Anyone have extrathyroidal extension? Stage 3?

Anyone else here stage III papillary?   Or have minimal extrathyroidal extension?   I am so upset -- I seem to be one of the few.   My tumor was only 1.3cm -- I only had symptoms (achy neck, increased GERD) for about 6 months prior to diagnosis and now I am stage 3!  

Everything I read says "most" people with papillary can be cured by surgery alone -- obviously I am not one of those.   I am so afraid that I will not be cured, but will recur and that the RAI won't get rid of it all.

My surgeon has said I will be fine.   My endo is more reserved and I just feel sick to my stomach all day long.....I am a breast cancer survivor on top of all this and having this diagnosis as well is really getting me down - in addition to going hypo for RAI.

I am also afraid of side effects from RAI since I am getting a big dose.  Anyone else stage 3 that has been given a good prognosis?  Not sure I have one and I am so sad....I should probably stop reading on the internet -- there is nothing positive about spread beyond the thyroid except to say that it is not good -- mine is minimal, but it is still depressing and scary to me....having a hard time dealing right now.

 

Based on everything I have heard and read staging with thyroid cancer is more relevant to the treatment course rather than prognosis. There are many people who were cured after stage 4 diagnosis.
do u mind if I ask how old u are?

Not at all -- I am 49 years old which I realize pushes me up a stage.   If I was 45 or under, I'd be stage II -- if you are correct, that it is primarily for treatment purposes versus prognosis, that would be great -- It's just that I have been reading lots of stuff on the internet that says recurrence is much higher and prognosis not so good for those over 45 with extrathyroidal extension.

It just upsets me because it was expected based on ultrasound done before surgery that I would have a small, contained tumor and would not need RAI.   Now I have a 1.3cm tumor (not too large) by spread outside the thryoid capsule and an involved surgincal margin.

My endo did say that I could still be cured....I am just really nervous right now as this is turning out to be more invovled than I originally expected.

Hello, I was diagnosed with stage 3 papillary in Dec of '06.  I had surgery where they removed my thyroid, one parathyroid and one lymph node. I then had one dose of radioactive iodine (capsule form of 100+/-) Then a year later they discovered another suspicious nodule in the front of my neck and a fna determined it was also cancerous.  During surgery they removed 22 lymph nodes from the front compartment of my neck which 11 of them were cancerous..  I never recieved another dose of RAI therapy yet and it's been over a year since my last surgery.  From the RAI therapy I got a small case of thrush but that was all.  The hardest thing has been how my body has handled the intrusion.  I have yet to have a stable TSH level and am constantly going in for bloodwork and a new med change.  I developed fibromyalgia like symptoms where my legs muscles and tendons  had severe cramping for over a year and a half and my parathyroids were a bit traumatized also and my calcium level nosedived (parathyroids control body's calcium distribution which controls nervous system) so if pain in jaws , watch your calcium levels!  Have recieved most info from this site to compare symptoms and now know I'm not nuts.  Am now on Armour meds and am hoping that this med will even things out.  They're watching  a lymph node on the left side of my neck now but it's real hard to tell sometimes what's cancerous and what's not until they actually go in.  Prognosis is still good even though they said mine is malignant and do periodic body scans too.  I work nights so my metabolism is already screwed up and am really disappointed that I don't even get the benefit of extreme weight loss from being hyper.  So hyper I'm exhausted all the time.  Keep asking questions untill you feel comfortable with the knowledge.  Unfortunately, we've all experienced a time when we feel that our MD's are downplaying our individual case and our worries.  Good luck! Cindy

what are your tg levels are like cindy?

Actually according to the recent guidelines if you were under 45 years, you would be stage1. the only thing that makes someone younger than 45 stage 2 is distant mets.

 

so think of it this way, you are a mere 4 years older than 45 and 45 is not a magic number. you are on the younger end of things and i would feel very confident that you can be cured.

 

how many lymph nodes were involved?

No lymph node involvement, but they didn't test a whole bunch -- but pathology report still say no lymph node metastatis, so I'll go with that --

I guess I still have to get through the whole body scan prior to RAI dose -- I am keeping my fingers crossed that not a lot shows up as residual stuff -- I already know there has to be a little in my neck since my surgical margin on one side was not clean.

But, yes, I have tried to convince myself that I am only slightly over the 45 mark and that line has to be somewhat arbitrary -- I have also read a few web sites that have upped that limit to 50 for women only.

Thanks for the support -- I really need it right now.  Physically I feel pretty good -- mentally I am a nervous wreck and sad.

Also, having been hypothryoid for 15 years prior to this, I am not as concerned about getting my thyroid levels in control -- they were in control before so I will think positively about that.    I have actually lost about 5 pounds already from stress and the low-iodine diet.

Yes I have it also.  I am 46 about to turn 47.  Had a TT in August 08.  Tumor was only.7cm but was completely intersected by my laryngeal nerve and had spread to 3 lymph nodes.  I had an RAI treatment in NOv of 08 of 129 mc. It was not that bad...just took me a while to get my energy back.

    Unfortunately my follow up in May of 09 shows a TG level of 13 and a stimulated level of 67.  I had a clean PET scan and  negative Thyrogen scan.  SOooooo,  tomorrow I am going HYPO for the first time and preparing for another RAI treatment and scan in AUgust. 

     Not knowing what this is going to feel like is daunting and scary.  I wish they could find something and clean me out, but its a mystery as to where the remaining cancer is hiding.

    I feel good and confident in my doctors..  I wish you the best and would welcome any question or experience going hypo that anyone wishes to share.  Peace to all.  Holly 

 

Hello Hopeful,

I know exactly how you feel.  I'm 46 and I too am a breast cancer survivor and my thyca diagnosis (3/24/09) was on the exact anniversary of my BC diagnosis 3/24/06 so it brought back all that baggage that I was trying to suppress for 3 years.  I too became extremely fearful, depressed, felt like I was losing my mind, and angry. "Why me? Why again?   I couldn't sleep and kept searching the internet for any information I could find (which makes things worse).  I was told there was only a 10% chance that my BC biopsy would be positive.  It was.  Then I was told there was only a 3% chance that my thyroid nodule would be cancerous, but it was.  So I felt like the unluckiest person in the world and I thought my body must be riddled with cancer and where else is it lurking?  And when will it strike next?  Feelings like this can really put you over the edge but I think they are mostly due to the fact that you are probably very hypo right now and fear of the unknown can really send your axiety level into the stratosphere. I had my TT on 5/6/09, my lymph nodes looked ok, but my pathology revealed Stage 3 Papillary with a tall cell variant which had already split and wrapped.  The tall cells are a more aggressive form and I was told that there is a chance of reoccurence with this type.  I did the LID, the RAI 125 mCi, on 6/17/09 and had a my WBS a week later and it was clean!    I'm looking forward to getting back to work as a pastry chef (part-time).  I'm still a bit hypo but working helps me not to dwell on my situation and I must say my whole outlook has changed since I had my WBS and it was clean.  Of course, I will have follow ups every 6 months and they wll be watching me very closely and I'm already trying to mentally prepare myself if it does return.  My doctor told me that will mean another surgery and possibly the RAI again (which is not good because so far, I still can't taste anything other than a salty metallic taste).  Try to hang in there, I certainly understand, it is not easy but you will get through this.  Please feel free to e-mail me offline anytime.

Atomicjoy

Tg 2/09 was .1 my recent T3 was 409. My Tg with Thyrogen injections has been only 12 to 16 but it was very low every time even before all the lymph nodes and thyroid out despite all the involvement. EWverything vcontradicts itself in my case......