The THYROID Thread

[branv]

Thanks everyone! It's much appreciated My goodness luvmarypoppins, however did you not want to strangle someone? I'm sorry you went through that, but at least glad they could finally reach a conclusion so they knew how best to approach a cure for you.

On my end, the drama continues. It's actually so silly I'm tempted to laugh.

I got to the appointment today and they still had not received the info on the suspicious nodule. So they called the Veracyte lab. That lab could see that two nodules were a concern, but they'd only received the sample for the nonsuspicious one. So my doctor called the hospital pathology lab that was supposed to send it. All they know right now is that it was not sent. The hospital can see it was prepped by pathology for the Veracyte test, but right now they're having to investigate where the heck that sample IS.

If they find it, they'll send it, and I have to wait another two weeks.

If they can't find it, I have to have another FNA.

My spirits have been surprisingly high. Which sounds weird, given the circumstances. But I was really nervous this morning, bracing for bad news. So oddly, hearing that they didn't have bad news...just NO news, was kind of a "okay, well I can chill for a while"

Sheesh.

 

[lupitail]

Wow I never thought I would be taking thyroid on the DIS boards but so glad I found all of you!!

Diagnosed in April 2011 with Papillary. Had an orange sized tumor removed along with 94 lymph nodes. RAI in July of 2011 and another surgery in Oct of 2012 to remove Grape sized malignant lymph node sitting on my vocal chords. Had another ultra sound in Jan and it came back clean!!! Phew

 

[Christine]

Wow I never thought I would be taking thyroid on the DIS boards but so glad I found all of you!!

Diagnosed in April 2011 with Papillary. Had an orange sized tumor removed along with 94 lymph nodes. RAI in July of 2011 and another surgery in Oct of 2012 to remove Grape sized malignant lymph node sitting on my vocal chords. Had another ultra sound in Jan and it came back clean!!! Phew

Wow, orange-sized? I have run into a few people that had large tumors with their thyroid cancer (predominantly men). Were you conscious of that tumor in your neck? The ones I've talked to had no idea but I wonder how you can't feel that, unless it's not really growing in the size of a ball but is more elongated.

 

[luvmarypoppins]

branv - I too hope your appt. went well. You need and deserve answers. Totally stinks that you have to advocate for yourself so much with all you have on your plate. Wishing you all the best

Micayla - thinking of you too with the journey. I am sure you have lots on your plate too with all that involves. As I said before, I know what my cousin went through.

lupitail - welcome. Wow, those were some tumors. I had 2 too. My one was the biggest the dr. ever had I think he said. How big were each of them since you just describe it in terms of fruit, sorry I always think metrically and medically.

How much rai did you have. Just curious. I am the one always asking lots of questions here. Do you just have regular pap? Also just wondering what your daily snythroid dose is? Do you take the name brand or generic?

Wow that is a lot of lymph nodes for sure. I think I had almost 50 out. What was your malignant count? Mine was not too bad considering they said.

So what quadrants did they take the lymph nodes out of. I only had to have one quadrant done and that was by my littlest tumor but that little tumor almost killed me and now I cant really use my L arm good as he had to cut the nerve to get the tumor out etc.

Wising you all the best. I love to hear everyones survivor stories and details because I think it encourages and blesses us all here.

Share when you can and wishing you all the best.

I am chatty today, hmm guess that is because of Nemo and we are buried here with over 2 feet of snow.

Did I share before about how a little girl I taught at our churchs bible school had a brain tumor? Well sadly they just got the results back and its cancerous. She is only 13. Its near her pituitary gland and optic nerve. Now they say her parents are having to make some difficult decisions. Worse, I sure hope that girl does not have my radiation oncologist because she has no way with kids. I saw how she acted with 2 when I was there. Just so business and barely any compassion. Worse, the whole head of the rad. onc. dept. is no prize either. Just so business like etc. I am not liking the c word for sure today. My heart is breaking for this family.

Christine - good excuse for me to read later. I am reading The Lesson by Suzanne Woods Fisher.

 

[Christine]

Did I share before about how a little girl I taught at our churchs bible school had a brain tumor? Well sadly they just got the results back and its cancerous. She is only 13. Its near her pituitary gland and optic nerve. Now they say her parents are having to make some difficult decisions. Worse, I sure hope that girl does not have my radiation oncologist because she has no way with kids. I saw how she acted with 2 when I was there. Just so business and barely any compassion. Worse, the whole head of the rad. onc. dept. is no prize either. Just so business like etc. I am not liking the c word for sure today. My heart is breaking for this family.

So sad... For some reason, when teens get cancer it hits me the hardest. I don't know why. I think for a lot of people, the little kids seem the worst to them but, for me, the teens just upset me so bad.

Last year, one of my son's classmates passed away from leukemia shortly before her 16th birthday. It was heartbreaking. She had gone to the same school as my son did since elementary school and the illness was so quick and sudden and brutal, it still tortures me to this day.

I think the "teen" thing bothers me so much because, at that age, they really do have their whole loves in front of them and they are just coming into the realization of what's out there for them and all that they can be. They start falling in love/having crushes, getting their first taste of independence, and experiencing all sorts of "semi-adult" joys and to just have that ripped away from them is sad. And because they are older and wiser, they know exactly what is happening to them. At least with a small child you can shield them from some of the fear. You just can't do that with a teenager.

So, yeah, your story makes me sad. I feel so bad for the girl and her parents. It is something I would never want to go through.

Hang in there with all that snow. We got a portion of the blizzard here in the DC area but the effects of it were high winds (all.night.long) and rain.

 

[branv]

Oh that poor girl and her family. My heart just aches for them. It's hard to make sense of things when you hear of children having to go through something like that. I hope so much that they find a way to help her. And I wish for strength for all of them.

 

[lupitail]

Wow, orange-sized? I have run into a few people that had large tumors with their thyroid cancer (predominantly men). Were you conscious of that tumor in your neck? The ones I've talked to had no idea but I wonder how you can't feel that, unless it's not really growing in the size of a ball but is more elongated.

No didn't feel thing. Had been complaining of neck pain but that was about it. Woke up on day with a gumball size thing coming out of my neck. Surgeon said the tumor started bleeding and that was a scab that popped thru. Thank God it did!!!

 

[mrsklamc]

Hello again. There was nothing rare or spectacular about my cancer. Im actually struggling with a lot of guilt because the whole process was so easy for me.

Don't feel guilty.

Christine-- If you like fiction, have you read "The Fault in Our Stars"? Then again, maybe you shouldn't. I don't usually read fiction but it's a teenaged girl with thyroid cancer, and she lives in Indy, so I couldn't pass it up. I loved it.

 

[Christine]

Don't feel guilty.

Christine-- If you like fiction, have you read "The Fault in Our Stars"? Then again, maybe you shouldn't. I don't usually read fiction but it's a teenaged girl with thyroid cancer, and she lives in Indy, so I couldn't pass it up. I loved it.

Oh, I've read it and I recommended it a few pages back on this thread. I've also gushed about it several times on the 2013 book thread. I think it was my favorite book from last year.

 

[mrsklamc]

Oh, I've read it and I recommended it a few pages back on this thread. I've also gushed about it several times on the 2013 book thread. I think it was my favorite book from last year.

I just LOVED it and I don't usually read fiction or like sad books. John Green probably lives less than 10 miles from me. Sorry I either missed or forgot that you mentioned it.

 

[luvmarypoppins]

So I guess I must read this book.

Happy Valentines Day everyone Virtual flowers in case you dont get any. I am not getting any because I am allergic, But so thoughtful dh has offered to take me grocery shopping for valentines day. Guess that says love, right along with the 4 tires he bought me once for christmas,

Well did I say how my re clast infusion got cancelled. Dh and I were none too happy I was waiitng months for this infusion. So now its back on except at an earlier time next friday. DS21, the nurse to be is taking me. He wants to see the infusion. Sounds like some excellent bonding time

Oh and remember the girl I told you about. Well the tumor board met and now they are saying its a non cancerous tumor. I looked it up on line. Its really rare, a ? astrocytoma. Her mom wants to try natural food to shrink it because the only way to get rid of it since they only could resect 50% of it is with radiation and chemo which they want to start asap. So the mom is trying to get 2nd and 3rd opinions. I think she is looking at Duke. etc.

In the meantime, this girl is having her mom give her a diet of no carbs, no sugar, no dairy and something else. I think thats worse than the lid diet. She has 4 siblings and I am sure its gonna be bad when she sees what they eat etc. I cant even give her recommendations for all that. I think I might tell the mom to ask the dietician i had. She is really nice and helpful.I dont like to be pushy or nosy etc.

Hope everyone is doing ok

 

[luvmarypoppins]

Ugh,they have cancelled my infusion again for friday. The girl tells me there are 2 infusion nurses, one is in training and the other one has a sick dad in the hospital.

I announce my total frustration and displeasure. Asking is there is Any place else I can go etc. She says, well you can maybe go over to the cancer center if they have a chair for you. O.K. I really dont want to be taking someones chemo time away.

She reschedules my appt. for next friday and says she might have to cancel it again. I think I will see about looking into the cancer center.

Christine - guess what. I finally posted the first 3 books I read for 2013. I am proud of myself! Onto #4. I also just won another one and the publisher wants me to post a little review on their facebook page. I have never written a book review before. Wouldnt know what to say etc. Its a faith based non fiction book.

Hope everyone is doing well.

 

[robynslp]

How long post op for partial thyroidectomy will it take before I'm up to doing all my normal stuff? I have my surgery scheduled for 3/21 and have a 10k race on 4/6. My surgeon seems to think I should have no problems. I'm willing to walk that race. My bigger concern is I have been invited to join a relay team that will do 200 miles over the course of 36 hours. It will start 3 weeks post op. Doable? Crazy? I'm in pretty good shape and am going to be training like a beast up to my schedule.

 

[mrsklamc]

I wouldn't think recovery from a partial thyroidectomy would be too bad; The only reason I wasn't up and around right away was that I had what's called a radical neck dissection and I couldn't drive because the size of my incision meant I didn't have full range of motion.

 

[branv]

Well, no comfort from the Veracyte test. It came back today still suspicious for Hurthle Cell Neoplasm, which they state now makes me at a 40% risk of it being cancer.

I also saw my sweet baby Bumble yesterday for our 12 week scan. Jumping around, waving to us, bopping his/her big ol' head It's a little bittersweet today.

My doctor and OB agree that I shouldn't wait until after the pregnancy to have my thyroidectomy, simply b/c of the more aggressive nature of Hurthle Cell Carcinoma. The question now is whether to do a partial, to protect my hormones and parathyroids during pregnancy and hope it comes back negative after all. Or to find out if the possibility of having to do back-to-back surgeries to remove the second half (if it is cancer), is more of a risk to the baby than a total thyroidectomy. My doctor is going to consult with "the top thyroid doctor" at MD Anderson, as well as my perinatologist. Then we'll make a choice, and my surgery will probably be at the end of March @ 16 weeks gestation.

I know that there's still a very good chance that this will turn out to not be cancer. I'm adjusting to that. But right now, I'm just so sad and nervous that I have to do this surgery while pregnant. Even though the risk is small, it's still there. I know this is the right choice for all of us, but it's painful nonetheless. I'm working on finding that strength and peace I know I'm capable of, for all our sake.

Thanks for listening.

 

[luvmarypoppins]

Well, no comfort from the Veracyte test. It came back today still suspicious for Hurthle Cell Neoplasm, which they state now makes me at a 40% risk of it being cancer.

I also saw my sweet baby Bumble yesterday for our 12 week scan. Jumping around, waving to us, bopping his/her big ol' head It's a little bittersweet today.

My doctor and OB agree that I shouldn't wait until after the pregnancy to have my thyroidectomy, simply b/c of the more aggressive nature of Hurthle Cell Carcinoma. The question now is whether to do a partial, to protect my hormones and parathyroids during pregnancy and hope it comes back negative after all. Or to find out if the possibility of having to do back-to-back surgeries to remove the second half (if it is cancer), is more of a risk to the baby than a total thyroidectomy. My doctor is going to consult with "the top thyroid doctor" at MD Anderson, as well as my perinatologist. Then we'll make a choice, and my surgery will probably be at the end of March @ 16 weeks gestation.

I know that there's still a very good chance that this will turn out to not be cancer. I'm adjusting to that. But right now, I'm just so sad and nervous that I have to do this surgery while pregnant. Even though the risk is small, it's still there. I know this is the right choice for all of us, but it's painful nonetheless. I'm working on finding that strength and peace I know I'm capable of, for all our sake.

Thanks for listening.

Oh branv, I am so sorry the results were not conclusive. I am sure this is getting to you. I am glad that your dr. is consulting with the MD Anderson dr My friends friend in TX goes there and she gets excellent care and they are the best for sure.

Have you checked out the thyca website. It might help to see about others have gone through this. I know I did read 2 threads from 2 other girls who went through it but cant remember all the details.

Yes I think hurthle is one of the aggressive ones. My variant is aggressive too. But so far so good for me and God is so good with all I have been through.

I think I did read on that website that some had the thyroidectomy and then waited until after the birth to have the radiation etc.

I hope you get the answers you need to make an informed decision. Hang in there sweetie. If you had to have surgery would you go to MD Anderson or have it done closer to your home?

Honestly I think I would go there just for the sheer fact that they can do your pathology right there and they have seen lots of this stuff so their pathologists would probably be spot on etc.

I had to have several pathologist look at my slides and it took a while because none of them had seen my variant very often. My rad. onc. says she gets 1 or 2 patients a year with what I have and that is because they have to come from other hospitals to get the rai there, So basically I was like the 1 who had the rare one that year etc. And this is a large teaching hospital, so
if I were you I would want the best right off the bat etc.

Wishing you all the best. My thoughts and prayers are with you.

 

[branv]

Thank you so very much luvmarypoppins, it continues to mean a lot to have survivors like yourself remind me that even if it ends up being cancer, I can get through.

I also wanted to say I am so very sorry you keep getting the run around about your infusion. Even if it's beyond their control, it sounds like they are expecting you to be as cavalier as they are about your health. *sigh* You don't want anyone to experience what you do, but sometimes I can see how helpful it would be to swap shoes with people for just a day so they could have more understanding of your feelings at least.

And that is wonderful news about the little girl. Well, of course, not that she has this terrible thing in her brain, but that it is not cancer. It's amazing how hearing something like that, about someone I never even met, can lift your spirits so much. Although, again, I can't trust these pregnancy hormones lately because even commercials make me cry.

I had a wonderful morning. I actually woke up smiling, thinking about the baby. And I realized that every morning for two months, the first thing I've thought when I woke up was, "Is today the day I will find out <insert bad news>." I've spent all this time waiting for a phone call, but today I woke up and I already knew. And I know I still have to have surgery, and I still have to find out if it's cancer. But that's four weeks away. So today, I woke up, and I was a mom-to-be instead of a patient. I may not get this every day, but today is AMAZING.

 

[luvmarypoppins]

Well I had the infusion. Ds21 took me. He was happy to learn a lot from the infusion nurse. He asked about some vein finder thing and he said they didnt have one where he was so voila, she popped one out of the cabinet and was testing it on ds and herself while teaching him. They couldnt do me since I was infusing at the time.

A soon as she started I was getting a bad ringing in my L ear and that is finally better today. I was also very tired and thirsty. Last night I felt like I had a sore throat and chills so I took some tylenol. But today I even went to church, The only symptom I am having now is still being so tired. Well it sure is a lot better than having that horrid fever like last time.

Did anyone see Broke Burke on tv? I think she looked really good and I couldnt see the scar. She said she tried to explain things to her kids. She never mentioned rai Maybe she didnt need it? Well maybe in the future she could bre a good voice for thy ca etc. But just with the right info etc.

 

[branv]

No surgery for me for right now!!!!!

My ENT was finally able to consult with Mr. Big Thyroid Expert at MD Anderson (my way of admitting pregnancy brain can't seem to retain is name). He said he would NOT perform surgery on me (yet). He said he can't say, of course, it's NOT cancer, but that he thinks it's very likely it isn't. That though Hurthle cells are present, that in a nodule with extensive Hashimoto's damage (lymphocytes) like mine has, it is quite common to see them there, and a lot less likely to be malignant Hurthle. And given my age, the size of the nodule, etc, if it were, it would be unlikely to be moving aggressively right now.

So, we will do another sono in 3 months just to make sure something hasn't changed drastically. And if we do surgery, it will be after delivery.

I know this doesn't mean I'm in the clear. But it does make me feel better, more hopeful, and so so so so happy to avoid surgery while pregnant.

Just wanted to put this here -- there is so little information out there still about hurthle cell, and even less about it in pregnancy. I hope if someone comes along after me, who is looking for information, this will help them out.

I know I've said it a million times, but thanks for letting me vent. It's helped so much.

 

[mrsklamc]

Did you ladies know that there is a connection between thyroid issues and endometriosis?