I was diagnosed with thyroid cancer today.

[Tinkerbelle's Mom]

Thanks, Tinkerbelle's mom.
My DH left on a business trip this morning because we were sure the labs wouldn't be back so fast. He is flying back tomorrow, because we found out late this afternoon and there were no flights.

So I've been planning my dream trip to AKL that we'll never be able to afford. But, it's fun to plan and it keeps me occupied.

You are welcome.

Plan that dream trip - I did when I had my first cancer. Ironically it was to AKL as well. That was 8 years ago. This past May we were fianlly able to go b/c of the deal Disney offered at the time (buy four get three more free).

So you never know what life will bring you.

These days are hard. I was daignosed on the morning of 9/11 - blocks away from the pentagon. Even with all the chaos there was some parts of me that were not able to get away from the fact that I had cancer.

But the good thing is that these days will pass. There are many wonderful people here on the dis that have been there and are more than willing to listen to you and support you as you go through this.

 

[tikilyn]

Cancer sucks for sure but you will be ok!

I had a total thyroidectomy a year ago this Oct 6th for Graves disease! For some reason I chose an ENT as my surgeon. I figured he works on throats all the time so he would be a good choice! I had my surgery about 6 pm (I was his last patient for the day) and it took him two hours to remove my thyroid. He said it was like I had two tennis balls in my neck. He did an excellient job and by lunch time the next day I was eating a burger and french fries with a milk shake!! I had no pain what so ever after the surgery. My voice was hoarse for about 6 weeks after though.

Oh and thyroid meds are really cheap too. I pay 2.00 for a 90 day supply!

 

[Felicia]

Count me in as a thyroid cancer survivor!! Almost 9 years now!

My diagnosis was "follicular varient of papillary carcinoma". My nodule was on the small side (1.7) and encapsulated. I go for checkups every year with my doctor, Dr. Tuttle at Memorial Sloan Kettering, NYC.

I was scared to death of surgery, and my doctor had a patient who underwent the same procedure to contact me. It eased my a mind a little. Now, after going through it, I can honestly say it was easier than I could have imagined. I felt crappy for two days, then wanted to move around. You will be fine.

Ask any questions....

 

[marypoppinswannabe]

I have a family member who was diagnosed with this 11 years ago. She has been cancer-free since then. They say of all the types of cancer you can get that is the one to get because it is so highly curable once the thyroid has been removed. Plus the treatment for it is not as invasive.

Hugs to you and your family....

 

[mickeyboat]

Oh dear. I don't have any advice, just .

Sending good thoughts.

Denae

 

[mrsklamc]

Thank you, everyone. I haven't had any kind of surgery since tubes in my ears when I was 2, so I'm scared of the surgery, scared of the radioactive iodine, and scared of the hormone adjustment period. I appreciate all of the warm wishes and especially the prayers.

 

[minniebeth]

One day at a time....I hope you find all the answers for a good treatment you need! I wish you all the best....

 

[claudia]

They tell me it's the cancer to have...I have tons of questions and my dr. is of course closed...anyone out there with experience w/ this?

I am a 5 year survivor and would be happy to answer any questions you may have....feel free to PM me

 

[MissyDVC]

No advice, just prayers and pixie dust for you

 

[hrh_disney_queen]

I didn't have cancer, but I did have to have a partial thyroidectomy for nodules. I just wanted to let you know that it was a breeze! I went in the hospital in the morning, had the surgery(don't know how long it took or how big the nodule was), woke up a couple of hours later in my room to absolutely no pain or discomfort. I did have a large incision with those scary looking staples. My surgeon hid the incision in a crease in my neck, and it vanished in about 2-3 years. The staples were also easier to remove than stitches. I have been on Synthorid ever since. That was 9 years ago.

So if you do have to have surgery...don't be afraid. I didn't even need pain meds-not even Tylenol.

 

[Duchie]

Another survivor here - almost 6 years now. I know it's scary right now, but the type you have has an extremely high cure rate. I'm also happy to answer any questions you may have.

 

[ead79]

I'm sorry that you're dealing with this, and especially over a weekend when doctors are off.

My aunt was diagnosed with thyroid cancer several years ago, and she is doing totally fine now. She hasn't really had any problems at all once they got her synthroid dose right, and that didn't take as long as expected either.

My prayers are with you for a complete and speedy recovery.

 

[Christine]

I was diagnosed with papillary thyroid cancer in 1995. I had two surgeries due to the actually NOT having the diagnosis prior to surgery, the frozen section coming back benign, and then I had to have a second surgery to remove what remained.

I had a fairly small tumor (just under one centimeter) but it was multifocal which means that I had small cells of papillary "peppered" throughout my gland. This put me at a big higher risk.

My endocrinologist had not treated a lot of thyroid cancer (it didn't seem to be as widespread as it is now) and so he had to consult with someone at Johns Hopkins as to how much RAI to give me. They decided on 29.9 mci which is the "walking dose" meaning you don't have to stay in the hospital. THe nuclear physician who was treating me was not happy about that saying that many people getting that dose end up needing another treatment. Well, we followed doctor's orders and the nuclear physician ended up being correct.

I ended up changing endos, having two more treatments (in hospital) of 150 mci to get the darn residual tissue ablated. I've been fine since. The first two years were a bit of a roller coaster ride but now it has become something I don't dwell on and it's hard for me to believe I can say that.

I can tell you that you will be fine.

These days there's so much info on the interent. Read it and that way you will KNOW if you are being treated properly. There is much more info out there than there was 15 years ago and even the doctors are doing so much better at consistently treating people.

Make sure you have a doctor that follows the thyroid cancer protocols and that you do the Low Iodine Diet prior to treatment (ablation). It is important.

 

[powellrj]

I am so sorry and I hope things go well for you.

 

[mrsklamc]

Thank you so much, everyone. I am much calmer today. I think (and hope) that from what I have read online I might expect 1-2 weeks to recover from surgery and 6-8 weeks to find the right dosage of replacement hormones.After that I think it's entirely possible I can be back to being myself, plus an endocrinologist and a yearly x-ray. (plus or minus weight and $$.) Does that sound off to any of the survivors around here?

 

[lillygator]

I don't have experience with this, but am sending you prayers.

What were your symptoms that led you to gettting checked out, or did you have any?

 

[mrsklamc]

I had no symptoms at all. I was seeing an ARNP for something else and she said, without feeling it or anything, "you have swelling in the left side of your throat." Looking in a mirror, I still can't see it, and neither can my friends.

 

[Christine]

I had no symptoms at all. I was seeing an ARNP for something else and she said, without feeling it or anything, "you have swelling in the left side of your throat." Looking in a mirror, I still can't see it, and neither can my friends.

This was the same way I was diagnosed. I could never even feel my lump and neither could my surgeon for the most part. But this doctor at the urgent care had a very sensitive touch and she had "found" seven cases of thyroid cancer in my town.

As for what you've read, you are reading the textbook cases.

In general, the 1-2 weeks for surgery recovery is accurate. 6-8 weights for med stabilization is optimistic. You will probably feel better in tha amount of time but you won't be totally adjusted. You also have to take into account that synthetic thyroid hormone *is* a wonderful medication; however, it is not as perfect as your own. You might not feel the same. Or you might. Hard to say. I've been on it so long now that what is going on with me is my new normal. I don't remember before thyroid cancer. I remember in my early days complaining that I didn't feel like I used to.

As for an X-ray every year, it is more than likely be a whole body scan with Thyrogen injections, low iodine diet, and neck ultrasounds.

 

[Snoozan]

Another 10 year survivor of Papillary thyroid cancer here - the surgery was not bad at all - only the sore throat from having the tube down my throat for the anesthesia and just a small amount of discomfort from the actual incision. My ENT surgeon did not use staples, but sewed me up from the inside out so there was no need to remove any stitches/staples. The scar is not noticible in the least and I've got one of the skinniest necks my doctor has see - which does make it easier for my endocrinologist to examine my neck!

Be aware after surgery, you may have issues with your calcium levels so be sure to have some Tums or other form of calcium around. With the high dose of thryoid med you'll be taking the rest of your life(I take Levothroid and have had very good luck with that)- you'll be at much greater risk for osteoporosis so please take lots of calcium and Vit D(at least 2K mil)to help your bones. Breast cancer is also something to be more aware of if you have to do the radioactive iodine treatment so due diligent is needed with annual mammograms.

I had to do the radioactive iodine treatment 3 X and to this day there is still a tiny speck of thyroid tissue hiding in my body, so this is something that may be more of a "chronic" condition, but according to my Endocrinologist, shouldn't affect my life span in the least.

The mental aspect was probably worst for me - it was something that came to my mind every day for alot of years, but I finally did decide to not dwell on it and since I feel soooo good physically, it's easy to forget I went through this. Just take care of yourself - rest when you need to, but be sure to get lots of exercise to keep those bones healthy, and you, too, will beat this like the vast majority of us. I'm now 50 and am living life to the fullest as having cancer really woke me up to the fact that we only get one chance at life - I decided I wasn't going to just survive, I was going to thrive!

 

[Chim Chiminy]

My mom had it ten years ago, when I was expecting DD.

The cure rate is very high.

She had to do some radiation treatments, iodine, and eventually they removed her thyroid. She now takes synthroid.

Initially she lost a ton of weight, but has gained it all back in the ten years since.

Best of luck to you OP.