Questions about Thyroidectomy/ Papillary thyroid cancer

[amyfboyer]

I was diagnosed with papillary thyroid cancer and scheduled for a complete thyroidectomy.During my surgery they are going to remove the affected lobe and biopsy it to confirm the papillary cancer then remove the other lobe. How accurate are the fine needle biopsy results? Could this possibly end up being one of the other types of thyroid cancer? Can you have more than one type of thyroid cancer? After the thyroidectomy is it common to gain weight? My thyroid levels have been normal besides having the cancer. Can the radioactive iodine make you sick when you take it? Do you have to remain isolated from family when you take radioactive iodine? Do you have to be hospitalized while taking the radioactive iodine. I am scared and any knowledge you can give me will be helpful.

[At The End of My Rope]

I have a questions I have noticed that the last several days on the side where my nodule is and my goiter that right under my chin I would maybe even say jaw it rights back into the ear area is this normal.and if i put my hand like under my chin and push it hurts.

[KathyD]

I once had a polyp too and it was benign.  Think alot of women get those and shouldnt be related.  When I went home, my husband gave me our bedroom and bathroom. Yes, you do have to be careful for about 5 days.  Just wash your clothes separetly, flush the toilet several times after you use it..same with the shower , must be cleaned etc after using.  My husband cooked the food and I ate on plates and uses throw away utensils and cups and plates.  We just kept a distance of atleast 3 feet at all times.  He used the kid's bathroom etc.  As long as you are careful there shouldnt really be any problem and its really just as a precaution.  I know that you shouldnt be near any babies or new moms for a longer period.  

[At The End of My Rope]

Thank you all so much for your postings. i meant with the surgeon on Tuesday i have questions written down. and I have it in my head and have i think accepted this can be cancer, but like i told my husband i think if and when i hear this from the surgeon or my END doctor it is going to hit me harder.

Thank you so much....

[ChitChatNine]

I find your outlook very normal and very healthy that you are looking @ ALL the aspects ahead of the surgery .... very knowledgable and aware of all the "what if's" which is fabulous.  I did not have the opportunity to process any of the Cancer diagnosis as my FNA was atypical and it was just awful to get a preliminary benign report and then be slam dunked 48hrs later with cancer findings if even very small.  Thankfully my ENT surgeon was wise enough to take lymph nodes for biopsy even though he didn't know of the other cancer findings.

When somebody has a Cancer DX there are 5 stages to process and, yes, you may feel like you were hit by a train and still have to process all your self-pity for loss of the thyroid and the why me, anger, etc., etc. until it is fully accepted and there is no timetable on when that happens.  For me it happened after the 2nd lump was found and I had to wait 7 days for biopsy on that thing ................ I suddenly accepted it all 1-2-3 like overnight so it is different for all of us but you have an edge .. you sound like you are right on track and doing well going into this!!!!

Cheryl

[amyfboyer]

To be honest I'm worried because I don't know that I feel any symptoms of any abnormality except that my neck is a little sore in the area of the nodule, and a gland on the left side of my neck above the nodule, but below my chin has been somewhat enlarged and sore since I had the biopsy. What scares me is if I feel good now and am asymptomatic I think after the surgery and no thyroid Im going to feel like I was hit by a train!! At some point after surgery or Before RAI will I not be at some point Hypo? I feel for all of you who have been hypo or hyper at some point or who are struggling with it! It just seems to me that I will feel such a shock to my system not quite knowing how it is to feel hypo. My sister mentioned that I just might not have associated anything that I may have felt with a thyroid disorder over the years. I am anxious to find out the results of the testing on my thyroid once it is removed-but at the same time scared knowing that the cancer has been confirmed. I think Im scared that it may be in my nodes or elsewhere. But there is no sense on dwelling at this point my day of surgery is getting closer!

[ChitChatNine]

Chronic constipation that happened out of the blue necessitating workup by a GI and on Miralax laxative for 2yrs now and guess what .. since TSH is not hypo anymore neither is my constipation .. I only need 1/2 dosage of laxative!!!

*  Weight Gain (25lbs in one year .. usually I lose weight when stressed, etc.)

*  Dry Skin (out of the blue I became very dry skinned that my Dermatologist noticed it while removing a skin mole and he knows me 8yrs)

*  Muscle Pain .. and some cramps .. out of the blue along with other symptoms that occured overnight

The real clincher was after the surgery when my TSH went up to 3.9 I didn't know that was the case and was complaining of the worsening constipation ... then we all knew the thyroid was the reason.  I had a colonosocopy 2yrs ago that did reveal an atypical benign polyp so I'm due again this month for 2yr followup for which I will tend to during the summer .. wouldn't be so great to have Colon Cancer from negligence when I'm licking they thy stuff right ?

C~

[At The End of My Rope]

What was your suggestion

[ChitChatNine]

I, too, was at routine phys. exam when he found my nodules!  I had normal bloodwork, too, with suggestive hypo symptoms but nobody ever ck'd beyond my lymph nodes when in for sore throat, etc, etc. @ my old Dr.  This was a new Dr.I switched to for a new primary Dr., and he was the one who found this!  My old group was getting too big for itself and very HMO-like with no personal touch at all so I had switched.

C~

[At The End of My Rope]

Thank you everyone for writing your experience I think listening to all the different experiences helps us understand things. I told my husband you know this is bothering being in and you can live without the thyroid so if taking it out is going to help me feel better and give peace of mind that it is all worth it to me. I can only pray that the FNA was correct and that when they do the surgery the findings are the same. Now, if I understand correctly if you have non-cancerous thyroid you do not have to go with the RAI treatment is this correct.

Thank you again everyone

God Bless You All

[amyfboyer]

How long were you isolated from your husband after the 3 days in the hospitol?
How long was the isolation period? Just curious cause I was wondering what I may be looking at for time off of work. I just started a new job and all of this is just terrible timing as I don't have any earned time off or FMLA. Thank heavens it is in a hospitol and everyone on  my unit is very supportive and told me my health is more important right now. How much worse is the situation if they find the cancer in a node?  Does this complicate things even more? Im really worried now cause my gyno. also told me that after my thyroid surgery I will need to have tests done on my uterus because they found a fibroid cyst on my uterus and a polyp inside my uterus (by ultrasound) Im just wondering if any of this could be related?  He seems to think they are probably benign but I don't think he wanted to overwhelm me after just finding out about the thyroid cancer!

[amyfboyer]

My nodule is a cold nodule 1.5cm on my left lobe. The papillary cancer was confirmed from the fine needle biopsy. I go for the TT on May 10th. Some interesting facts for all of you- my sister was actually being seen first for 3 nodules that they found, plus her thyroid levels are fluctuating and her antibodies are up they are looking at the Hashimotos possibly for her, although she does go in for a biopsy for the one nodule which the scan shows as being cold. Our family gyn. was doing all of the work up for her and because we have thyroid problems on our maternal and paternal side suggested that I also remind him to check me when I went in (a week later) My family doctor has been doing thyroid blood work on me for years and my thyroid blood work always has come back normal. But then I see the gyno. he palpitates my thyroid and finds a solitary nodule on the left side! Next thing you know Im going for an ultrasound and scan which confirmed the nodule as cold and ultrasound found it suspicious looking. Next the biopsy which confirmed papillary carcinoma! My family doctor felt terrible that he hadn't found it first, but being that my thyroid bloodwork was always normal he felt no need for further testing and never actually palpitated my thyroid to look for nodules. My sister and I are convinced all of this with her happened for a reason- who knows how long till I would have been diagnosed!! My mother also went and got scanned and an ultrasound they found 4 nodules on her!! All of which are non threatening (they say).

[At The End of My Rope]

Thanks Kathy, Now when you came home could you go on like normal, i guess my worry is a have a step-daughter that visits every other weekend and i have only been married for a 1 1/2 years so I still enjoy my husbands company. lol.... I am worried about work and etc....Did your test show it was cancer before hand or non-cancer i cannot remember what it said....I am just so under certain about all this i go to the surgeon next tuesday.

[KathyD]

the isolation wasnt really that bad.  I had a tv to watch 24/7...the nurses came in quite often.  They can only spend 30 minutes of time with you over a 12 hr period but you really dont need anything except for alot to drink to get it out of your system. I drank alot of water....and showered often and sucked on lemon drops...tho I should have snuck in some GOOD FOOD :)  My husband was allowed to come see me for a max of 30 minutes and after the first day....I only let him stay just a few.  It's really not as bad as you think at all.  Just bring puzzle word books etc.  You really look forward to breakfast, lunch and dinner lol.  I liked that the nurses were not checking my temp or blood pressure or waking me up in the middle of the night like normal at a hospt.  The quietness was actually really nice.  And they were all very accomodating.
It was worth knowing that I will have nothing to worry about....believe me peace of mind is EVERYTHING>

[At The End of My Rope]

Thank you for the information..I hope that it does not come to this after I visit the doctor next week

[venora]

I m not Kathy but I have veen through RAI and you have to be isolated after you take the pill to avoid exposing others to raidation.Its only for a few days and I myself enjoyed the time to myself.(There are 6 other people at my house.)
Its not so bad .I am thankful thyca survivors dont have to go through chemo
Hnag in there.
Love Venora

[At The End of My Rope]

Kathy:
Is it normal to be isolated when having RAI that is what I am worried about not being able to be around my family. My FNA shows suggestion of hyperplastic nodule however the amount of follicular epithelium there is some obsurring of nuclear deatil by airdrying effect so my doctor thinks having the thyroid removed is the answer to be certain no malignancy. I have enlarged thryoid (Goiter) along with a nodule on the right thyroid which started at less than a cm and is now 2.59cm.

[KathyD]

I had a 2cm cold nodule on my left lobe.  I had a biopsy came back undeterminable.  Had a lobectomy  on 2/7 and results came back papillary cancer. One lymph node was removed and it was fine. I was put on 112 of synthroid until i  had a TT on 3/21 and they removed the rest of my thyroid.  I tried taking cytomel before the RAI but it made me sick so I took NOTHING until April 11th and had my RAI in the hospital I believe 103mg ...had to be kept in isolation for 3 days and was sent home. I had to stay in a separate bedroom from my husband and used our master and master bath :)  I felt perfectly fine in the hospital never noticed anything.  Though I hated the low iodine diet they put me on.  Some doctors put you on one prior to the RAI but mine didn't.  However, I was careful just before the RAI anyway.  I just had a full body scan yesterday and my doctor said I could start taking my synthroid today which I gladly started again.  The only thing that bothered me for the most part was the major fatigue.  I did take an antidepressant for a few weeks but I have gained 15 pounds since my first lobectomy and I do believe it was related to the antideprss med's.  I will finally have my energy back getting back on the synthroid tho so should start doing better.  I am glad I did everything I have done because now I have no more worried.  The cancer is out.....and I am fine and its very curable.  If you have to have any cancer this is the one!!!  Take things slowly......I found this website to be such a relief so much information and everyone is so  supportive!!!  It's a lifesaver.  :)  You will be just fine!!!!  I've been there done that and a survivor!!!!

[venora]

I dont trust FNA I had one that was clean then when I had the TT for goiter they found the pap cancer.Its the only way to be sure  to get it out.I know that isnt encouraging but I just dont think that FNA"S are very conclusive.
Love Venora

[Justicemom]

I can't answer your cancer questions, but I had my TT on 2/14/07 for a multinodular goiter and I haven't gained any weight after the surgery...It was the 18 months before the surgery that I packed on the weight from the funky thyroid.

[ChitChatNine]

I had a partial jan 07 for 2 suspicious Follicular nodules that turned out benign during frozen biopsy and final biopsy; however, they found 2 smaller areas of Pap ThyCa upon final biopsy elsewhere in the gland.  They are microcarinomas and fullly encapsulated with no lymph node involvement so I have chosen to monitor the heck out of the other side w/ ultrasounds ev. 6 mos and on Synthroid for total supression but turns out the other side isn't working anyway so would be on Synthroid and who knows if it has been working b4 the surgery as I had hypo symptoms subclinical for 2 yrs now!!!!!

I don't have answers to your other ?'s but wanted to share my story with you.

Cheryl  (pap thyca Synthroid .88mcgs .. TSH 1.8 goal is 0.5-1.0)