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Old 07-11-2013, 09:05 PM   #2431
angwill
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Update: Had the biopsy this morning with 9 biopsies. Got a call about 5 hours later that there are cancer cells so they on to a surgeon to remove the right side of my thyroid. Thank God I didn't listen to the old doc or I would still be waiting to be able to get the RAI uptake scan. Anyone know if that is a day surgery or would I have to stay overnight? Anyone want to share details of theirs thyroid surgery and any advice? Thanks so much,

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Old 07-11-2013, 09:35 PM   #2432
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Update: Had the biopsy this morning with 9 biopsies. Got a call about 5 hours later that there are cancer cells so they on to a surgeon to remove the right side of my thyroid. Thank God I didn't listen to the old doc or I would still be waiting to be able to get the RAI uptake scan. Anyone know if that is a day surgery or would I have to stay overnight? Anyone want to share details of theirs thyroid surgery and any advice? Thanks so much,

Ang
Remember every surgery is different. Mine was 20 years ago and it was a total thyroidectomy, lasting four hours. I was in the hospital for two nights, in the "step down" unit. Bloodwork was done around the clock to make sure calcium levels were good. My friend had her surgery in the past few years and it was same day. Personally, I think it should be a hospital stay. I was pretty weak for a few days.

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Old 07-11-2013, 10:00 PM   #2433
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Sorry for your diagnosis. 1. They shouldn't still be taking out half a thyroid for cancer. They need to take out the whole thing. That used to be accepted treatment, it's not any more. 2. Mine was what they call a 23.5 hour stay, which makes it less than 24 hours for insurance purposes. (Though IIRC, you're not currently insured?)
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Old 07-12-2013, 09:03 AM   #2434
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Sorry my answer last night was brief but I wanted to get the info to you ASAP- removing half a thyroid is no longer considered appropriate treatment for thyroid cancer. They used to leave half a thyroid if it looked fine, but it just comes back, so they don't mess with having people go through two surgeries anymore.
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Old 07-12-2013, 02:14 PM   #2435
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Sorry about your diagnosis.

Definitely get the whole thing out. Hopefully your surgeon will know this. I know you've mentioned your lack of insurance so I hope you are able to find a surgeon experienced with thyroidectomies. It's important.

Also, visit www.thyca.org. This is an organization devoted to thyroid cancer patients and survivors. There are messge boards there where you can learn a LOT and also get recommendations from people in your area on surgeons.
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Old 07-12-2013, 03:03 PM   #2436
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angwill - sorry about your diagnosis. As the others have said, I would def. get the whole thyroid out, not one side.

I would see about staying overnight at the bare min. That way they can check your calcium levels. Also check for any surgical complications.

My surgery was not normal and I had to stay in the hospital for a week.

Try to find a surgeon who does about 100 thyroidectomies a year. Mine did and he still still ran into so many complications with me.

Wishing you all the best
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Old 07-17-2013, 11:19 AM   #2437
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So how is everyone doing?

Angwill - did you get to make an appt. with a surgeon yet?

I made an appt. for the blood test sat.

After lunch I will look into making the sono appt. Ds2 or 3 will take me to that. I will do it while dh is away.

Need to look into making an internist appt. too.

micayla - how are you feeling?

Has anyone heard of this? I think I just read it (forgot where), it was really her personal comment but then someone else said something etc. I think. She said she had a hard time breast feeding her kids etc. Someone else said there might be a link to that and thy ca??? Never heard of this before. Has anyone else. Just curious as to what everyone elses experiences were. I already had the fibroadenoma out on my L said so that side was not working and I tried breast feeding the first ds and he never gained weight and became a permanent fixture on my chest so after 3 months I gave up. I didnt even think about it with ds 2 since we were in the middle of moving cross country and ds 3 forget it since my sister died 3 days after he was born. But wondering if there is some kind of link???

Christine - I just won 6 books, 2 of them from Goodreads, so I will have a busy summer. Just started one, its short - The Butler based on the upcoming movie. I got a review copy and I got a signed by the author copy of Bomb Shell by Catherine Coulter!

Ok back to the regularly scheduled thyroid thread!
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Old 07-18-2013, 12:24 AM   #2438
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Hi, I didn't get notification of everyones posts sorry.

I did see the surgeon and my surgery is July 30th for a total thyroidectomy and at least a day and three quarters in the hospital. The sugeon then said two rounds of radiation but from what I am reading and seeing on utube from the pros one should be enough so I will most likely talk to him about that. I am dreading that the most. Well I have never been in a hospital so the surgery is freaking me out too though.

I too read and saw on utube that you should find a surgeon who does at least on thyroidectomy a month because that is the most important part with thyroid cancer. That freaks me out too because I asked the surgeons nurse if he does them often and she said oh yeah there is no worry there in the last 10 years I worked for him he has done at least 10-15 which means 1 to 1.5 per year. My doctor did tell me if she were going to get the surgery she would go to him insurance or not that he is the best she knows in the area.

Here are the issues, first I live in the middle of nowhere so that is probably why he has not done more than that and most likely nobody in the area has done more. There are no thyroid specialists anywhere within at least a 2 hour radius and even if there were I am a cash pay customer and the one surgeon I got is the only one the doctor knows of anywhere near me that takes cash paying patients on a payment plan. No other surgeon will even talk to me without payment up front and that is not possible for me. Gotta love the American health care system.
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Old 07-18-2013, 12:54 AM   #2439
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angwill - I am glad you have a surgery date. I would have some concerns about the surgeon. It seems like that is not a good enough number of surgeries for him/her to deal with any complications etc. Is this a general surgeon, ent surgeon etc. But I guess this is the best option for you.

I am sure one dose of rai will be enough. They will tell you what your dose will be etc. They will address all the issues/concerns etc. since you said you live far from the hosp. There is only 1 hospital in our county that does the rai and it happens to be the one where I had my surgery so it worked out well and its close to my home.

I lived pretty close to the hospital. about 20 minutes, but since I also had a draining stomach wound at the time which was unrelated to the cancer but from another surgery I stayed overnight for the rai. It was a creepy experience but had to be done. I dont think I will never look at blue plastic in quite the same way again.

Its probably all overwhelming but just take it one step at a time.

Hang in there!
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Old 07-18-2013, 01:16 AM   #2440
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Hi...Hashimoto's since 2004...

I didn't even know that this thread existed until now- I just happened to click on "Today's Posts" and "THYROID" just about jumped off the page!

I apologize that I haven't read through all the posts yet- I will do that (it will keep me sane while I anxiously await Fall FD to be announced!). I just wanted to say hi and thank the OP for starting this. The journey with thyroid issues can often be a lonely one- thankfully, my husband is very supportive. Most others are like, "Don't you just take a pill? It could be worse!"

My title is a bit incorrect- I guess you could say "Hypothyroid since 2004 and dx with Hashi's by the grace of God in 2006!" My thyroid issue was detected by a wellness screening the school district I was working for offered every 2 yrs. My TSH came back at 13.4. I didn't have a doctor then so my boss referred me to her GP who put me on $ynthroid and said all my other symptoms were due to me being female and hormonal. Granted, my mom passed away from cancer in '03 12 days after my wedding day, so in 2004, I was still reeling from that and moving 12 hours away from family. However, looking back, I can see symptoms popping up even before that---maybe even in childhood.

On $ynthroid and a statin for my high cholesterol (at the ripe old age of 29), my TSH went down to 5. Cholesterol didn't budge much at all. I didn't feel any better and I started having problems with my feet (later dx with plantar fasciitis). I didn't get cold like most hypos do but my temp would fluctuate. I met a ThyCa survivor through an online support group I stumbled upon while Googling "thyroid" one night. It turns out it was a group for thyroid sufferers in my area and DH and I went to one of their meetings. I learned about FT3 and FT4 and how they can be more important than TSH. I learned about antibodies. I learned that there were more meds out there..that there were more drs out there. They saw a guy 6 hrs away!! Now, we live in a big city with plenty of endocrinologists. Why would they drive out there to see a Family Practice Guy?? Well, long story short, that dude is one of the reasons we have a precious 4 1/2 yr old son!!!!! DH sees him as well .

Oh- I didn't see "doc" until late 2006 after an allergist called with results from some blood work he ran as part of my allergy test panel (b/c my eyes randomly swelled up at work one day- school nurse sent me to my dr (the one who didn't think I was really sick) who sent me back to work. Nurse sent me to urgent care who gave me a shot in the keister and referred me to the allergist. Allergist asks if I'd ever been told I have Hashimoto's disease (over the phone). "Hashi-what??" Turns out, my antibodies were over 1800.

Today, they are in the 400s and I see the "doc" 1x a year. One of my "heart mom" friends was just DX with ThyCa and had a complete thyroidectomy last month. She has urged me to ask to have mine scanned. I plan to talk to "doc" the next time I see him.

Thank you for indulging me. I'm sorry if this was long. Believe me, they way I talk, it could have been much longer!!

Do any of you have secondary chronic issues? I'm not sure how much to attribute to me being athletic in my younger years and my body falling apart naturally to slower healing due to wonky levels. This sounds silly, but my main thing (other than being disgusted at the mere thought of exercising) is my left foot. Heel spurs. I went from wonky arches with the plantar fasciitis (finally finding out my feet Birkenstocks) to stinking heel pain and wishing I could have something cushy just for my heel. We are heading back to WDW in November and I stress about footwear!! Last year I did a Chaco/Birkenstock combo. Even after breaking the Chacos in for 5 months, they still started rubbing a blister on my big toe. Switching to the Birkenstocks fixed that but my heel ached more (to the point where I dreaded getting up and going the next morning and applied moleskin to my FEET while wearing sandals! Fashonista, right here!).

Ok. Really going now. Nice to "meet" all of you!
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Old 07-18-2013, 08:00 PM   #2441
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Originally Posted by aym4Him View Post
I didn't even know that this thread existed until now- I just happened to click on "Today's Posts" and "THYROID" just about jumped off the page!

I apologize that I haven't read through all the posts yet- I will do that (it will keep me sane while I anxiously await Fall FD to be announced!). I just wanted to say hi and thank the OP for starting this. The journey with thyroid issues can often be a lonely one- thankfully, my husband is very supportive. Most others are like, "Don't you just take a pill? It could be worse!"

My title is a bit incorrect- I guess you could say "Hypothyroid since 2004 and dx with Hashi's by the grace of God in 2006!" My thyroid issue was detected by a wellness screening the school district I was working for offered every 2 yrs. My TSH came back at 13.4. I didn't have a doctor then so my boss referred me to her GP who put me on $ynthroid and said all my other symptoms were due to me being female and hormonal. Granted, my mom passed away from cancer in '03 12 days after my wedding day, so in 2004, I was still reeling from that and moving 12 hours away from family. However, looking back, I can see symptoms popping up even before that---maybe even in childhood.

On $ynthroid and a statin for my high cholesterol (at the ripe old age of 29), my TSH went down to 5. Cholesterol didn't budge much at all. I didn't feel any better and I started having problems with my feet (later dx with plantar fasciitis). I didn't get cold like most hypos do but my temp would fluctuate. I met a ThyCa survivor through an online support group I stumbled upon while Googling "thyroid" one night. It turns out it was a group for thyroid sufferers in my area and DH and I went to one of their meetings. I learned about FT3 and FT4 and how they can be more important than TSH. I learned about antibodies. I learned that there were more meds out there..that there were more drs out there. They saw a guy 6 hrs away!! Now, we live in a big city with plenty of endocrinologists. Why would they drive out there to see a Family Practice Guy?? Well, long story short, that dude is one of the reasons we have a precious 4 1/2 yr old son!!!!! DH sees him as well .

Oh- I didn't see "doc" until late 2006 after an allergist called with results from some blood work he ran as part of my allergy test panel (b/c my eyes randomly swelled up at work one day- school nurse sent me to my dr (the one who didn't think I was really sick) who sent me back to work. Nurse sent me to urgent care who gave me a shot in the keister and referred me to the allergist. Allergist asks if I'd ever been told I have Hashimoto's disease (over the phone). "Hashi-what??" Turns out, my antibodies were over 1800.

Today, they are in the 400s and I see the "doc" 1x a year. One of my "heart mom" friends was just DX with ThyCa and had a complete thyroidectomy last month. She has urged me to ask to have mine scanned. I plan to talk to "doc" the next time I see him.

Thank you for indulging me. I'm sorry if this was long. Believe me, they way I talk, it could have been much longer!!

Do any of you have secondary chronic issues? I'm not sure how much to attribute to me being athletic in my younger years and my body falling apart naturally to slower healing due to wonky levels. This sounds silly, but my main thing (other than being disgusted at the mere thought of exercising) is my left foot. Heel spurs. I went from wonky arches with the plantar fasciitis (finally finding out my feet Birkenstocks) to stinking heel pain and wishing I could have something cushy just for my heel. We are heading back to WDW in November and I stress about footwear!! Last year I did a Chaco/Birkenstock combo. Even after breaking the Chacos in for 5 months, they still started rubbing a blister on my big toe. Switching to the Birkenstocks fixed that but my heel ached more (to the point where I dreaded getting up and going the next morning and applied moleskin to my FEET while wearing sandals! Fashonista, right here!).

Ok. Really going now. Nice to "meet" all of you!
Welcome! I do have some secondary issues, but I had thyroid cancer...nothing like heel pain or anything.
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Old 07-18-2013, 08:04 PM   #2442
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Angwill- I hate that your options seem so limited. I had a fabulous surgeon and I didn't know what a blessing it was until much later- how people loose parathyroids, get their voices damaged, etc. I don't mean to discourage you but I would encourage you tokeep researching if there are ANY other options at all.

I had two doses, and I wish I had just had one higher dose up front. I read a book by a husband and wife couple- can't think what it was but a married couple, he's a doctor and she's a thyroid cancer survivor- and IIRC they said when it was spread to your lymph nodes your 1st dose should be at least 200? I know it was higher than what I got, and I can't help but wonder if I would have had to have the second one if the first one had been higher.
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Old 07-18-2013, 08:06 PM   #2443
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LMP-

I am actually feeling very well, and am so excited.

I don't know if there is a connection between thyroid and BF or not, but I'll be googling!

My mother just called and said her doctor told her her pituitary gland is dying but he won't supplement her thyroid until it dies completely, so she should expect to keep gaining weight, being tired, and lose her hair! This makes no sense to me but I'm not having luck googling it because she doesn't know what the actual diagnosis is.
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Old 07-18-2013, 11:24 PM   #2444
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aym4Him - I cant really comment about the Hashis. I know Christine knows a lot more about that then I do. What kind of scan do they want to do, ultrasound?, uptake scan etc? Saw about your special little guy. He is precious and a miracle for sure. I use to live in the Dallas area (Duncanville, Lancaster etc.) Sure do miss it. I took my ds to childrens in dallas for some possible heart issues. They thought they might have a genetic heart condition,but it turns out they didnt so we were so blessed. (My sister died from Marfans and had a ruptured aorta)But I would def.get your thyroid checked out.I think Hashis really does a number on it. Its important to make sure your levels are good. How much synthroid/levo etc do you take? Cant comment on the other issues, like foot. I was born with a lot of bad genetic stuff so there are so many regular things wrong with me, I wouldnt even know what a normal thing was. Hang in there. One day at a time.

angwill - I am concerned about your limited options too. Is there also a social worker at the hospital you could talk to and what you might qualify for under your state program etc? The radiation is pretty expensive too. Also you can do the withdrawl or thyrogen routes for that and the thyrogen is like $1k a shot? I am not sure because I had it 4 years ago. You need 2 of those or else you go through the withdrawl and people on here could tell you all about that, but I didnt do that route. My body was just too weak. I had already had 4 operations, lost a lot of blood and had to have some of my colon resected that was not due to the cancer, so I am not usual. I will spare you the other details till later on Please try to get the best care you can based on the resources that are available to you.

Micayla - Sorry your mom is going through that too. Glad you are feeling good. I was always in puke city for the first 3 months.

I guess my nonscientific cancer question is: Did anyone have trouble breast feeding and then later on get thyroid cancer? Just wondering if there is some kind of link.Oh count me in as a yes, lol!

I made my blood test appt. for sat. Next onto the sonogram. I will try to have one of the ds take me. They never have parking there. I guess cancer is hot at the hosp.as well as people taking parking places because they dont want to pay the parking garage fee.

Well my poor dh has a bad staph infection in his toe.They wanted to take his toenail off today.He said no.He is leaving Sunday for a week in Siberia Russia.I am not thrilled. to say the least. I will be doing alot of praying for sure.
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Old 07-18-2013, 11:32 PM   #2445
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Oh did I mention that I might be going to Disney the end of Sept. My cousin is going and he said we should meet up. His dd , dh and their 2 boys will be there too. They live in the next state, never invite us to visit. Well we arent all that close, but he wants to get together in Disney. So hey, I will take it if it all works out.

I am going to do it on the cheap again
6 nights FREE at the Swan - thanks to dh frequent flier miles
Aps - o no cost for parks
Southwest - I might have some points to use toward a trip. So gonna look for something cheap for that
Food - going to get another tiw card because we will use it again in december. Going to probably stay at the swan again for free - thanks to dh ff miles. 2 nights at the beach club too.

I figure dh and I arent getting any younger and who knows with all my health issues on top of the cancer so there is no time like the present for Disney!
I have a feeling I will be looking at a hip replacement in the not too distant future.
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