no complications. I was concerned about getting cancer somewhere else from the radiation, but she said that was not a worry. She of course couldn't guarantee that I won't get another cancer, but not from this radiation. More risk not to make sure the Thyroid cancer is gone. I am so glad I can help in any way. I am sorry we have to go through this and especially you at such a young age. Anything I can answer I will.

envoy646
Posts: 8
Joined: Feb 2010

Hi iowabo,
thanks so much for your words again. It is ref.reshing to know that someone really understands you and truly understands your state of mind. I am 39 with 2 teenagers
which to me was easy to talk to than anyone else. LOL I had an appointment today
with my ENT who scheduled me for march 16 for the surgeroy. Total remvoal was
what he suggested. He made me feel comfortable too comfortable actually because
hearing cancer was taken so lightly. However I trust in GOD to lead me through
and it's not my battle for it is his. I will keep you posted with my trail of a
new life in hopes you keep me in your prayers as I WILL do the same for you.
thanks for listening. by the way I did have my LIST of ?ns prepared for the
ENT until he laughed.... This network is the best.

envoy646
Posts: 8
Joined: Feb 2010

Hi may I provide you with my email. (envoy646@aol.com) thanks

dubby88
Posts: 15
Joined: Mar 2010

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

loispol1
Posts: 84
Joined: Feb 2010

You had both surgeries done at the same time? I have a badly herniated disc at C-5-6 and another at C4-5. One at C5-6 (vry bad) is touching the spinal cord. I didn't know they could do the surgery for both at the same time? I am scheduled for TT April 9, and have always wondered could they be taking care of both at same time.

I hope all goes well with your visit on the 17th and you are in the clear. Did you have a spinal fusion also? Please stay in touch. I am so very afraid of the surgery I am having second thoughts, as I am so very allergic to medications (severely). Maybe I am one of the 15-30% that has a beign hurthle cell tumor?

We are around the same age, I am 59 and hope to live as long as my parents and grandparent did, well into the their '90's! Keep your chin up! My parents both had cancer, breast and prostrate and survived well beyond that!

dubby88
Posts: 15
Joined: Mar 2010

Yes both doctors set it up to do at the same time, The thyroid was taken out first and then the neuro. came in and did his thing and then my surgeon came back and closed me up. It work out fine. Neither one of my surgeons had done that before either. It can be done!!
I dint have a fusion at this time doctor just grounded the spur off and hopes that will work althrough they warned me it could come back then we would have to fuse it.
Both my parents died in thier 70's my mom had just turned 70 on the 8 th of November and died on the 30th of November. She been gone 12 years now.I sure wish she was here now to talk to. Everybody I talk to says it just thyroid cancer you are cured they got it all.

Please dont be scared about the surgery. The surgery it self is the easy part.
Yes I will keep in touch with you I want to know whats up with you.

Your new friend
Donna

loispol1
Posts: 84
Joined: Feb 2010

I managed to finally get in touch with one of the nurse anesthetist that does all the work up for pre-op. She will review all my allergy info. and let me know what other "induction anesthesia" they could use. Then, I will fax that to the allergist and hopefully he will be able to order the products for skin testing and get me in quickly, hopefully as the surgery is April 9 and I would want the testing finished before the preop appointments the week before. There is so much involved in all this, I was ready to give up yesterday. I don't want the surgery without any testing (not that it really tells anything 100%). We will see. For me, I am sure the surgery will be the worst of it. I am allergic to iodine and radiological dyes etc. also. So I don't know if I will have any follow up treatments if I have Hurthle cell carcinoma. Part of me wants to forgo the surgery, as they won't know until afterwards, if I actually had cancer. There is a percentage/chance is not cancerous. Still there is so little information out there, hard to tell if a Hurthle cell adenoma would turn into a malignant one in time? I also have over 8 other nodules in my thyroid, and Hasimotos so I am a candidate for surgery...see how my mind is going back and forth? And there is the lump in the front sticking out of my neck below the Adams apple-one of the nodules.
My parents are gone also and I really don't have anyone to talk to about this as I am single. Sorry you mom passed, and she is not here to help you through this. She was too young when she passed!
I need the whole disc repaired as it is sticking into/touching my spinal cord, which is another thing that could go wrong if they put too much pressure on my disc during the surgery...worry, worry, worry, wart that is me right now! I hope the spur removal works for you and you don't have to have more surgery. If I can get through this one, I have the cervical spine C5-6 with bone sour repair surgery.

What type of thyroid cancer did you have? Are you going to have any treatments or scans?

ksblack
Posts: 20
Joined: Mar 2009

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 .

radeohed
Posts: 5
Joined: Mar 2010

I am new to this site and I think I have waited too long for a support network. lol. I was diagnosed with HD June 6th 2008 with stage 3b disease. I am now 24 years old. I received 6 cycles of ABVD Chemotherapy with adverse effects to Bleomyacin after 1 cycle and was taken off. I then received 18 treatment of high dose radiation. I was officially in remission in March of 2009. The worst or at least the most annoying effect has been damage to my memory! I have just had a biopsy on my thyroid for a nudule that was present 7 months ago but was not told about. It has spread to lymph nodes as well. A full lymphodectomy will be done and they want to do radioactive iodine treatments as well. I really think i will opt out because radiation is what is causing my papillary carcinoma now , though I know it is nothing like external radiation. I also have questionable spots on my lung and liver as well. I dont really know what i am asking. any thought will be appreciated. i am afraid i am just going to keep getting cancer after cancer until one of them gets the best of me. sorry for the long post and thank you all. I am really worried about depression and weight gain as a result as well. thank you all, love alicia

weberdns
Posts: 156
Joined: Mar 2010

Don't have any answers as I am newly diagnosed with Follicular Hurthle Cell Thyroid cancer and have not yet experienced the RI. I am just 2 weeks post op from my 2'nd surgery (had the first one 8 days before!) Just wanted to say sorry that you have another type of cancer...What is HD?? Just wanted to send you a hug and send some support your way!

radeohed
Posts: 5
Joined: Mar 2010

HD is Hodgkins disease or hodgkins lymphoma. I am so sorry to hear of your struggle as well. Hugs back to you!

weberdns
Posts: 156
Joined: Mar 2010

Hugs!

jaqueen
Posts: 2
Joined: Apr 2010

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

Momof2plus1
Posts: 4
Joined: May 2010

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
Posts: 8
Joined: Apr 2010

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
Posts: 4
Joined: May 2010

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

rcbert
Posts: 8
Joined: Apr 2010

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.

IowaBo
Posts: 32
Joined: Feb 2010

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.

kkirsits
Posts: 11
Joined: Apr 2010

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.

nasher
Posts: 507
Joined: Apr 2010

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
Posts: 39
Joined: May 2010

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:)

Anika
Posts: 1
Joined: May 2010

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 :)

IowaBo
Posts: 32
Joined: Feb 2010

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

OKTeach1
Posts: 1
Joined: Jun 2010

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
Posts: 32
Joined: Feb 2010

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!!

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