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Newly diagnosed Papillary cancer

number1mommyof5
Posts: 10
Joined: Jul 2010

Hello,
I am very new to this and very scared, nervous and hopeful all at the same time.
7 months ago when I was 7 months pregnant I found a few swollen lymph nodes on the left side of my neck. After 4 doctors, having a baby, amoxicillan, penicillin, etc. Finally I was given a biopsy last Tuesday and the pathologist immediately told me I had thyroid cancer.

Although my lymph nodes are swollen and the thyroid cancer cells were found in them, my thyroid nodule is not able to be felt by hand.. I am thankful that I now know what is going on but am very fearful at the same time.

I have read that papillary cancer is very curable and that it is pretty common for it to be in the near lymph nodes but I am scared that it could be elsewhere in my body and don't know what the prognosis is if it is.

I have five children ranging from 14 to my new guy which is 4 months...I am nursing and I think that it is killing me the most knowing I am going to have to stop. I just feel that so much is changing, so much is out of my control..I am scared that I won't be here to raise my kids, I am scared of everything. I am 36 and pray that I can live to see all of my children grow up..

I know that God doesn't bring us to something that he won't see us through, but as much as I have tried convincing myself I can be strong I just can't seem to be.

I think finding this site was for a reason and I hope that there are some of you out there who can possible share information with me that can educate and help me feel a bit more secure in my new living condition.

I see the doctor Monday the 26th, I think it is to talk about the surgery. I would imagine that the surgery will be right away but don't know for sure on that either. I have never had surgery and that alone is scaring the crud out of me...I know they will remove my total thyroid and at least the infected lymph nodes if not all on that side? Unsure for only information I have is the nonstop reading I have been doing.

Has anyone else had lymph nodes removed as well as a total thyroidectomy? What was healing time like? Was there a hospital stay? I just have to try and start planning getting my baby on a bottle and training someone to care for him the way I do...

Thanks for listening..

vickihol
Posts: 12
Joined: Jun 2010

I had a total thyroidectomy on June 3. Seven years ago my doctor had discovered a nodule in my right thyroid while he was treating me for something totally unrelated. I have had biopsys each year since then with benign results. This May, the results showed atypical cells. I opted to have the total thyroidectomy since he had since found a nodule in my right thyroid and this had been going on so long.

The surgery is not bad. It takes about two hours. My incision is about two and a half inches. You will have a small drainage tube when you come from surgery. Mine was removed the next mornign. A little painful to swallow the first day or so, but they will give you pain medicine for that. Soft food diet the first day, and then I could eat what I thought I could handle.

I had my surgery on Thursday and went home Friday morning. What my doctor didn't tell me was that the parathyroid will more than likely go into shock because of the surgery, and this can cause your calcium levels to drop. And, that is exactly what mine did. Long story short, I wound up back in the hospital Saturday and had to stay two more days to get the calcium and magnesium and potassium levels where they should be. Please talk to your doctor about this before you go home from the hospital. Or you may be like me and have the symptoms while you are still in the hospital, but not realize what is causing it. Symptoms of this are tingling around your nose and mouth, tingling in your feet and/or hands, a feeling of heaviness in your legs. At least these were my symptoms. If this had not happened, the whole procedure would have been much better.

My pathology report showed papillary cancer. My doctor was not expecting this, but I was not really surprised. He said it was very small and was contained totally inside the thyroid. My first visit with the endocrinologist is in a couple of weeks, and he will discuss treatment with me.

You are right. God will not lead you to something without seeing you through it. I know God's hand was on me when my doctor first found the nodule. It was totally by accident, and if he hadn't found it then I would still have that cancer growing inside me. Probably for a long time yet.

I hope I haven't rambled too much. Have you been to the website thyca.org? There is a lot of good information there. Like you, I have tried to read everything I can on the subject. Please keep me posted on your situation. Praying for you!

Texann
Posts: 1
Joined: Jul 2010

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
Posts: 10
Joined: Jul 2010

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....

vickihol
Posts: 12
Joined: Jun 2010

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

nasher
Posts: 507
Joined: Apr 2010

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

MLG
Posts: 52
Joined: Mar 2010

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
Posts: 10
Joined: Jul 2010

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.

MLG
Posts: 52
Joined: Mar 2010

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

Queenvwr
Posts: 4
Joined: Jul 2010

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

BeeBee300
Posts: 5
Joined: Apr 2010

I had a total thyroidectomy and radical neck dissection days before Christmas 2009. The surgery lasted 6.5 hours. 24 lymph nodes removed. The cancer had spread to the nodes away from the thyroid not next to it, which was a surprise. They didn't pick up any cancer in the left lobe but the pathology following surgery showed it was totally full of cancer, both papillary and follicular. The right side totally taken up with papillary carcinoma.

My parathyroids were killed accidentally during my surgery. The surgeon was someone I knew and requested because I felt he was superb. Unfortunately he was desperate to get on holiday that day, so I guess I drew the short straw.

All I can say is that the initial diagnosis and surgery seems terrifying, but after a few weeks you will gradually come to terms with things and start to get back to normal. Make sure you have a good endocrinologist, someone who will listen to you (rare I have found, but achievable) and make sure that you let them know how you feel on your meds, anything that you feel isn't right, no matter how small you think it is.

You will survive and start to feel good again, but you will need to give yourself time and allow yourself some 'me time'.

If you can get liquid (or dissolvable) pain meds and liquid calcium and Vitamin D to take in with you, I would do so. I found this the worst bit, the nurses gave me huge calcium tablets and pain killers but with major neck surgery it was excrutiating to swallow, I dreaded it. They don't stock the liquid form. If you can get them, do take them in. It will make life easier!!

I hope all goes well for you and you are back up and running shortly.x

MLG
Posts: 52
Joined: Mar 2010

The appt went OK.
My Tg level was very low...good.
But there was that small mass in neck area. He isn't 100% sure if it is cancer w/out more tests.
He is ordering another body scan w/thyrogen injection.
One thing that could have saved us all this questioning is that when my surgeon ordered my last body scan in March w/thyrogen injection he should have done bloodwork to see what my Tg level was on thyrogen and he did not. (I had no idea about this bloodwork when you have thyrogen injection)
So, this dr doesn't really know if anything was going on because no bloodwork (even though scan was clean...it didn't show the small mass like the ultrasound did.)

So now another test and waiting.
If it is tissue that isn't cancerous do they usually give you radiation to get rid of it?
Michelle

number1mommyof5
Posts: 10
Joined: Jul 2010

Michelle--I am so glad that your levels seem to be low and will just pray and pray that the lump is nothing and the scan comes back clean...So sorry you are dealing with this all again!
BeeBee--Thanks for the info,,,Really I love getting as much as I can, I feel this can somehow bridge that huge gap of the unknown a little anyway..

My chest xray looked good.(Thank you Jesus)..I was told if the disease is neck defined only that I have a great chance of a long life but they will not know for sure until I have the iodine and scan which will be a little while later for I have a newborn so things will go a little slower for me..
My surgery is scheduled for August 26th for now it may move up to the 19th though...

Love talking with you all and love all the info you can give me...I feel like I have more hope on this site that anywhere in my life right now.

My family and I are off to camping as we speak ( I need some time to try and be normal,,Is that the word normal? Wow I think I just realized how different I really feel about life in general..)so I won't be on until Sunday but I will check in and update then....

You (and then some) are all in my prayers!
Take care
*HUGS*

Queenvwr
Posts: 4
Joined: Jul 2010

It is my understanding from my Dr that ANY thyroid tissue would need to be destroyed with the radiation to prevent possible reoccurance. I have had blood work done..o..maybe every 10 days for the last 3 mths it seems like. Maybe not THAT often but close enough.
Im glad your levels were low though. I am told it may take 6 mths to a year to get mine that low again. :(
With regards to your other post about how long I was hypo...yes...19 days. I was told 2 weeks is more than enough and that anything longer than that was not such a good thing. I hesitate to say dangerous because I dont remember if he used those words but " unadvised" was used. They had me on a temporary pill that was easy to start and stop for 3 weeks after surgery, then had me stop for 19 days to have treatment, then on the day I took my therapy dose I was allowed to start a new pill to get ramped back up.
I see by reading everyones posts that each Dr seems to vary a bit on thier idea of what is safe and what is not.
Good luck chicka!! I am sending good thoughts your way!

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