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New Diagnosis of Papillary Thyroid Carcinoma

Wendy S.
Posts: 2
Joined: Apr 2012

I just got my diagnosis on March 29 and have been recommended to a surgeon for a total thyroidectomy. This is all so new so I'm mostly wondering what should I be prepared for in terms of surgery prep/recovery? Any resources you could recommend for someone new to this diagnosis?

Thanks for any help, I really appreciate it!

stelles
Posts: 5
Joined: Apr 2012

I had a thyroidectomy in August and was diagnosed with thyroid cancer. The surgery lasted several hours. The biggest problem post-surgery, other than the expected pain (for which you'll received medication, so don't be afraid of it) was getting my calcium/magnesium/potassium levels regulated. You'll probably have an endocrine specialist for that. They had to remove two of my parathyroids as well and I now have to take large doses of supplements (calcium, magnesium, and potassium) and will probably have to continue to do so as my remaining parathyroids don't seem to be doing the job. I was hospitalized for five days and back to work in two weeks. (I teach at a Univ., so by "back to work" I mean in the class room for 8 hours a week, which is not like going back to a 9-5 job.) I had RAI treatment in Nov. and am having vision problems that I think may be related to that. Other than that, 8 months after surgery I am feeling well. The surgery is difficult; I'd never portray it as easy. But with cancer we don't really have much choice, do we? I am relieved to have it out of my body and can say that I feel better now than I did this time last year. Good luck to you and God bless!

galinbakersfield
Posts: 23
Joined: Apr 2013

stelles, I had the same problems after surgery. (complete thryoidectomy and 2 parathyroids, with cancer & hashimotos desease)  I was actually so bad that 1 day after being released from the hospital I was admitted again for 6 days for sever tetnany. not fun at all.Then after that, I was in and out of the ER for IV infusions of mag/pot. I was so low I was in the level to have heart attacks. I was on calcitriol, vitamin d, 2000mg of calcium, and multi vitamins. I am now 5 years out from surgery and I've been calcium free for almost 2 years. The only time I get low is if I get a bad stomach bug or food poisening. (food poisening put me in hospital for low calcium for 4 days) but it should level out eventually. Now I may possibly be having reoccurance of cancer, but Dr asured me it wont affect my calcium. :)

peterz54's picture
peterz54
Posts: 229
Joined: Feb 2012

go to NCCN website. they have a physicians guide for each type cancer which might be of help in understanding how your doctor will treat you.

NCCN

Gideyupgrl
Posts: 3
Joined: Apr 2012

I had total thyroidectomy surgery last year March after waiting almost 6 months after diagnosis of Pappilary Carcinoma to make the decision to do so. Surgery itself was very smooth with mild discomfort. I was talking right away with no voice changes. My parathyroids recovered well and fortunately I did not need calcium supplementation. Following my endocrinologists recommendation I did radioactive iodine treatment followed by a whole body scan. The radiation was not bad other than being in isolation for a week. Even going off my meds temporarily was not nearly as bad as I anticipated. I go in for blood testing every 2 months to monitor my Thyroglobulin and thyroid levels. My best advice is do your research and ask lots of questions. You will become a Thyroid expert after all this. My best to you and be strong.

-G

Carolyn62
Posts: 1
Joined: Apr 2012

I had a full thyroid removal on March 8th of this yr. Being older, 62, it may have been a little worse. They had a hard time getting my calicum level to stay as needed. What should have been a one night stay ended being 5 days. I am going to my first visit to an endocrinologist Monday. I have ben told I will have the radioactive iodine soon. I have questiuons. Hope I don't sound to stuipid. Will I lose myu hair? Is the nausea really bad? Of course I know the treatment is worth the chance of saving my life, I just have been told nothing as far as what to expect by the other dr. I have seen. I had the surgery by a reg. ear nose and throat Dr and was told I had a 5% chance of cancer. 3 weeks later got a call that I had both types of cancer on my thyroid nodules. WOW what a shock. I have read of some good results but worry as the path. results said the Hurthle cell was Minimally invasive with angioinvasion. Has anyone had a reportr like that??

Jugabug
Posts: 3
Joined: Dec 2012

Yes my biopsy has a positive malignacy hooray papillary carcinoma and hurthles cell.  Haven't talk to anyone yet as I just asked for a copy of my report. I see a  general surgeon on Monday. Any suggestions foe me?  Did you have any symptoms?  I am 61 and my regular lab results from yearly physical showed a rise of TSH Their skied for a follow up US because of a nodule my gastrologist had found about a year ago and now I am just waiting to talk the Dr and what is the next step.  Sounds like good prognosis but I don't know what t he RI treatments mean..hope this inquiry finds you well. 

Vondalene
Posts: 1
Joined: Mar 2013

I also was diagnosed with thyroid cancer with spindle cells! The radioactive iodine treatment will not make yolooses your hair, nor do you have nausea from it! Went very well, except for the isolation part, which actually gave me some alone time to reflect on life! Good luck with your treatment, as I know you will do very well with it!

 

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Exactly, the biggest part of RAI is the isolation afterwards, the second biggest part is the restrictive diet before hand.  I never had any hair loss {I should say any more hair loss} nor did I experience nausea or any other side effect.  It's my understanding that very few people who take RAI do.

 

Alan

babysis11
Posts: 4
Joined: Apr 2012

First let me say I'm sorry for your diagnosis. It's very much a scary thing to hear. Today is the 1 year anniversary of getting my diagnosis so the thoughts and feelings of that day are hitting me throughout the day. I was given great advice when I was first diagnosed by others who have survived cancer (other types). They said to just take some time to be upset, to cry, to be angry, whatever emotions arise, allow it to happen. Indulge in some chocolate or other favorite food. Give yourself that time and then stand tall and say, "okay, it's time to beat this".

I really took the mental attitude of 'this is just like breaking an arm and can be fixed' and it was a matter of I will be cancer free, I just have to go through the steps to get there. I told my doctor I wanted to line up everything to happen as quickly as is safe so we can get it all done. Especially since I wanted to get through it and the waiting period to be able to get pregnant. I was diagnosed a few months before my 2nd wedding anniversary and my husband and I were ready to start trying for a family when we got the diagnosis.

As for the surgery, I had 2. The first was to remove the left half of the thyroid and it was the labs from that surgery that found the cancer cells. The second surgery was 4 months later. They were both fairly identical with the exception of the neck pain after the first one. The strange thing was it was the back of the neck, I think the muscles. We think it was from the way my head was positioned for the surgery. The pain did not occur after the second surgery. My surgeon does not believe it pain medicine other than regular strength tylenol after the surgery. At first that scared me, but after the first surgery I realized nothing stronger was needed. There was a little pain in the incision area but nothing horrible. The back of the neck pain was 100 times worse than any pain around the incision. My external stitches were removed the next morning and steri-strips used for another week and a half. The doctor said this was to help reduce the scarring. I went home the day after surgery with just regular strength tylenol and tums for the calcium.

One thing I made a mistake on the first time was not moving my neck around enough after the surgery. My neck muscles were so stiff for the first few weeks. As long as your doctor says it's okay you'll want to slowly stretch your neck muscles often. After my follow up where the doctor removed the steri-strips he recommended I rub Vitamin E just above and below the incision to help the scar fade. I've been using that daily since the first surgery in March 2011.

Do you know yet if you will be doing RAI treatment? This response is getting long so I can share my experience with that if you want me to in another post.

The most important thing to do is to keep a positive attitude. I'm sure you've heard this, I heard it A TON when I was first diagnosed is that if you are going to have cancer, thyroid cancer is the one to get. Highly treatable and very high success rate. I kept reminding myself of that and I just didn't let it get me down.

Oh, and on a positive note, I had my RAI done in September and on September 12th the doctor said I can call myself cancer free! So it's been 7 months now that I've been able to say that. And my husband and I are starting to discuss starting that family we've been wanting for over a year. :)

Beep1967
Posts: 3
Joined: Apr 2012

I know exactly what you are feeling and your concerns. I was there myself back in 1994. At that time I was 27 years old and the youngest female in 27 years to have this form of thyroid cancer as bad as I did. To make a long story short, my thyroid cells is what doctors today study and I can proudly say that thanks to a fantastic doctor who saved my life on his birthday in July that year.
I underwent a total thyroidectomy which was all cancer and the thyroid capsule "exploded" and the cancer went into the base of my head, and my heart was sitting in it and my vocal cords were affected. I underwent thorastic suregery (incision like open heart patients have) to clean under my heart and around, so I am not only cut and stitched across my throat but down my chest plate as well.

My first suregery was to remove just the thyroid itself, but when the doctor removed only half the thyroid, noticed the capsule broke and came out and told my family it spread throughout my chest, there was nothing he could do and closed me up. Devestating to my family, and myself, I did not hesitate one minute to find a doctor to help. I was actually scheduled to go to the Mayo Clinic once they heard of my rare case but they gave me a doctor in RI who was if not as good as them, BETTER! So I did just that at RI Hospotal.

Surgery is generally 3-4 hours depending on the "severity" and extent of the cancer. I was under for almost 8 hours. When I woke, my voice was very raspy and low but that cleared up in about a week BUT after all these years, my voice fluctuates in tone, and a dull ache in my cords I still get. My voice will never be the same as before as the cancer was scraped from the cords. But I have a voice, not as loud and prominent which may be a good thing I'm told, hahaha but I have one. I can no longer sing soparano as I used to but Im here and that is all that matters.

Now if you are lucky that allt hat is to be removed is the thyroid, then recovery is not bad at all.No heavy lifting and your neck will be swollen for a few weeks but this is normal. Be sure when the doctor tells you that you can use Vitamin E oil or another oil on your incision you do, this will allow ease of movement and heal the scar cleanly. I had dissolving stitches so it was itchy, DONT SCRATCH!!

I WENT BACK TO WORK AFTER 5 OR 6 WEEKS.

Good luck and God Bless. If you have any questions, let me know
Diana

Wendy S.
Posts: 2
Joined: Apr 2012

Thank you all so much for sharing your stories and advice. It really helps. I have my TT scheduled for May 9th and have mixed feelings about it. On one hand I'm looking forward to having a plan and getting this out and on the other I'm having anxiety about such a major procedure. I'm very lucky though to have a wonderful support system and I really like my surgeon. I have been told that after I've recovered I will need to do RAI which is disappointing. Much like Babysis11 my husband and I were looking forward to starting a family soon and now it looks like it will have to wait until I'm cancer-free.

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Wendy,

Thyroid cancer in 90% of patients is rather simple..
The radioactive Iodine is precautionary and you will be glad you did it in the long run.
I am sure you and your husband will be ready to start your family before you know it.. speak to your doctors.
For me the hardest part is the LowIodine Diet. The thing I try to tell new member of my thyroid cancer support group is that it is low iodine.. no no salt..
As for the surgery the recovery is usually rather simple..
For me it felt like I was hit with a baseball bat in the next for about a week. and I had a horse voice for a month.
Follow up with a reputible endocronologist.

Know everyone has their own experience.
Best of luck... Donna :)

Denise007
Posts: 1
Joined: Dec 2012

Hello,
I am wondering if anyone can share how they got their diagnosis? I've been treated for my hypo for over a year now, feeling mostly ok, still a little sluggish, but way better than before. My dr is concerned Im a littler hyper - if anything I think I need a little more medication. Why I'm on this site is because I am cocerned that my TPO antibodies still coming out >6500, my Family Practice dr has not addressed this at all. Also I occassionally get horse and she didnt think it was related. I have searched signs and sypmptoms but mostly only find folks who have had the diagnosis.
Should I reqest a workup/boipsy if that is what it is? Any feedback is welcomed.
Thanks

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi Denise,

If I were you, and if your insurance/wallet can do it, I'd get an appointment with an endocrinologist. Someone who specializes in thyroid disorders should be able to answer your questions. I don't think a biopsy would be in order, but a sonogram might be a good idea. If the sonogram shows something suspicious, hopefully not, then perhaps a biopsy would then be in order. For your horseness, an endosopy might be a good idea, but I think you'd probably need to see a different specialist, an ENT, for that.

To answer your first question, I was first diagnosed with thyroid cancer when a lymph node in my neck swelled and didn't go down after "wait and see" for three months. The node was removed and the lab said Papillary thyroid cancer. I never had any hypo or hyper symptoms before my total thyroidectomy. My endo has me a little hyper now and I may have some symptoms from that.

Alan

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Wendy,

Thyroid cancer in 90% of patients is rather simple..
The radioactive Iodine is precautionary and you will be glad you did it in the long run.
I am sure you and your husband will be ready to start your family before you know it.. speak to your doctors.
For me the hardest part is the LowIodine Diet. The thing I try to tell new member of my thyroid cancer support group is that it is low iodine.. no no salt..
As for the surgery the recovery is usually rather simple..
For me it felt like I was hit with a baseball bat in the next for about a week. and I had a horse voice for a month.
Follow up with a reputible endocronologist.

Know everyone has their own experience.
Best of luck... Donna :)

babysis11
Posts: 4
Joined: Apr 2012

How are you doing Wendy? What came of your appointment?

michelle beddy
Posts: 8
Joined: Mar 2013

hi diane 

just reading your story    my partners got to have another operation    on his lymph nodes   and they are going to cut his chest   as it is arkward to get to in the neck   im a bit worried this time as he sed he will be poorley    he already as had 2 operations for  his lymph nodes removed   never ending roller coaster      was you poorley after the operation di  thanks   michelle uk

 

Roni1961's picture
Roni1961
Posts: 8
Joined: Dec 2012

I am 51 years old and I just got my diagnosis results yesterday. I go see the surgeon on Wednesday for a consult and to set up my thyroidectomy. I'm pretty sure that we caught it in the very early stage. My hormone levels are all in the normal range. I had some unexplained weight gain over the past 6 months and have been very exhausted so I asked my doctor to check my thyroid when I went in for my yearly physical. He noticed a lump in my throat and ordered an ultrasound. The ultrasound showed punctate calcifications which in turn resulted in a biopsy. I searched the internet about what it could mean, so I was pretty much prepared for the diagnosis of papillary carcinoma. I am however concerned about the after treatment. What is involved in the radiation treatment, is it painful? Will I get sick? Do I need to take off work? I just like to know what to expect so that I can mentally prepare myself.

babysis11
Posts: 4
Joined: Apr 2012

Hi Roni.

 

While everyone is different in how they react to pretty much everything, I can tell you my experience with the RAI treatment was rather boring.  I drank the radioactive iodine at the hospital and they sent me how with some anti-nausea medication and told me to suck on some hard candies (preferrably something sour but not required).  I went home and locked myself in our bedroom and waited until my next appointment to check my radiation level.  My husband made all my meals and brought them to me.  I threw my trash away in a bag in the room and gave it to my husband every day to throw out.  I think we were probably a little more over cautious than would be necessary, but we weren't taking any chances of me damaging his thyroid of the cats' thyroids.  I never did get nauseous (not sure if I just wouldn't have or if the medication they gave me kept it away).  You won't be able to be around other people so you will have to take off work.  They may even keep you in the hospital depending on the regulations of your state.

For me it was just the entire time locked in my bedroom (leaving just to use the bathroom) watching TV, sleeping, reading, doing anything I could on the internet.  It sounds like a great vacation but after a couple days you start going nuts! :P

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Babysis,

This sounds the same as mine except that I didn't have nausea medicine nor did I experience any nausea.  I didn't go quite as far as you did staying away from people, having meals with others, but I did stay away from others {and pets} at all other times {TV, reading and internet, plus I went for walks too}.

==

Roni,

Be sure to do your own laundry and to flush twice.  Drink as much water as possible, I drank a glass everytime I went to the bathroom plus two or three glasses with each meal {I drink a lot of water anyway, so this wasn't a problem}.  99% of the RAI they give you will be expelled in your urine & feces within 2 days {amost all of this is in your urine, drink a lot of water to get it out as quick as possible}.  Of the other 1%, I think maybe half is taken up and you sweat the rest away {IIRC my uptake was measured at .3%}.

 

Alan

 

doctortad
Posts: 15
Joined: Aug 2011

Hi,

I've been going nuts just being at home for the past two weeks and having to "take it easy." I didn't even find out about the RAI isolation untill 2 days ago. I am not looking forward to it. Besides, this whole thyroid thing has taken away all of my remaining sick and vacation time.

I joined this site several years ago after my wife was diagnosed with a rare and aggressive form of cancer (she's still in remission). I never thought that I'd need my membership for me. None of my blood relatives have had cancer, yet I lost my first wife (years after our divorce) to breast cancer. Weird. I hope we don't pass it on to our kids. 

T.

JustAnnie
Posts: 12
Joined: Dec 2010

I was the same age as you when I had my thyroid removed due to lots of nodules and goiter both sides, only to be told 2 weeks later it came back with papillary cancer on both sides.  I was only off work 2 days after surgery.  I have a desk job so not a lot of physical labor there.  Radiation was a breeze.  I had a relatively small dose and just took 3 days off as directed by the Dr. As for radiation portion, in my experience, I showed up, had some type of uptake test results, sipped the concoction through a straw and went home! The way they handle the stuff is a bit scary, like it is an atomic bomb and the geiger counter to check the level is a bit disconcerting but I felt perfectly fine just radioactive...  Good luck!

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