Newly diagnosed Papillary cancer

Papillary Thyroid Cancer Survivor
Hi,

I was diagnosed with Papillary thyroid cancer in Aug 2004 and before I go into any detail, I'd like to reassure you that I am currently thyroid cancer-free, living a perfectly normal, healthy life and fully intending to do so for many many years! I can completely empathize with your fear (I've definitely been there) but there's every reason to believe that your life will return to normal very soon!

I had a total thyroidectomy and they removed a couple of lymph nodes which turned out to be benign. They felt they had caught it early enough that I wouldn't have to have any radioactive iodine treatment (this is commonly given shortly after surgery). My surgery went fine and, just like Vickihol, I woke up with a drainage tube coming from my throat (the incision site). I was in hospital for two or three days and the tube was removed just before I left. I was a bit hoarse for a short while but apart from that, it wasn't bad at all.

Unfortunately for me, after that, my blood work kept showing that there were still some thyroid cells in my body, so they ended up giving me two separate doses of radioactive iodine. These doses didn't eliminate the problem and after changing endocrinologists, in January 2008, I had another surgery. This time I had four lymph nodes removed from my neck - all four contained thyroid cancer. My blood work has been clear ever since - seems like this surgeon really knew what he was looking at!

Hopefully you won't require it, but just in case, my only recommendation from all of this is, if you have the radioactive iodine treatment, and it doesn't appear to have cleared you up completely, don't rush into having a second dose. It's a fairly high dose of radiation so check with another endocrinologist first and see whether surgery is an option instead. I regret not doing this myself. I don't mean to scare you - I'm telling you all of this purely to inform you.

My parathyroids survived OK but I do now take a calcium supplement as a precaution.

Apart from the few days around the operations and the treatments, I have always felt absolutely fine. The scars on my neck are almost completely invisible - certainly no-one knows anything by looking at my neck. Everyone says if you're going to get cancer then this is the one to get because it is so curable - not always of great comfort when you're going through it, but probably true, and I do feel it's one of the easiest ones to cope with.

I'd also highly recommend the website that Vickihol mentioned (thyca.org) - it really is very useful!

I felt the best thing I did was to repeat positive statements to myself to encourage me and my body to cope successfully. As I said at the beginning, there's every reason to believe that your life will return to normal very soon!

Good luck with everything!

number1mommyof5 said:

Thank you Vicki and Texann
I went to the doctor today for little more than an informational visit and to get another bunch of tests ordered.
It seems as if I will have to have a complete thyroidectomy and then a left side neck dissection. This doctor says that since he knows it is in some lymph nodes already he doesn't want to risk it and will remove all the lymph nodes on that side of my neck as well as some fatty tissue in hopes to get it all at once and lessen chance for reacurrance.
I am going for a chest xray and a CAT scan sometime this week I suppose, and I had some blood work done today(not sure what for). I am so scared that it is in my chest for some reason, I guess when you get news like this it is easy to lean towards the worst.
I pray that my chest looks normal and then I think I can start just concentrating on getting through the surgery and being better.
It's weird, had it not been for the lymph node swelling I would not even know I have this for the tumor on my thyroid can not be seen nor felt without ultrasound...I keep thinking "man I don't feel sick what if I just go on how I am now". I then quickly realize (maybe??still trying to, I think), that I have cancer and that I have to do all of these crazy invasive things or I will become sick..
I find strength in all of the posts here, I almost feel selfish for not realizing something like this even existed until a few days ago when I needed you all. I feel this is where I will come to throughout my journey and I thank all of you who are here for listening and caring...
I have a new prayer each night, not only for my own healing but for every struggling and changed individual who deals with disease...
I am scheduled for my first appointment with an endocrinologist on Wednesday morning for I have only seen the ENT who diagnosed...I will keep this site updated..
Thanks for being there....

You are so welcome. When
You are so welcome. When are you having surgery? Keep us posted. Keeping you in my prayers!

nasher said:

it will get better
I had 2 surgeries to do my complete thyroidectomy. this was what they found on me

follicular carcinoma minimally invasive (7.1 cm) and 6mm papillary carcinoma w/ adjacent 2-3mm papillary carcinoma another section 6mm papillary carcinoma and right parathyroid lymph node with thyroid carcinoma 8mm.

i had 2 types of thyroid cancer.. it takes time and will take alot of energy but remember you will win against this cancer.

i also recommend looking up www.thyca.org alot of good info there about all of this

good luck

number 1 mommyof 5
I had papillary thyroid cancer 2 years ago. My dr found my enlarged thyroid while doing a school physical. (Yes, I'm 42 and been going back to school.)
Did a sonogram, then biopsy which proved cancer in thyroid and lymph node in neck.
Surgery took out all thyroid and 6 of the 8 lymph nodes he took out had cancer.
My scar where my thyroid was you can't see anymore but you can still see the scar up the side of my neck from lymph node removal.

Had no meds for 6 weeks after and then radiation. That affects everyone differently, but for me it was awful. (The surgery was a breeze compared to that.)

My Tg level, which should be nondetectable awhile after surgery, was always nondetectable...0.2 for 1 1/2 years.

Now it has gone up and had a sonogram done of my neck and shows that my cancer might be back.
Will find out tomorrow course of action to take next.

If you have to have radiation 6 weeks after surgery, you won't be able to be around anyone for 5 days...especially children. Adults you can be around them no longer than 10 minutes but otherwise have to stay 5 feet away from them. Children can't be around you at all and definately can't sit on your lap...due to radiation accumulating in your bladder.

This site has been a wonderful help to give you the answers doctors don't tell you. They just tell you this is the good cancer to have, but we still have to go through it and have all the side effects.
I have a strong family support, along w/friends. That helps a lot.
Like you said, God won't give us any more than we can handle. I'm trying to remember that now with the possibility of recurrent cancer.
Take care

number1mommyof5 said:

thanks
Oh MLG I will so pray for you, what a crazy whirlwind...I can't even imagine, I am learning all these new feelings with a new diagnosis and you are reliving them 2 years later..I will pray for you every day, I hope that your cancer is not back and if so that it will be an easy go of things.
I had my chest x ray today and hope to learn more tomorrow when I see the endocrinologist, as soon as I am done there I go to have a CAT scan on my neck to see how many lymph nodes are involved surface and deep.
I guess other than hoping that I have a clear chest Xray the thing that is really bothering me right now is the invasive neck surgery, I have read so much on controversy on doing overkill surgery but then again I have also read how many have had to multiple surgeries for it wasn't all gotten...
AHHHHH just makes me want to scream sometimes...Really I wish I could just wake up and this would all be a dream, for all of us...Instead I will take the next step, sleep tonight and wake up tomorrow to go learn more about this disease infecting me.
I wish all the best for all of you..You are in my prayers.

number 1 mommyof 5
About your neck surgery...I will admit that I was nervous also about what it will look like.
I had a wonderful surgeon and have had nurses/nursing teachers tell me afterwards what a wonderful job he did on the side of my neck.
But, for me, right after surgery in the hospital, I will tell you that it was very scarey looking.
They had gauze over the bottom neck portion, mostly it was covering the drain opening you will have for a day or so afterwards.
The gauze covered a little portion of the side of my neck but most of it was exposed.
I asked for a mirror afterwards and my husband wouldn't give me one...just told me I looked fine.
When I went to the bathroom it looked like a Frankenstein scar. I'm not saying this to alarm you.
It was black/purple. BUT, later I found out that it was mostly dried blood and swelling.
And yes, you can still see it 2 years later. It is raised a little and the color is pink.
I went back to work 2 weeks after surgery (I was a CNA in a hospital going to school for my RN) and I feel I was a help to the patients I saw.
(I felt wonderful after the surgery..had to stop working 3 weeks after surgery due to the effects of not being on thyroid meds.)
Yes, I had people looking at my neck while out in public. I was 40 at the time, which I think helped not care as much as maybe a younger person would.
I was told to always put sunscreen on the scar, once it healed. I was also told by physical therapists that, once it has healed, to "exercise" the skin around it everyday. I don't know how to explain it...maybe you could google it.
This keeps the skin from adhearing to the underneath parts and keeps it freely moveable and not stiffen up.
Again, I am not writing this to alarm or worry you. I am the type of person that likes to know what I might encounter. I know everyone is different and one person might have a problem/side effect/outcome that another person might not...but these drs don't tell you everything and I at least like to know what might be out there.
2 years later, I look at my neck and think that it is a sign that the cancer has got out of me. (Of course today I go to my dr to see if it has truely come back!)
You will do fine w/the surgery. God has a plan to use these awful times in our lives to let his light shine.
Michelle

MLG said:

number 1 mommyof 5
About your neck surgery...I will admit that I was nervous also about what it will look like.
I had a wonderful surgeon and have had nurses/nursing teachers tell me afterwards what a wonderful job he did on the side of my neck.
But, for me, right after surgery in the hospital, I will tell you that it was very scarey looking.
They had gauze over the bottom neck portion, mostly it was covering the drain opening you will have for a day or so afterwards.
The gauze covered a little portion of the side of my neck but most of it was exposed.
I asked for a mirror afterwards and my husband wouldn't give me one...just told me I looked fine.
When I went to the bathroom it looked like a Frankenstein scar. I'm not saying this to alarm you.
It was black/purple. BUT, later I found out that it was mostly dried blood and swelling.
And yes, you can still see it 2 years later. It is raised a little and the color is pink.
I went back to work 2 weeks after surgery (I was a CNA in a hospital going to school for my RN) and I feel I was a help to the patients I saw.
(I felt wonderful after the surgery..had to stop working 3 weeks after surgery due to the effects of not being on thyroid meds.)
Yes, I had people looking at my neck while out in public. I was 40 at the time, which I think helped not care as much as maybe a younger person would.
I was told to always put sunscreen on the scar, once it healed. I was also told by physical therapists that, once it has healed, to "exercise" the skin around it everyday. I don't know how to explain it...maybe you could google it.
This keeps the skin from adhearing to the underneath parts and keeps it freely moveable and not stiffen up.
Again, I am not writing this to alarm or worry you. I am the type of person that likes to know what I might encounter. I know everyone is different and one person might have a problem/side effect/outcome that another person might not...but these drs don't tell you everything and I at least like to know what might be out there.
2 years later, I look at my neck and think that it is a sign that the cancer has got out of me. (Of course today I go to my dr to see if it has truely come back!)
You will do fine w/the surgery. God has a plan to use these awful times in our lives to let his light shine.
Michelle

How did your appt go
MLG....How did your appt go yesterday? Are you Ok?