Surgery set for me

Hello all, I am a 38 y/o male that is about to be going under the knife next week for a possible TT for a "suspecious" Papilliary cancer it's approx 1.1 cm on the left side.  My labs were all normal.  What should I expect starting when I wake up after the surgery?  I have not been started on anything at all.  Really nervous about all this happening to me.  It was an accidental finding. Lucky me!!!  I see my surgeon on Monday 1/8/06 for the preop and then the surgery is 1/11/06.  How long does folks with uncomplicated Thyroid surgeries usually stay in the Hospital? What will happen post op?  Just want to hear it from surviviors of this instead of the Doctor.  Thanks for the support!  Scott

[utahmomma]

Scott,

Welcome to the club!

Question:  how do you know it is papillary carcinoma?  Did you have a FNA to determine that?  Most of us don't get that diagnosis until after the thyroid has been removed and biopsied in the OR.

What to expect:  Most of us stay in the hospital overnight which is usually considered a "same day" surgery.  For your surgery you will be intubated so ensure the airway stays open during the surgery (which may cause a sore throat after your surgery).  Most of our surgeries takes between 1 1/2 to 3 hours depending on how much the thyroid is "stuck" to the nerves, blood supplies, and parathyroid glands.  You will usually have an IV through the night which is a good thing for the pain meds and in case you need calcium.

Watch for cramping or tingling after the surgery.  Parathyroid glands are very picky and if they are damaged or just inconvenienced sometimes they will throw a fit and cause problems with your calcium.  If you feel cramping or tingling notify the medical staff IMMEDIATELY and tell them to check your calcium levels.  This is not an uncommon problem after thyroid surgery.

You will be sent home with a bandage on the lower part of your neck which will have steri-strips or sutures under it.  Follow your doctor's advice on how to treat your surgical site.  Most of us just have to ensure the site is dried well after showering (using a blow drier on low heat works well).  Your surgeon will have you come in for a follow up appointment a week to two weeks after the surgery to check the surgical site.  After the stitches or steri-strips are removed you can apply moisturizer to the scar to keep it soft and prevent cracking.  Some swear by their OTC or Rx scar creams, personally I loved pure Aloe Vera gel.

If you have a complete TT, you will be placed on thyroid replacement medications.  The starting dosage will depend on your weight - many of us start out around 100mcg to 150mcg.  Your medications will probably have to me adjusted gradually over the next year to two years.  If you don't feel well on your medication, tell your doctor (hopefully you have an endocrinologist).  Some of us are very sensitive to certain brands of thyroid medication and will have to try more than one until we find the right one.  Your doctor will conduct blood tests on you to check for proper levels.

If it is determined that you do in fact have thyroid cancer you can plan on having a certain type of radiation that target thyroid tissue.  Thyroid tissue absorbs iodine so the treatment to kill of any remaining thyroid tissue involved irradiated iodine.  Thyroid tissue cannot be 100% surgically removed because of the danger of nerve damage.  This is commonly known to the medical profession as I-131 (iodine 131) but is more commonly known here as RAI.  This is actually like radiation and chemotherapy all at once.  For this you will be taken off your thyroid medication and put on a special diet so any remaining thyroid tissue is starved for iodine.  Once you have reached a specific lab-tested thyroid level, you will be given either a pill or liquid to take that contained irradiated iodine.  You will have a small dose to scan for how much your uptake is then you will be given a very large dose (I refer to it as the Chernobyl level).  After this you will be isolated for a few days (you will be so radioactive that you can contaminate others and harm their thyroids) then scanned to see where the tissue was remaining.

See, piece of cake, right?  :-)  Actually I probably just scared the heck out of you but, if it is papillary carcinoma, it is one of the easiest to treat and most curable cancers you could have.

Oh, as a bonus, you will also be given a special membership reserved just for those of us who have a great little scar on your necks.

So many of us here have been through it, ask all the questions you want to.  I've been through it and so have three of my sisters - it's the easiest surgery any of us have experienced.

Sorry to type so much, I'm just a bit hyperthyroid right now so a bit hyper.  :-)  Welcome to the gang!  Give us more about your background and condition!!!

[MJ13]

Scott,

Well to the club!!! I had a TT on 13 Dec for papillary cancer (8mm tumor with Graves disease).  You can read about my surgery if you scroll down to "MJ13's surgery .. Has anybody heard from her" which was posted 17 Dec.  This website is very informative on what others have been through with their thyroid disorders to include surgeries & RAI.  I'm sure you have a million questions that your doctors haven't answered...so ask away.  We're all here to support each other.

[utahmomma]

Scott,

If you are like the rest of us you may be acting very nonchalant about this entire thing while freaking out inside.  It's not easy to get information about thyroid cancer, especially from doctors, so here is some useful reading information to look at when you can't sleep.

http://www.endocrineweb.com/thyroidca.html
http://www.cancer.gov/cancer_information/cancer_type/thyroid
http://www.answers.com/topic/thyroid-cancer
http://www.webmd.com/hw/cancer/ncicdr0000062709-stage-explanation.asp
http://www.cancerlinksusa.com/thyroid/index.asp
http://www.cancer.gov/cancerinfo/wyntk/thyroid
http://www.cumc.columbia.edu/dept/thyroid/
http://www.thyca.org/
http://www.checkyourneck.com/

I wish I would have known more about my condition before surgery so if you want info, please feel free to look through the links and ask questions!  Don't panic, this is very doable and you have TONS of support on this site.  

KEEP US POSTED - it's the unwritten law of this site!  :-)  
We may all be going through tough times but it makes us all feel better to talk about it and support each other. Hang in there - wer are here for you.

[venora]

Hi Scott this is a very exclusive club and you have to be real special to join.LOL Everyone here is so wonderful and supportive.
I had my goiter out in September.I found this board after they found my little cancer in the goiter.
So keep us posted on your progress.I will say prayer for your surgery to go well.
Lovev Venora

[Lightsmsb]

Hello all, thanks for the information.  Yes I am freaking out in the inside trying to keep my composure on the outside especially for my 2 kids (9 & 12).  I found out I had a "suspecious" papilliary thru FNA.  I had an ultrasound and MRI.  I do not have anyother medical issues except this now.  They actually found my nodule by accident when I was going thru another battery of test for my eye (that is another story!!!) and when they ultrasounded my carotids is when they found the little bugger.  All my blood tests are normal!  

Just reading everything I was only reading cancer patients of women and with gloters and hashimotos.  I was concerned I was the only male with normal test results beside this papillary stuff.  I saw an endo and 3 other surgeons (2 Navy ENT surgeons and 1 Civilian ENT)  We decided to go with the civilian surgeon becuase he was able to answer our questions and we didnt have to drive 300 miles to get this taken care of thru the Military (since I am in the Navy too).  Iam a hospital Corpsman and I used to work in Anesthesia so I know what to expect there and know how surgeries happen in th OR however, I never saw a thyroid surgery so this is unknown to me.

Question, does our diet have to change without a thryoid? (  meaning since the thyroid cannot filter the iodine(since it's gone) do we have to limit or take away these kinds of food?  I really love seaweed, have to drink soy milk if I want to eat breakfast cereal or my wife's homemade icecream, etc..  Is that why there are tons of low iodine cookbooks I see on the internet?  I understand if I have to go thru the I131 treatment I have to limit this for a positive test results, but when I am not going thru that what is life like for eating??  I am apprx 187lbs.

The surgeon told me he will do a frozen biopsy on the left lobe to get a initial report and that result will determine if the other side comes out.  Mine is only 1.1cm and the MRI results stated that no lymph activity for this size criteria.  The surgeon was happy with this report but told me he will know better once he sees the area.

Also what is this thing I see about hair loss?  I am not really concerned about hairloss right now especially that I am in the Navy and already have short hair!  hahaha

Thanks again!  I am sure I will have more questions! :)

[ChitChatNine]

I will be thinking of you.  My surgery is on the 9th.  "Atypical" FNA for follicular cancer found in a 1.7cm nodule found quite by routine physical.  I hope you only have good news (mine, too, will do frozen section).  Glad you found a surgeon you are happy with.  I interviewed 4 professionals (2 ENT's, 1 Endo, and my Primary Care Physician) and all agreed 1/2 must come out.

Cheryl

[Mumzilla]

Scott, welcome to our little group.  I had TT on Dec6, 2006.  My nodules were found by accident, after bi-lateral pnemonia (pneumonia).  The surgery made me a bid nervous, but let me tell ya,  I had my tonsils removed 3 years ago, and recovery from thyroid surgery was a piece of cake compared to a tonsillectomy.  Keep good thoughts, find put all the info you can, and educate yourself. The best weapon we have against this is knowledge. Prayers are with you....Mum

[malawi]

Scott
Im a 44 year old male and just had a TT for stage 1 follicular cancer on dec 12th.Also had RAI treatment on dec 27th and have my body scan on monday the 8th.Mine was a 2.8 cm lump that i noticed while shaving.My surgery went very well and the tumor came out easily and had not gone to any lymphnodes.Pap and follicular are very treatable and about the same as cure rate.A very good book that helped me was thyroid for dummies by dr rubin it really put things into perspective.Basically people at my level and age of cancer 100% of them were still alive and healthy 15 years later.Of course there are few certanties in life but as i said it sure puts it into perspective...that with all the good info on these boards i went from freaking out inside to remaining fairly calm inside..its alot better to understand things than fear them.Im ex military myself(army)and very much into lifting weights and exercising so when i found out i was sandbagged but all u can do is learn and fight..i was back to riding a statinary bike one week after surgery and im back to lifting weights again(very light of course).They started me on 125mcg of levothyroxine on dec 27th and other than some lethargy and minor joint aches i feel pretty good.Anyway enough rambling,My wife promised me i could watch all the football i want this weekend so time to go..Ha Ha HA
best of luck to you and feel free to ask anything the people on these boards have been amazing for info and support
Roman

[EspritLibre]

Does everyone need surgery for nodules?  My endo is ultrasounding mine tomorrow (after watching for 1 year) & last year he said "this doesn't worry me"  

What's up???

[Lightsmsb]

Hello, had my preop today.  All is st for the surgery on Thursday.  Question, what is the usual time frame for haveing RAI after surgery?  Also, will I get meds after my surgery?  I forgot to ask the Doc today and wanted to know from you all how long you all got this?  THanks for all your support!
Scott

[Majistar]

Hello all my name is Kristen and I am a 41 year old female.  I've been battling problems with my throat for over 4 years now...I had my parotid gland removed by way of superficial surgery.  Then I had abcessed the size of a golf ball in my right side jaw.  He then took my tonsils out and that still didn't help.  I was always swollen in the right side of my neck so he performed an exploritory on my right side and nothing came up.  Then he repeated it again.  I was sent to a specialist and they did what is called a salivia scope and that cleaned out my submandibular and other saliva glands.  During a routine MRI that is when they found the nodle on my left side of my thryoid.  I had a ultra sound and and a nuclear uptake. Then was schelduled for a biopsy of the left lobe.  It came back beign.  It was a calcium growth measuring 1 x .09.  They reports said it was appearing follicular epithelial cells with some nuclear overlap and mild anisoncleosis, consistent with orgir from an adenomatoid nodule.   NO MALIGNANT CELLS SEEN.   I asked him to remove the growth and he did.  THANK G-d he did because I now have cancer and the growth is .4cm.  I had faith in my doctor and for this I am thankful for him.  My father had lost his voice at an early age in fact he was 36 and is now 73 and doing great. I under go a complete throidectomy this coming monday 23 July 07. Am I afraid??? yeah who wouldn't be when you where just told you have cancer....but I have extreme faith in my doctor because he believed in me enough to perform the surgery I wanted.  Even tho all my blood tests where normal and the other doctors said leave it alone it is "just" a nodule!  

[malawi]

You certainly have had a rough go of it the last couple of years but im glad that they discovered the cancer.You definitely sound like a strong person and your cancer is very small at .4cm so you should do very well indeed.I had surgery for follicular thyroid cancer last december(2.6cm)and i recovered quickly like most people on this board.The hardest part is getting your right dosage of synthroid which can take up to several months.I will be sending some positive vibes your way for monday.Any kind of surgery can be scary but it sounds like you are in good hands so try not to worry so much!
Good Luck
Roman

[Majistar]

I just had my thryoid removed and am doing ok...you have to remeber this was the 2nd incision to my neck in less than 7 days.....I know my synthroid is not high enough because I am low and depressed but in good spirits...VERY TIRED and sore but you know when your doctor tells you not to ignore a problem go with his feelings...he does know what she/he is talking about...considering the presurgery nurse told me not to have the operation that she has a nodule and it is fine...but I went with my heart and the surgerons advice...and in the long run I had made the right decision!! G-d bless you all and its about life and health!!! Love you all!~

[JoBa]

I am in the same boat you are, only not quite as far along.  I just got my biopsy results yesterday and they too are "suspicious for papillary" carcinoma.  It is not uncommon in men, although I am female, so you are definitely not alone.  I was absolutely crazed last night, but my Dr. prescribed Xanax and today I fell pretty good (Better living through chemistry.)  Of course, information provided on this forum has helped the most. I found all of these responses to your extremely helpful since I have so many of the same questions.  I cannot reiterate how helpful to me this group has been in the past couple of days.  Thanks to all.

[Majistar]

Young lady you will be fine....I was also in self denial for awhile but you know I got through it and I know several other people from around here that are doing great....they say when you get this type of cancer (not that any cancer is good) but when it capsulizes in on area that means it didn't spread to any other places...trust me your doctor wants you to live a long healthy life and grow old...we are indeed scared when they tell us "you" have cancer...but Trust me and Trust G-d and MOST ASSURED TRUST THIS DOCTOR!!!!! They are tools from G-d and I promise you that you will get better and if you ever need to talk holler away because I am here for you!! G-d Bless you and love to you all!!

[dart frog]

Lightsmsb- Welcome to the board! Lots of good people here who will support you every step of the way through your treatment.

Espritlibre- no not all nodules have to be removed. They usually leave them alone unless they start causing problems with breathing or swollowing.

Rhonda-dart frog

[ChitChatNine]

I think Scott is away .. didn't he go someplace far away for a few months was it?

Cheryl

[malawi]

Hi Kristen
So Glad you had a successful surgery!Im glad that part is behind you.If you have any questions about your RAI please feel free to ask as almost all of us have been through it.Youve got a good prognosis there as it did not go to the nodes as papillary is prone to do.I had a 2.6 hurthle/follicular removed last december and just received a clear scan at the 7 month mark.Ill be hoping you breeze through your RAI and get on your way to being healthy again.
Roman

[Majistar]

I had a complete Thyroid ect on 26 July and they had to send my thyroid out to Pitts PA to be assesed.  Upon determination of the results I am a T3 and have to have radition starting 20 Aug 07.  It is Papillary cancer but on the postive side it didn't travel through the lymph nodes!!! I'll keep everyone posted thank you for all your support!!!

[Majistar]

I've yet not been into the cancer treatment center as they keep changing my appointment!! I now have high sugar levels and my chlosteral levels are beyond hi.  I am trying to keep my head up but find myself getting low lately as said they keep prolonging me to get into the center!

[Majistar]

During a mamogram (mammogram) today they found an oval inhomgenous hypoechic mass in my right breast.  I have to have this a biospy before my RAI.  Sigh....everywomen should know the importance of having an annual exam for everything... Malawi...did you have papulary cancer in the tissue and a couple of the lymph nodes where still swollen in the neck??? They claim if they hurt its a good sign...if they didn't then you would have reason to suspect more... They said this new finding in my breast is from the throyid....this dang throyd is something else... I am off my synthetic for now then I start it the 2nd day during my RAI...let me know what you felt...did you get sick???? Did you feel weak??? Was your appetiate good??? My liver functions are elvated...did you get a whole body scan after the 7 day treatment?? please let me know.  G-d bless you!

[DLA]

Am sooo sorry for your latest news.  Am praying that all goes well and that it is really nothing!
Dac

[Majistar]

Thank you so much for your blessings.....DLA what does the RAI feel like???

[oct8th]

I'm new here with upcoming surgery in 3 weeks. Also found after a carotid was done altho knew I had a goiter. Was told by surgeon could wait if wanted to but after never feeling good, then finding lump under my arm among other things decided to just do it. Guess lump was "just" a swollen lymph node........ makes me more nervous but was told thyroid can do weird things to ones body. Looks like this site is going to be my piece of mind ofr now.  Thanks in advance for any comments .

[kipland]

Hi there!  I'm so sorry that you've had so much thrown at you recently.  Just be thankful that since they're doing all the checking due to the thyroid, that the mass in the breast was found.  I know, it's scary but at least they know it's there and are running the necessary tests to find out what it is and take care of it.

I had TT on 8/6/07 for thyca and am going in for my RAI treatment next week.  I've been following the LID diet this whole last week and need to continue for two days after my treatment dose - which is next Thursday.  Since I haven't had the RAI yet, I can't help you on how it makes you feel.  But from what I've read, it's not bad.  Maybe some nausea and feeling tired.  That's how I've been feeling that last few weeks anyway!  The nurse at Nuclear Medicine told me that my TSH had to be above 30 to have the RAI treatment.  I was hoping and praying that it was, because I have been feeling SO bad.  Nausea to the point where I couldn't eat - and they prescribed some anti-nausea meds for me.  I'm also having trouble with constipation and this nagging all day headache.  I think I figured out why when I got the results of my bloodwork.  My TSH was at 131 as of Friday!  I don't know how fast it climbs, but I'm ready to get on some meds to lower it.

When do you have your RAI, or are you waiting on a date until after the biopsy?  How are you feeling?  Since mine is next week, and you're so close, I'll keep you posted, okay?  It's scary, I know.  But there are lots of people out here who care and can give you support.  Take care!

Lori

[ChitChatNine]

Let us know how things go on the breast finding .... I am so sorry you are going thru this .. I better get my mammo done .. I'm 6mos overdue for yearly ckup.........::::::::e-hugs:::::::;;

Cheryl

[sher231]

ive had the surgery although now after a year medication has being adjusted to a higher level i couldlnt work or do anything at normal blood levels of thryoid so they put it up.  blood levels are a bit high but not much. my head gets like a heaviness over it and so tired under the eyes
i want to just sleep.  this happens consistently expecially when my daily
schedule is changed in work especially.  i am a fitness manager so
have realy worked on my immune system getting it to a good place
where it is healthy.  So at this point i know its not that.  ive had several tests and nothing.  i used to work out like crazy now i can only do 2 days a week .  it seems like the surgery done me in .  also a proffesesional musician and vocally can not sing like i used to.
If i get up a 9am go out to work im so fatigued all day my head hurts
and when i get home i have to sleep.  they say my levels are good so anyone out there have the same thing??  My whole life is diffeerent in what i do i cant take the busy schedule anymore.

please send my information if you got any that would help me.
thanks

sheryl