It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Thyroid Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 01-20-2009, 07:27 PM   #1
Newbie
(female)
 
Join Date: Jan 2009
Location: nyc
Posts: 5
nymomtot HB User
Need help...just got diagnosed with papillary thyroid cancer

Hello, I just found this board and am seeking your assistance.I have a toddler and have been going out of my mind since my doctor called me with the cancer news.

I am a 47 yr old and had a FN biopsy. I have a 2.5cm mixed echoic, hypervascualr solid nodule in my right lobe at upper pole (papillary thyroid cancer). I also have a nodular goiter -right lobe lower pole and a nodular goiter with cystic degeneration on the left lobe midpole.

I would appreciate any and all help with my questions:
1. Is 2.5 cm, considered large? In reading on the internet, this seems to move me into stage 2?
2. Can this type of cancer spread?
3. What is the prognosis?
4. Would you recommend a second opionion
5. In the NY area, would you recommend - NYU or Sloan Kettering?

Thanks in advance for the support and guidance.

 
Old 01-21-2009, 06:03 AM   #2
Senior Member
(female)
 
Join Date: Nov 2008
Location: northern kent county
Posts: 195
melissa1873 HB User
Re: Need help...just got diagnosed with papillary thyroid cancer

You came to the right site for answers and support. I do know that it is said that if you're to have a cancer, thyroid cancer would be the one you would want. It is usually very easy to treat. That is all I can offer for you. I am Hashimotos and just had my FNB yesterday. They said they should have results by the end of the week. The FNB was much easier than I thought it would be but I didnt like the continuous jabbing back n forth once they found where they wanted to be. Anyway, I wish you the very best and I'm sure you'll get more posts answering your questions. Keep us updated!

 
Sponsors Lightbulb
   
Old 01-21-2009, 06:22 AM   #3
Member
(female)
 
Join Date: Nov 2008
Location: New Jersey
Posts: 88
sophiesmom59 HB User
Re: Need help...just got diagnosed with papillary thyroid cancer

I have a friend who is a thyroid cancer survivor who used Sloan Kettering. It wasn't just thyroid cancer, it also had spread to some lymph nodes. She still has a few lymph nodes that they're keeping an eye on. She loved the hospital and doctors there.

Hope that helped!

 
Old 01-21-2009, 08:23 AM   #4
Senior Veteran
(female)
 
Join Date: Mar 2007
Location: us
Posts: 1,693
famnd HB User
Re: Need help...just got diagnosed with papillary thyroid cancer

I know you must be worried sick. My daughter was in the same boat last Jan. In general the prognosis is excellent with papillary Cancer. Remember biopsies are not always correct although the fact that it is hypervascular is a red flag. The only sure way to find out is to have the thyroid gland removed entirely or just one side.

You want the best surgeon you can find. Usually ENT's do more thyroidectomies. Ask what his or her infection rate is & side effect rate (especially in regard to the voice box (larynx & parathyroids.)

There are lots of people here with experience to respond to your post. Ask all the questions you want.

Are you having any problems breathing, swallowing, talking or other indications that the nodule is causing pressure symptoms?

Fam

 
Old 01-21-2009, 09:19 AM   #5
Veteran
(female)
 
Join Date: Jun 2007
Location: Texas
Posts: 361
golfhat HB Usergolfhat HB Usergolfhat HB User
Re: Need help...just got diagnosed with papillary thyroid cancer

As a general rule papillary cancer is nothing to fear. My brother's doc said many people with papillary die of something else before thyroid cancer gets them. So relax.

My brother had pap cancer 20 years ago at 24, and had his thyroid removed and some lymph nodes as well.

He drank the RAI which unfortunately, caused him to have ulcerative colitis after a few years.
However, that probably is because my family tends to have lactose intolerance and IBS. It is manageable.

My little bro did very well. The recovery took about 6 weeks total. They did not start him on thyroid meds until the 6 weeks had passed --they allowexd time for any remaining cancerous thyroid tissue to grow.
then, they scanned again for cancer.

By the end of the 6 weeks he was extremely fatigued. After the scan they put him on his meds and he bounced back quick and has been fine ever since.

he did have to get off his meds a year or so later COMPLETELY, and was checked AGAIN, and then put back on his meds. he said when you are off the meds it is pretty bad.

he is 44 now and married with two children and is great. He said it was just a "bump in the road" for him and never thinks about it anymore. It is funny too because he is a radiologist and sees umpteen thyroid nodules mostly in women.

I would think they would take the whole thyroid if you have a malignancy. I mean where do you think the little malignant seedlings are going to go? Right next door...to the next lobe.

 
Old 01-21-2009, 09:47 AM   #6
Veteran
(female)
 
Join Date: Jun 2008
Location: Utah, USA
Posts: 313
DR37 HB User
Re: Need help...just got diagnosed with papillary thyroid cancer

Hi there! Hope my experience can help you. similar story here: diagnosed with papillary tyroid cancer in June, stage 3 (my biggest 3 nodules were 4.2, 3.5 and 2.5). It had also spread to at least 3 lymph nodes. Was given double dose of RAI (radioactive iodine) in August. The surgery is not too bad to recover from, but definitely ask your Dr. about taking Calcitrol. Parathyroid glands control your calcium lvls and they can get shocked from surgery. I was in the hospital an extra 5 days trying to get it under control. The worst part of the whole thing is keeping on a VERY strict low-iodine diet (you basically have to cook everything from scratch) while having more fatigue, achiness and brain fog every day. My TSH got up to 164 before I was able to take the RAI, which requires you to be pretty solitary for a week. Oh, and do NOT take a multivitamin with iodine in it!!! That was my big mistake :P

Is there a silver lining? YES! Thyroid cancer is the easiest to deal with with a HUGE success rate (like 95%). I would DEFINITELY talk to someone about taking out the whole thyroid. There are complications with regulating medication when part of it is left in, not to mention the higher risk of the leftover side becoming cancerous as well. You don't want to have to do this twice, that's for sure. Best of luck and keep us updated on your progress

~Desert Rose

 
Old 01-21-2009, 06:07 PM   #7
Newbie
(female)
 
Join Date: Jan 2009
Location: nyc
Posts: 5
nymomtot HB User
Re: Need help...just got diagnosed with papillary thyroid cancer

Quote:
Originally Posted by famnd View Post
I know you must be worried sick. My daughter was in the same boat last Jan. In general the prognosis is excellent with papillary Cancer. Remember biopsies are not always correct although the fact that it is hypervascular is a red flag. The only sure way to find out is to have the thyroid gland removed entirely or just one side.

You want the best surgeon you can find. Usually ENT's do more thyroidectomies. Ask what his or her infection rate is & side effect rate (especially in regard to the voice box (larynx & parathyroids.)

There are lots of people here with experience to respond to your post. Ask all the questions you want.

Are you having any problems breathing, swallowing, talking or other indications that the nodule is causing pressure symptoms?

Fam
Thanks so much for the information, I am meeting with a surgeon tomorrow and will make sure I ask him these questions. I will most definitely keep you posted. I am not having any problems breathing, talking or swallowing, which was why I was shocked when the dr. came back to me with this diagnosis. I have had a persistant cough, but not sure if it is due to the dry indoor air/heat.

How long did your daughter take to recover? I have a high energy 3 yr old at home.

BTW, your daughter is very lucky to have such a supportive parent.

 
Old 01-21-2009, 06:18 PM   #8
Newbie
(female)
 
Join Date: Jan 2009
Location: nyc
Posts: 5
nymomtot HB User
Re: Need help...just got diagnosed with papillary thyroid cancer

Quote:
Originally Posted by DR37 View Post
Hi there! Hope my experience can help you. similar story here: diagnosed with papillary tyroid cancer in June, stage 3 (my biggest 3 nodules were 4.2, 3.5 and 2.5). It had also spread to at least 3 lymph nodes. Was given double dose of RAI (radioactive iodine) in August. The surgery is not too bad to recover from, but definitely ask your Dr. about taking Calcitrol. Parathyroid glands control your calcium lvls and they can get shocked from surgery. I was in the hospital an extra 5 days trying to get it under control. The worst part of the whole thing is keeping on a VERY strict low-iodine diet (you basically have to cook everything from scratch) while having more fatigue, achiness and brain fog every day. My TSH got up to 164 before I was able to take the RAI, which requires you to be pretty solitary for a week. Oh, and do NOT take a multivitamin with iodine in it!!! That was my big mistake :P

Is there a silver lining? YES! Thyroid cancer is the easiest to deal with with a HUGE success rate (like 95%). I would DEFINITELY talk to someone about taking out the whole thyroid. There are complications with regulating medication when part of it is left in, not to mention the higher risk of the leftover side becoming cancerous as well. You don't want to have to do this twice, that's for sure. Best of luck and keep us updated on your progress

~Desert Rose
Thank you for your advice and support. Until I found this board I have been extremely worried and depressed. I am more hopeful, I have a 3yr old I need to see grow up. I will make sure I speak to my doctor on the calcitrol.

How long was the surgery, the wait period for the RAI and how long did it take for you to feel better from the day of the surgery?

 
Old 01-21-2009, 06:24 PM   #9
Newbie
(female)
 
Join Date: Jan 2009
Location: nyc
Posts: 5
nymomtot HB User
Re: Need help...just got diagnosed with papillary thyroid cancer

Thank you !!! Your information is very helpful. I am glad to hear your brother is doing well.

I will plan to be out for six weeks. I was also leaning on removing both lobes, even though I have it on the right side only.

 
Old 01-21-2009, 06:32 PM   #10
Newbie
(female)
 
Join Date: Jan 2009
Location: nyc
Posts: 5
nymomtot HB User
Re: Need help...just got diagnosed with papillary thyroid cancer

Quote:
Originally Posted by melissa1873 View Post
You came to the right site for answers and support. I do know that it is said that if you're to have a cancer, thyroid cancer would be the one you would want. It is usually very easy to treat. That is all I can offer for you. I am Hashimotos and just had my FNB yesterday. They said they should have results by the end of the week. The FNB was much easier than I thought it would be but I didnt like the continuous jabbing back n forth once they found where they wanted to be. Anyway, I wish you the very best and I'm sure you'll get more posts answering your questions. Keep us updated!
Thank you for your reply. This is the best site to come to, the support is incredible. I will keep everyone posted. I wish you the best too!

 
Old 01-22-2009, 09:02 PM   #11
Veteran
(female)
 
Join Date: Jun 2008
Location: Utah, USA
Posts: 313
DR37 HB User
Re: Need help...just got diagnosed with papillary thyroid cancer

NY Mom tot (such a cute name, by the way),

Surgery does not usually take very long, about 2 hours. Mine was 4 because it was so rampant. My thyroid ended up being like 11 cm long and creeping under my collar bone...ugh. Anyway, depending on how you recover from anesthesia, you will feel pretty icky that first day. My poor daughter (she's 3, too!) was in my recovery room when they wheeled me in and it scared her to see me so completely out of it and unable to hardly move. I recommend your little one stay with someone until you are really lucid and can put on the Happy Mom, Everything-is-OK face. As with any surgery, you don't feel super but in most cases you go home w/in 24 hours. Again, the calcium thing made me feel worse (I would get major dizzy spells and nausea). The Calcitrol they give you takes 3-4 days to work in your system, which is why I recommed asking your Dr. if you can start it beforehand. There was hardly any incision pain except a sore throat. You won't want to turn your head, but it's important to move it around the next day a little (and lots more afterward) so you don't get stiff.

The wait time for RAI (which was nearly 1 and 1/2 months for me) is not very bad at first, but you get progressively worse every day (more tired, achy, mentally sluggish). You'll probably feel pretty good weeks 2-4 after surgery, then go downhill after that. Some Dr.s prescribe Cytomel for the first few weeks, then wean you off before RAI. I didn't get any, and made the mistake of RUINING my low-iodine diet by taking a multi w/ iodine in it, so I had to wait an extra week and a half. That last two weeks was pretty miserable, BUT you can start taking thyroid meds on day 2 of RAI and by the end of that isolation week, you can go up and down stairs without feeling like you've run a marathon or have your arms burn from lifting a jug of milk!

For the long-term: you feel SO much better being so hypo before RAI, and that lasts for quite a while. Then reality sets in (or work, haha) and you start to realize it's going to take a while before you really feel good. Something I didn't realize was that your body and the RAI is STILL killing cancer up to 5 months afterward! So give yourself time, take it slow, and don't beat yourself up if you're not at 100% after a month. It also takes some time for your medication to get regulated. Just be patient and positive! Your little one is lucky to have you, and you will be around for many years to come!!!

~Desert Rose

P.S. Sorry I wrote so much, but I hope it gives you a "head's up"

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
New Papillary Cancer Diagnosis - Help VDonaher Thyroid Disorders 3 03-08-2009 04:54 PM
Need some support!!!!! cardshark Cancer 9 07-22-2008 12:55 PM
Papillary Thyroid Cancer - 2 differing doc opinions, what to do? mom2emnlex Cancer: Thyroid 13 02-08-2008 05:18 AM
Oleander- Help Me 11marie11 Thyroid Disorders 6 01-25-2007 09:40 AM
Newbie - just had Thyroidectomy 3/13 KimBossFan Thyroid Disorders 7 03-24-2006 04:08 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



Reece (19), Linda1652 (11), thyroidmess (8), debmc1958 (3), bare501 (3), Tisha Mac (2), Jamie09 (2), Yannick (2), sman65 (2), kasens mommy (1)

Site Wide Totals

teteri66 (1167), MSJayhawk (1000), Apollo123 (899), Titchou (836), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 11:12 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!