Aa
Aa
A
A
A
Close
Avatar universal

PAPILLARY CARCINOMA (FOLLUCAR VARIANT)

I have a 16 year old daughter diagnosed in March 08 with Papillary Carcinoma (follucar variant).  She had 3 operations (3 March and 10 March 08) Recently (9 July 08).  Thyroid and tumour were removed, all tissue lymphnodes, glands. But it is still coming back even after Radio Active Iodene (May 08 for 4 days in isolation)?  Not one of the Proffessors in South Africa can believe that this cancer act in this way in a young child.  The surgeon wanted me to consider a Commando Operation as they removed the lymphnodes on the left from the back of the ear to the neck(45) and they have discovered that the cancer went into the nerves of the shoulders and that there are tumours stuck inbetween the nerves.  Could the cancer be mis-diagnosed? Is this normal? Two weeks prior the 3rd operation the scan had shown that the cancer is in lymphnodes left and right side of the neck.  Why is it growing at such a fast rate? The Oncologist suggested that we try Radio Active Iodene again, but increase the dosage from 80 mp to 180 - 200mp only in 6 weeks time (the wound needs to heal)  were is the cancer going to end up?  
7 Responses
Sort by: Helpful Oldest Newest
168348 tn?1379357075
Hello and Welcome to our Community!  I am so sorry you and your daughter are enduring this as you describe.  The follicular variant can be more aggressive as I understand, but I am not a medical professional; just a papillary microcarcima thyroid patient myself.

Please try to post your excellent ? on the Dr. Expert Forum.  Be patient and keep trying as the # of posts per day are limited. Dr. Lupo is excellent.

http://www.medhelp.org/forums/show/120

In the meantime, some other members who have had more aggressive treatments may be able to jump on in and lend a hand.

My best to you .. please let us know what Dr. Lupo says and give us updates.  We are here for you and your dauighter,

Cheryl
Helpful - 0
487969 tn?1249313291
Giving a bump for his woman and her dear daughter and wishing them all the best in their hard journey.  Can any community members chime in?
Helpful - 0
487969 tn?1249313291
bump
Helpful - 0
158939 tn?1274915197
This cancer is NOT acting like papillary/follicular carcinoma.  Is there a pathology department in the UK or US that they could send the slides to?  It is acting more like medullary carcinoma.   Papillary and follicular do not spread that quickly.

If it is medullary, all of the RAI in the world won't stop it - medullary doesn't take up iodine like follicular and papillary carcinoma do.

Surgery would be the next step - they need to get as much out as possible.
Here's some info:  http://www.endocrineweb.com/thyroidca.html

Your daughter needs a second opinion from a cancer hospital ASAP!!!

Oh, my thoughts are with you and your daughter.  I hope you can get the answers and treatment necessary.  My best to you and your daughter!!

Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma
Helpful - 0
168348 tn?1379357075
Utah,

Thank you for the link and helping our new member,

C~
Helpful - 0
Avatar universal
Thanks for all the help and advice.  I do not have an idea how to get the slides to the UK or US as I am from South Africa.  It is no use sending her for the Radio active iodene if it is going to be unsuccessful again.  I can't let her go for the operation it will leave her paralised what quality of life will she have?  WHAT DO I DO??
Helpful - 0
168348 tn?1379357075
You need the proper diagnosis and a team of highly specialized doctors.  Is there any way you can contact any world-reknown institutions here in the US .. I would send out e-mails by the truckload .. just copy and paste your post to them ... all it takes is one to take you under his/her wing ..............................

We have partnerships here at MedHelp with Johns Hopkins .. they are not Endocrinologists but look around and see if you can get any e-mail addresses or #'s or names or anything to help you ...... networking is key for you right now.

Please keep in touch and let us know what is happening .... we are here for you.

C~
Helpful - 0
Have an Answer?

You are reading content posted in the Thyroid Disorders Community

Top Thyroid Answerers
649848 tn?1534633700
FL
Avatar universal
MI
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.