The THYROID Thread

[sjlupin]

GET TO GO OFF LID TOMORROW!!!!!!

I am soooo happy. I just wish my mouth wasn't so sore! Hopefully I will be able to eat some yummy food!

 

[mrsklamc]

GET TO GO OFF LID TOMORROW!!!!!!

I am soooo happy. I just wish my mouth wasn't so sore! Hopefully I will be able to eat some yummy food!

So happy for you! My tastebuds burned out about a week post RAI (higher dose though) so if that happens, don't worry, they will come back eventually.

 

[sjlupin]

Phew! Over the last few days I have read through this ENTIRE thread - all pages, every post. It was fascinating - like reading a novel, stepping through all of your journeys over the past number of years. I couldn't 'put it down'!

Oh, how I wish I had found you back in January when I started this journey!! You are all such amazing and strong women and men!!! Having read all of this, I sort of feel like I 'know' you all! So I thought maybe I'd sort of 'introduce' myself, if that is ok?

My name is Sandy and I am 45. I am a born and bread New Englander DH and I have been married 20 years and have 3 wonderful kids - DS17, DD15 and DD12 (almost 13!). I am a software enginner and work full time. I also coach my DDs soccer teams (2 teams at the moment!) and I play on an over 40s womens soccer team (I am a goalie!). It probably goes without saying, since I am on the disboards, that we LOVE Disney!!

In January - the 18th to be exact - I went to my ENT for my regular ear check. I have had alot of ear infections as an adult and I see my ENT every 3-4 months, which keeps things in check. Just before he was leaving, I - sort of off the cuff - asked him if I could ask a question about my allergies. I was having an allergy symtpom involving my throat, so thought I'd ask him. He said sure and then said let me take a quick peek in your nose and throat and feel your lymphs. When he did that he said 'huh, your thyroid is enlarged'. I said, 'yeah I've been told that'. See, I have been hypo for about 10 years, with my dose of Sythroid rising every now and them over time. My GP has said that it was enlarged before, but never offered to follow up on it, just tested my TSH and raised my meds. I assumed the enlargement was due to the hypo. In hindsight I so wish I had pushed the issue. I realize now that the enlarged thryoid was bothering me far more than I realized - I could not stand anything around my neck, was starting to have a feeling of 'pressing' on my windpipe and I also realize now it was affecting my breathing.

Anyhoo ... he said 'what did your ultrasound show' ... 'I haven't had an ultrasound' ... 'I think we should do an ultrasound'.

So, 2 days later I had the ultrasound. The doc had told me if there was anything to follow up on they would call right away, otherwise I would just get a letter. 2 loooong weeks later, I still had gotten neither! I called the office and she looked up my test results and said 'I'll have to have someone call you back'. Ugh. I had convinced myself that since he didn't call, all was well. He finally called be back that Sunday - Super Bowl Sunday - and said the ultrasound showed nodules and we would beed to do a biopsy. I was SO bummed. Then my beloved Patriots went on to lose ... not a great day

Scheduling the FNA was a pain. I had a business trip to Reston, VA and then was leaving for a family vacation to Florida the week we wanted to do it. I was able to get in on Friday afternoon - got home from VA on Thursday, had the FNA Friday and flew to Florida Saturday. It's funny in pics from vacation you can see my bruising from the FNA. Lol.

We got home from Florida on Friday and my doc called me Saturday morning. The biospy showed Atypical cells - inconclusive for cancer. He said we needed to take it out.

Surgery was on March 8th. They did the frozen section during and he was able to tell me when I woke up that it was cancer. I was crushed. Funny - I thought I was completey prepared to hear that, even said to DH on the way to the hospital 'I really have a feeling it is cancer' but it still hit me hard to be told that I did. I was in the hospital 1 night. Had some small issues - mostly with my throat. I was having a lot of weird wheezing that they didn't like and coughing. My throat was incredibly sore. I couldn't really eat much solid for about 4 days. Had voice issues too, but that got better very slowly - seems pretty good now.

Full pathology showed stage 1 papillary. Multiple sites in each node. He removed 13 lymphs and 1 parathyroid and ALL were totally clear.

All in all, my recovery has been really good. I am proud to say that just 8 weeks post-op I travelled to WDW with DS17 and we participated in the Expedition Everest Challenge! And we didn't do too badly all things considered!! We had a blast - mom and son long weeked at the World!

As I mentioned ealier, I just did RAI on Wednesday. I am finally off LID. I just ate a piece of toast with butter - never thought something so simple could taste SO good! Kids have a half day today - DS17 said when he gets home he will go out and get me something good to eat. I think I really want something like a bacon egg and cheese sandwhich! Mmmm.

Wow ... that was long. If you have read this far - God bless you!! It is so wonderful to have found this thread and to be able to 'talk' to people that understand. THANK YOU ALL!!

Sandy

 

[Christine]

Phew! Over the last few days I have read through this ENTIRE thread - all pages, every post. It was fascinating - like reading a novel, stepping through all of your journeys over the past number of years. I couldn't 'put it down'!

Oh, how I wish I had found you back in January when I started this journey!! You are all such amazing and strong women and men!!! Having read all of this, I sort of feel like I 'know' you all! So I thought maybe I'd sort of 'introduce' myself, if that is ok?

My name is Sandy and I am 45. I am a born and bread New Englander DH and I have been married 20 years and have 3 wonderful kids - DS17, DD15 and DD12 (almost 13!). I am a software enginner and work full time. I also coach my DDs soccer teams (2 teams at the moment!) and I play on an over 40s womens soccer team (I am a goalie!). It probably goes without saying, since I am on the disboards, that we LOVE Disney!!

In January - the 18th to be exact - I went to my ENT for my regular ear check. I have had alot of ear infections as an adult and I see my ENT every 3-4 months, which keeps things in check. Just before he was leaving, I - sort of off the cuff - asked him if I could ask a question about my allergies. I was having an allergy symtpom involving my throat, so thought I'd ask him. He said sure and then said let me take a quick peek in your nose and throat and feel your lymphs. When he did that he said 'huh, your thyroid is enlarged'. I said, 'yeah I've been told that'. See, I have been hypo for about 10 years, with my dose of Sythroid rising every now and them over time. My GP has said that it was enlarged before, but never offered to follow up on it, just tested my TSH and raised my meds. I assumed the enlargement was due to the hypo. In hindsight I so wish I had pushed the issue. I realize now that the enlarged thryoid was bothering me far more than I realized - I could not stand anything around my neck, was starting to have a feeling of 'pressing' on my windpipe and I also realize now it was affecting my breathing.

Anyhoo ... he said 'what did your ultrasound show' ... 'I haven't had an ultrasound' ... 'I think we should do an ultrasound'.

So, 2 days later I had the ultrasound. The doc had told me if there was anything to follow up on they would call right away, otherwise I would just get a letter. 2 loooong weeks later, I still had gotten neither! I called the office and she looked up my test results and said 'I'll have to have someone call you back'. Ugh. I had convinced myself that since he didn't call, all was well. He finally called be back that Sunday - Super Bowl Sunday - and said the ultrasound showed nodules and we would beed to do a biopsy. I was SO bummed. Then my beloved Patriots went on to lose ... not a great day

Scheduling the FNA was a pain. I had a business trip to Reston, VA and then was leaving for a family vacation to Florida the week we wanted to do it. I was able to get in on Friday afternoon - got home from VA on Thursday, had the FNA Friday and flew to Florida Saturday. It's funny in pics from vacation you can see my bruising from the FNA. Lol.

We got home from Florida on Friday and my doc called me Saturday morning. The biospy showed Atypical cells - inconclusive for cancer. He said we needed to take it out.

Surgery was on March 8th. They did the frozen section during and he was able to tell me when I woke up that it was cancer. I was crushed. Funny - I thought I was completey prepared to hear that, even said to DH on the way to the hospital 'I really have a feeling it is cancer' but it still hit me hard to be told that I did. I was in the hospital 1 night. Had some small issues - mostly with my throat. I was having a lot of weird wheezing that they didn't like and coughing. My throat was incredibly sore. I couldn't really eat much solid for about 4 days. Had voice issues too, but that got better very slowly - seems pretty good now.

Full pathology showed stage 1 papillary. Multiple sites in each node. He removed 13 lymphs and 1 parathyroid and ALL were totally clear.

All in all, my recovery has been really good. I am proud to say that just 8 weeks post-op I travelled to WDW with DS17 and we participated in the Expedition Everest Challenge! And we didn't do too badly all things considered!! We had a blast - mom and son long weeked at the World!

As I mentioned ealier, I just did RAI on Wednesday. I am finally off LID. I just ate a piece of toast with butter - never thought something so simple could taste SO good! Kids have a half day today - DS17 said when he gets home he will go out and get me something good to eat. I think I really want something like a bacon egg and cheese sandwhich! Mmmm.

Wow ... that was long. If you have read this far - God bless you!! It is so wonderful to have found this thread and to be able to 'talk' to people that understand. THANK YOU ALL!!

Sandy

Sandy,

Thanks for telling your story. It sounds as if it went as well as it could and everything was confined to the thyroid.

It's funny, I think my "go to" food after the LID was always a bacon, egg, and cheese biscuit from McDonalds!

Your thyroid cancer was found much like mine--have a routine visit for something else.

Sounds like you are on the upside of things now and you should be care-free for while. Please hang around with us. This is not a "busy" thread but it helps to have other people chime in with their experiences occasionally.

Christine

 

[Haimia]

sjlupin - sounds like a lot that you went through, but so glad it is turning out good for you. It appears like your story and mine are often how it is found - not a direct problem, but as a side check or other condition revealing it.

 

[luvmarypoppins]

Quick post from the Beach Club, our last day

Got to see DISers Sha from the BC thread and Tuffcookie

Hot, swam twice in Storm A Long Bay

Best thing we saw so far, Cinderellas carriage, the horses and bride and groom right here

Lots of good food

My bones hurt so much

 

[sjlupin]

LMP - sounds great! We have stayed at the Beach Club 3 times and Stomalong Bay is SO awesome!

Can't wait to hear more about your trip and the FOOD!!

 

[sjlupin]

Hi guys!!

I had my scan today. It was quick and easy. I talked to my doctor this afternoon and it was totally CLEAN!!!! I said to him 'so at this point can I say I am cancer free?' - he said 'absolutely!'.

I am on CLOUD 9 .... so so so happy!

I see him in 4 months and he'll check my thyroglobulin then. Till then and I am in the clear!!!!!


Sandy

 

[mrsklamc]

Hi guys!!

I had my scan today. It was quick and easy. I talked to my doctor this afternoon and it was totally CLEAN!!!! I said to him 'so at this point can I say I am cancer free?' - he said 'absolutely!'.

I am on CLOUD 9 .... so so so happy!

I see him in 4 months and he'll check my thyroglobulin then. Till then and I am in the clear!!!!!


Sandy

Hooray! I had two wait two long years for those words!!! Enjoy celebrating!

 

[kimmie]

Hi Sandy!

Glad to hear that your scan was clean!

Your story sounds like mine too! I went for a routine physical and my GP found that my throid was enlarged...the rest is history!

 

[sjlupin]

Thanks!!

Micayla - I know ... you had a rough time! I honestly almost felt guilty coming here to post this yesterday. My journey through this was just 5 months and was pretty 'text book'. It hasn't been an easy 5 months, but compared to what some of you guys have been through it was nothing!!!

 

[Christine]

Thanks!!

Micayla - I know ... you had a rough time! I honestly almost felt guilty coming here to post this yesterday. My journey through this was just 5 months and was pretty 'text book'. It hasn't been an easy 5 months, but compared to what some of you guys have been through it was nothing!!!

Hi Sandy! I know you're on Cloud 9 so I don't want to rain on your parade but I do want to clarify something so that, if anyone down the line with thyroid cancer reads these posts, that this is clear.

So, just a few weeks ago you had your RAI treatment of 30 mci, correct? What you just had is a post-ablative scan, correct? From what every doctor told me over the years, you don't TRULY get a clean scan until you have your NEXT scan. You just had your ablation, it literally takes a few months to kill off your residual thyroid tissue. When you had the post-ablative scan, they take advantge of the fact that you have had a large dose and they use the scan to look for any distant metastises (sheesh I can never spell that word) that might be there that would not show up on a tracer dose. I'm betting that when they scanned you, the tech saw a nice beam of light in your neck where you thyroid used to be and was in the process of being obliterated and then they saw NOTHING anywhere else. For distant "mets" that's a clean scan.

Your next scan is going to be the one that gets you a victory. In 6-12 months, they will give you a tracer dose and scan you again. They will be hoping to not see that beam of light in your neck. If there is no light in the neck, your 30 mci will have done its job. If there is anything that lights up, it won't have completely ablated the residual.

So, while you have good reason to be happy and celebrate, I do feel that my above text is a bit of killjoy but I just want to make sure we have accurate info posted. And please, if I have misunderstood any of your treatments/timing please let me know.

 

[Haimia]

May 1, 2012 - T4 was 0.99 (normal 0.89 - 1.76)
T3 free was 1.88 (normal is 2.2 - 4.0)
TSH was 3.151 (normal 0.400 - 4.200)
thyroid peroxidase 0.3 (normal 0.0 - 9.0)

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm

May 11, 2012 - TSH 2.233 mclU/ml (0.400 - 4.200)
FT4 1.10 ng/dL (0.89 - 1.76)

FNA - two nodules, four samples, all benign

May 16, 2012 - TSH 2.8 (0.400 - 4.200)
FT4 .51 (0.89 - 1.76)
FT3 2.26 (2.2 - 4.0)

I have listed my prior bloodwork and the most recent from 5-16-12. I am to start 50 mcg of Synthroid. Any thoughts from those of you out there with knowledge? Thyroid is to be removed in August 2012.

 

[mrsklamc]

Thanks!!

Micayla - I know ... you had a rough time! I honestly almost felt guilty coming here to post this yesterday. My journey through this was just 5 months and was pretty 'text book'. It hasn't been an easy 5 months, but compared to what some of you guys have been through it was nothing!!!

Please DO NOT feel guilty. I did have a harder road than some, but a far easier road than others, and I am ecstatic that you got good news.

 

[mrsklamc]

May 1, 2012 - T4 was 0.99 (normal 0.89 - 1.76)
T3 free was 1.88 (normal is 2.2 - 4.0)
TSH was 3.151 (normal 0.400 - 4.200)
thyroid peroxidase 0.3 (normal 0.0 - 9.0)

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm

May 11, 2012 - TSH 2.233 mclU/ml (0.400 - 4.200)
FT4 1.10 ng/dL (0.89 - 1.76)

FNA - two nodules, four samples, all benign

May 16, 2012 - TSH 2.8 (0.400 - 4.200)
FT4 .51 (0.89 - 1.76)
FT3 2.26 (2.2 - 4.0)

I have listed my prior bloodwork and the most recent from 5-16-12. I am to start 50 mcg of Synthroid. Any thoughts from those of you out there with knowledge? Thyroid is to be removed in August 2012.

I'm sorry but you're way over my head! My levels were all fine pre-surgery and now TSH is the only one they watch.

 

[luvmarypoppins]

Haimia - I am so clueless as far as numbers are concerned, but yours all look within range. Just make sure you have a good experienced surgeon

Sandy - I am so happy to hear your scan was clean. Heres a for you. As Chrstine said, my oncologist too told me the first scan was important, but then the 1 year follow up scan was more important because that is when you see if the rai really did its job. They told us it could take up to a year to work. I figure any good news is welcome and a step in the right direction too.

I will probably do a little dining report from our trip. The worst place was Tutto, so disappointing in the food area. The guys singing Happy Birthday to me was awesome. Our favorite - Citricos!!

 

[luvmarypoppins]

Well if anyone wants to see a pic of me, go to the breast cancer thread on the community board, page 43. You can see that my neck looks weird.

Oh and I am the oldest one here I think, enough said

 

[Christine]

Well if anyone wants to see a pic of me, go to the breast cancer thread on the community board, page 43. You can see that my neck looks weird.

Oh and I am the oldest one here I think, enough said

Are you sure you're the oldest? I might be....

 

[sjlupin]

Again - thanks everyone.

I do realize that this is the not the complete 'all clear' but I am still beyond happy with the results thus far. No distant mets and nothing else lurking! When I was on the scan table all I could think of was my SILs large brain tumor that was found incidentally a few years back. She is great now, but went through hell for a while.

Hope everyone had a fantastic long weekend!

 

[luvmarypoppins]

I am done posting my dining reviews if anyone wants to read them.

Thanks Christine for stoping by I am glad I got them done now. I always forget something if its too late after the trip.

Now later I am doing a Disney Survey they sent me. Wonder what they do with all the comments you make? etc.

Also have to start making our adrs for the Nov. trip and trying to work out something for Food and Wine with my dh ff miles, but that is turning into a mess etc.

At least I get the month of June off then its blood test, sono and endo in July.

I still am up in the air about the eye surgery. Ds22 will not be allowed to drive for a long time, we just dont know for how long yet. That is still up in the air, so I would really have to ask the eye dr. how long I couldnt drive etc. since I will have to take him to school or the train.