Papillary Microcarcinoma

Seen endro yesterday following my TT on the 29th of August, my husband met me there, I thanked him.

Endro called for pathology results got a verbal and request fax...

He said there were 2 foci of papillary microcarcinoma on the right lobe and 1 focus on the left, he talked to the surgeon and he said visually he didn't see anything on the lymphnodes.

Endro was very patient with me and had to explain things a couple of times to both of us, me more I was a little numb. 

The game plan as far as I understand is to get bloodwork done this coming Monday(have copies sent to Endro, surgeon, Hemo, and Primary care Dr's.) and see surgeon as scheduled for follow-up to TT.  Endro wrote tis for me.........

  6 weeks---Thyrogen Stimulation x2 days then (@#$%)(can't make it out) Thyroglobulin after 3 days and recieve 100TMC 131 and repeat scan 5 days later (and he said I forgot the write ultrasound.)

I understand I have some things to do here it's just not black and white enough for me I need a schedule time and description of what is happening at that time.  Maybe it is black and white already but it's not sinking in.  

My husband asked me as we walked out of the Endro office what was wrong with me, your ok they already cut it out.  I am worried. About what this is all for assurance.  Then later last night he said worring dosen't look good on you let me do it, I hide it better.

 

Okay, I'm currently going through this myself.  It sounds pretty good.  You have small foci but it sounds multifocal as it is on both sides with no obvious lymph node involvement.  They are probably setting you up for radiation ablation therapy or RAI 1311.  There are different ways to approach this.  If you are currently on thyroid hormone depending whether synthroid, levoxyl or cytomel, they will take you off your hormone.  Synthroid and levoxyl take about 6 weeks to leave your system.  Cytomel only takes 2 weeks or they may use a new injection that will raise your levels of TSH to where it needs to be in about 2 days.  If you are on any of the thyroid medications you will go hypothyroid.  I was on Cytomel and did well during this period, some have symptoms of being hypo.  You may have to be on a restricted diet (low iodine diet) for about a week or so.  This is all in preparation to starve any remaining thyroid tissue.  Once you have accomplished this they will prepare you for a prescan to see how much if any thyroid tissue remains and based on all these factors determine a dosage for the RAI 1311.  I had a dose of approx. 125 milicuries but I had a more aggressive form and lymph and extrathyroidal involvement so I would suspect yours should be in the 33 to 50 some range but there are differing opinions out there.  You don't want to expose yourself to more than is necessary to treat your disease.  I had my treatment yesterday and now in my radioactive period so I can't be in close contact with anyone for about a week, more stringent during the first few days.  From what you have indicated about the pathology of your thyroid cancer you should do very well.  Hope this helps you to understand a little better.  I know it is very confusing.

 

On 9/12/2007 Leemg wrote:

Okay, I'm currently going through this myself.  It sounds pretty good.  You have small foci but it sounds multifocal as it is on both sides with no obvious lymph node involvement.  They are probably setting you up for radiation ablation therapy or RAI 1311.  There are different ways to approach this.  If you are currently on thyroid hormone depending whether synthroid, levoxyl or cytomel, they will take you off your hormone.  Synthroid and levoxyl take about 6 weeks to leave your system.  Cytomel only takes 2 weeks or they may use a new injection that will raise your levels of TSH to where it needs to be in about 2 days.  If you are on any of the thyroid medications you will go hypothyroid.  I was on Cytomel and did well during this period, some have symptoms of being hypo.  You may have to be on a restricted diet (low iodine diet) for about a week or so.  This is all in preparation to starve any remaining thyroid tissue.  Once you have accomplished this they will prepare you for a prescan to see how much if any thyroid tissue remains and based on all these factors determine a dosage for the RAI 1311.  I had a dose of approx. 125 milicuries but I had a more aggressive form and lymph and extrathyroidal involvement so I would suspect yours should be in the 33 to 50 some range but there are differing opinions out there.  You don't want to expose yourself to more than is necessary to treat your disease.  I had my treatment yesterday and now in my radioactive period so I can't be in close contact with anyone for about a week, more stringent during the first few days.  From what you have indicated about the pathology of your thyroid cancer you should do very well.  Hope this helps you to understand a little better.  I know it is very confusing.

Thank-you very much that was very well written.

I am on cytomel, the surgeon prescribed 25 at the hospital, the endro increased it yesterday to twice a day, he said my reflexes were too slow.

He also said there is a possiblity that I won't go off the med, something they have been doing at Penn State???

My endro mentioned that he was going to use 100 millcuries.  I wonder that may not be set in stone, it may change after the labs are done.

Is this your first/only treatment?

I hope that all goes well and thank-you again for the wonderful response.

I want to understand as much as possible and be able to talk about it as if I wrote the book, before I tell my family.

 

Thanks!  This is my first treatment.  The variant that I have which takes in about 75% of my thyroid cancer may or may not respond to RAI so it is a test as well.  I also have about 25% common papillary which has an excellent response rate to RAI so pending on how much activity develops (which shows where it is working) will depend if they can use this again or if I will have to relay on other diagnostic measures.  I go back next Tuesday and should have an idea after the postscan is done.  They know I have a positive lymph node in the level 3 region of my neck so if there is no uptake in that area than back to surgery to deal with that.  If there is some activity they will do an ultrasound in about 3 or 4 months to see if it is actually shrinking or not.  Again good luck!

Dear Homesick,

                       If the lymph nodes are negative, then your chance of recurrence and cancer-specific mortality rates of papillary microcarcinomas are near zero.

This is the best possible news that one can get with a diagnosis of thyroid cancer.

Microcarcinomas (Papillary) are less than 1 cm. in size, and not readily apparent to the doctor. Usually found during surgery on the thyroid for some other reason.

The radiation is the standard treatment and will destroy any remaining thyroid tissue that may still remain after your surgery.

Hope this helps.

Tracker65 

 

On 9/14/2007 tracker65 wrote:

Dear Homesick,

                       If the lymph nodes are negative, then your chance of recurrence and cancer-specific mortality rates of papillary microcarcinomas are near zero.

This is the best possible news that one can get with a diagnosis of thyroid cancer.

Microcarcinomas (Papillary) are less than 1 cm. in size, and not readily apparent to the doctor. Usually found during surgery on the thyroid for some other reason.

The radiation is the standard treatment and will destroy any remaining thyroid tissue that may still remain after your surgery.

Hope this helps.

Tracker65 

Tracker65,

Thank-you for your info, it is well excepted.

  I am 50 years old female and had a Multi nodule thyroid(both sides), with hyperthyroid symptoms and TSH<0.01 (no weight loss tho), which the endro was concerned with finding the cancer there.  This wakes me worry, why was he stating his concerns and pointing out those factors....... ........I have Factor V Leiden and Antithrombin lll Deficiency, should I be concerned that any of the new drugs and/or preceedures will effect my clotting disorders or INR levels. 

Is there anyone else that is the same boat?

 

Worry to much.....

Homesick