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papillary cancer thyriod

Hi I am new to this fourm but her I go my wife was currently dignosed with papillary thyroid cancer and we are waiting for a meet and consult appt. with the surgen. We were told by the thyroid specialist that she needed to have all her thyroid removed. My question is how confident should we be with the pathologist report and can the biopsy be wrong? I did ask the specilaist if we could do another biopsy and he replied it would not be necessary because the first was enough for him and he felt she 100% had cancer!  
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793305 tn?1493925518
Sorry I did not come back to you sooner.  I have not been out for awhile.  The dr's don't want you on thyroid medicine if you need to do the RAI.  I don't know how to say this and some of the other folks out here will do a better job, but they want your body to be very reactive.  Your thyroid is the only thing in your body that hangs on to iodine.  So when they give the RAI it looks for anything in your body that has iodine and attacks it...kill the iodine and you are killing the stuff left over from your thyroid...they don't get every microscopic bit in the surgery...so the Radio Active Iodine (RAI) goes on the prowl for anything that's left and kills it.  That makes it less likely that cancer from the thyroid can appear anywhere else in the body.  I have had two scans and will have another in May.  I know you'd like for this to be over, hon....But nothing in thyroid land happens quickly.  Once they get her on her meds, she will eventually feel better.  It took me 6 months to get my blood levels right...Some folks take up to a year...But she won't feel like she does now...there will be small improvements every day, every week, every month.  The contant ups and downs should go away and she will just be building up, I hope.  I am one year out from my TT.  I am feeling pretty awesome.  I go to the gym.  I walk, I laugh, I am planning my daughters wedding.  : )  Even now, I still get cold at the strangest moments and I have days when I feel less awesome....But compared to before TT, I am doing great...
Looking forward to hearing the same from you folks.  Baby steps my friend.  Eventually you'll be running, but for right now...baby steps.  Just take every moment as they come...don't worry about things too far ahead...just take each day as it comes.
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Avatar universal
Well the endo is waitng for a room at the hostial for her RAI. I asked if it was absolutely necessay and he replied yes. So a asked if there was any cancer left and he was not sure but was not happy with the Tg level of 8.1 and felt very confident that to play it safe he would recommend RAI so she is trying to  get her mind and body ready for it. I asked when should she start her low iodine diet and he relied that it was not necessay because her TSH level was on 04/07/10, 70.1 and by the time the RAI would be given it would be much lower. What do you think about all this?
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158939 tn?1274915197
Wait until you talk to the endo - he may have her going hypo to test her Tg levels or because he wants to be able to do RAI if you all agree on it.

To send a private message, hover your mouse over the person's name which should be highlighted in blue.  Soon you will see a pop-up box next to your mouse and you can choose to "leave a note" (which everyone can see on their page), "send a message" (which is private), or "add as a friend".

Take care and, if you decide to put the endo in a headlock, make sure there are no witnesses.  :-)

Utah
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Avatar universal
HI I hope you are doing fine. My wifa is going through hypo hell I can not understand why the endo is having her go through this. last appt. we had with him he stated that the pathologist report came back clean no cancer of the parathyroid tissue and sliced thyroid except for the 2.5mm nodule that had the cancer and there might not be need for the RAI. This is good news, my wife's primay care dr. called her the other day and was worried that her tsh level was 70.1 and sent her a perscrition for hormoe meds. We have an appt. with the endo on 04/09/10 and will voice all my concerns and I might get him in a head lock Ha Ha. wish us luck. Question should I pick up the meds and start her on the hormones or wait.???

p.s. I have been sending messages and have not been getting replies, can you show me what I am doing wrong. I am a rookie!!!!      
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158939 tn?1274915197
Many of us have had thyroid cancer and not needed RAI.  However, with the size of your wife's thyroid and it being stage 2, RAI *might* be indicated.

What the endo needs to do, if they aren't preparing her for RAI right now, is draw a thyroglobulin (Tg) level now to establish a baseline.  From this reading they need to check the Tg every 3 months and see if the level stays the same (good), goes down (wonderful!), or rises (not good).  An increasing level of Tg shows that the cancer has returned and it's time for RAI.

My best to you and your wife
Utahmomma - papillary carcinoma '03, second surgery '04, recurrence and RAI '06
three sisters with papillary carcinoma (one with three recurrences/RAI -- two have never needed RAI)
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Avatar universal
Hi, I hope you are feeling better? I try to navigate in this site but I am still learning. I send messages and do not get responses, I think I am doing it wrong, well I will try again! Just an update. The wifa had her TT and is recovering and is feeling the symptoms of Hypo hell. My question is why do Endos have pts. level out so low, because I took her to emergancy due to mean shaking of her hands and her calcium was 84 and her hormone level was 70.1. There is some hope the pathologist report came back good no cancer in the parathriod tissue and Lympnodes. The Thyroid was sliced and the surounding tissue had no cancer only the 2.5mm solid nodule had stage2 papillary carcinoma. The Endo stated " she might not need RAI". we are hopefull that this remains true. Question have you every heard of anyone not needing RAI after a TT?  
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Avatar universal
Hi, I have a question, why do Endos wait so long to start pts. with a TT on hormone therepy?
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Avatar universal
Hi, I have a question, why do Endos wait so long to start pts. with a TT on hormone therepy?
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Avatar universal
Hi, I have a question, why do Endos wait so long to start pts. with a TT on hormone therepy?
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Avatar universal
Fyi she had her TT on 03/19/10 and she is feeling real tired all the time. She also is feeling symptoms of tingling in her hands, feet and pain on her right knee. When removing the thyroid they moved the parathyroid glands from both sides and DID NOT REMOVE them. The Endo gave use some encouring words " You might not need  the RAI treatment because the pathologist reports that all the cancer was removed". this is great news but the wifa does not seem to be exited about it. She is on 3x 1,000mg of calcium a day. My question is were you feeling like this and if so did you try vit. D?

Titi55 ;]
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Avatar universal
Thank you for all these kind and inspirational words. 4, 2 and 1/2 years she has gone through so many other surgeries that I hope she comes out of this one like the great friend,wife, person, mother,grandmother that she is right NOW!!

Tito55 ;[
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793305 tn?1493925518
You are asking all of the right questions...there's no such thing as a dumb one especially in these circumstances.  I had TT last March.  I had papillary cancer in two places and so the whole thing came out.  
My blood work leveled out in October and within a couple of weeks after that, that's when I could begin to tell that I was feeling better.  Today is a great day and I look forward to many more of these.  
One last thing.  Please understand that yes this is cancer and it is very scary, but this is soooo treatable.  It may take some time to get everything back and her normal may be a new normal, but she'll get there and it sounds like she has a great supporter in you.  My husband has been awesome for me as well and that only makes life better.  There may be some moments when she gets really cold and just extremely wiped out.  Keep blankets nearby and be ready to cuddle.  Something hot to drink always helps me.  
The RAI has it's difficulties, but it is doable...It's just for a couple of days.  You'll have to spend some time completely apart and then you can watch a movie together, but no more than that and on day 4 you should be ok to be back together.  Dr's will go into this more.  
I told everyone that I felt like I was walking around with a mushroom cloud over my head...Or that plants were dying as I was walking by...One girl said she was thinking green gue would come out of her ears.  The cartoons I could come up with LOL...but those things were not happening.  If you have a dog or small children they will have to be kept away as their thyroids are very susceptible to this type of radiation.  But again it is just for a few days.  Good luck to you both.  Keep your chin up.  Just move forward. Take one step at a time.  Always forward.  : )
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Avatar universal
Nope, no geiger, do you need one???  LOL! Sorry I didn't answer sooner...I do take vitamins, just plain ole multi vitamins. Sometimes when I am really tired, I take a product called EmergenC, which is a vitamin B supplement with extra calcim. I did drink a lot of iced tea, too.  Watch out for soy, that will interfere with thyroid meds.   Also, tell her to drink lots of water and suck on sour candy the day she gets dosed (RAI).  The water will flush the iodine out of her system, the sour candy will stimulate her saliva glands so they will not plug up.  I am on Levothyroixin, too...I started out on .150mcg, then was upped to .175 mcg, and then upped to .1875.  Good luck to you both, I will add you to my prayers, also.
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Avatar universal
Happy Monday to you. I wll make it quick, do you have a Geiger counter and if so do you mine selling it to me?  
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Avatar universal
iMuchas Gracias! My wife was told that she will be taking L-thryoxine,is this the same as synthroid and were you put on calcuim supplements? I have added your mane to my prayers. Do you take any vitamins and if so which ones have you noticed that are real helpful. One last question the numbers you mentioned are these in mg. or grams. You have been so good to me and my wifa she reads all your responeses and truly appreciates them!

                                               Tito55
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Avatar universal
The day after RAI I took synthroid, and 20 minutes later it felt like a sudden adrenaline rush.  I felt better the next day, however, I didn't really get back to normal for about 4-5 months.  They have to start slow, then increase as needed, in my case I started on .150, then upped to .175, now I am at .1875.  I will be re-evaluated next week. She must always take the synthroid on an empty stomach, 1 hour before or 3 hours after any food.  I take mine in the middle of the night when I get up to use the bathroom.   She will want her TSH to be .01 or under...there is no thyroid, no use producing stimulating hormone for something that is no longer there.  Also, that is where the cancer was, they don't want anything there stimulated.  They will keep an eye on her thyroglobulin, that will tell the docs if the cancer recurs, but this type of cancer is nearly 100% curable.  Anything more I can do, just ask.
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Avatar universal
Hi hope you are doing fine I am so tired but can you read the other emails and repsoned. Thx

                                      Tito ;[
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Avatar universal
Thank You. We were told by the Thyroid specalist that depending on by wife's recovery ( due to her previous surgeries), he will wiat and see but should not be more then 5 weeks. After she starts her meds how long after did you level out (Sorry, but I do not know any other words to use)  and how are you doing now?  
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Avatar universal
They will make her wait for a few weeks depending on the Doctor and without any replacement hormone.  The thyroid tissue left behind will be "hungry" and suck up all the RAI.  I waited 7 weeks, my sister only waited 3 weeks.  My doc was on vacation the 6th week so I waited 7.  She will get very hypo, by the 4th week it really starts getting bad, then after that miserable.  But it is only temporary.
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Avatar universal
Thank you for your kind words. She will haver her surgery on Friday 03/19/10 for a total  thyriodectomey. Question after your surgery did you immediately have Iodine Radiation?
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Avatar universal
TITO55, take heart, I have been there...they did not get any cancer cells on my biopsy, the result was "benign follicular clusters", but I still had cancer.  They are most often not sure, unless as in your wife's case they "struck gold" on the biopsy.  At least she knows....I went through several months of struggle.  I had to make a decision to remove 1/2 of the thyroid due to symptoms of hoarseness, but then they found the cancer, hence another surgery.  At least she will only have one surgery.  By the way, if she has sisters and brothers, they should get tested...I made my sisters(2) get checked...my older sister found the cancer on her biopsy, my younger sister has nodules and is being watched, two of my bros have hashimotos, as did my dad.  RAI is not so bad, the weeks prior are hard, they don't give her any meds, so she will get very hypo...she will sleep a lot, be cold, snore loudly (sorry!), have brain fog, inability to think straight, clumsiness...it is not fun.  As soon as they give the RAI, she will be radioactive, do not be around her for two days or so, or be very careful, she will radiate.  After the third day you will be able to be in the same room, but stay 6 feet away for any length of time.  You will need to sleep in another bed for a week.  You can find all the information you need at Thyca.org.  That is the thyroid cancer website, they have all the info you need to get through it.  Good luck!
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Avatar universal
HI, hope you are doing fine. Well we spent all weekend working on questions to ask the Surgeon and we compiled 4 pages. It might be much but we need to KNOW! I have heard that the Iodine Radiation is tough? Did you have it and if so what did you do to prepare????

                               TITO55 ;{
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Avatar universal
Hi I hope this email finds you well. Today we have a meet and consult with the surgeon and we have prepared 4 pages of questions. wish use luck.
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Avatar universal
Thank You for your help I just had an email from Dr. Lupo and the odds of them being wrong was less then 1% and even then it might still have to be removed. They Pulled three masses and made serveral slides and all were positve. Wish us luck because WE am really going to need it!!!!!!!!!


God bles you, TITO:[
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