The THYROID Thread

singing mom - glad your tests went well and hope you have a great time visiting your dd and great weather too I am sure!

Christine - hope your echo results were good

Well today was the endo appt. and things did not go as planned, sigh, should I expect otherwise lately, lol. Found the new office, they also said they are at the old office??? Its just two roads away. She also has a third office that is too far away. They are branching out for sure. The new office does not have a computer in the room so you have to go into another room for a conference. Also there is no place for the dr. to sit, crazy. She hopped up on the exam table while dh and I were in the chairs., um ok.

The endo news was not good. My bp was good, I gained weight, yes winter,, dont go out much. She said the one thyroid number was not good so she is decreasing my synthroid. I said what - I feel so tired and terrible already. Its just one less pill on sunday and then more blood work in two months to see how that is working out.

Worst news was that the one bad lymph node was still there. It is not popped out, just on the sonogram. She said it should have gone away after a year. This is troubling and concerning to her. She said I need a biopsy and she mentioned in this order - cancer, lymphoma or a reactive lymph node. So now on Monday I am getting a biopsy, not by her but by a new dr. they have., a female. She looks ok online. I told her anyway I dont want to go back to Dr. who almost killed me. I did ask what if it was cancer again, I mentioned alcohol ablation, she stared at me, I am not liking the way she is looking at me. She said I will send you to another surgeon, hmm,, I guess dr. who almost killed me is off the list now??? So we will biopsy and we wait.

She says she does not understand why the cancer number is good if the lymph node is bad and if it was lymphoma I should have night sweats. I told her dr. almost killed me actually did think I had lymphoma the lst time too.

I need some diversions this week end. A movie or some retail shopping therapy should do it. Dh hugged me twice but says I read too much into things, yeah right, its not him.
 
LMP--let's just hope for a reactive lymph node. That's probably the issue and I think they can last a long time. I know it's easy to think the worst.

My echo came out "normal." So, despite all the weird things going on with my heart, it is OK.

Hope everyone is doing well.
 
Geesh. When do you see the surgeon, LMP? Will keep you in my prayers.

Transvaginal and abdominal ultrasounds scheduled for this Thursday, along with annual mammo. Can't wait for Friday. @@
 


singing mom - best of luck with the testing

Christine - glad you got good echo results

Well I survived the biopsy. When I signed the papers it said - rule out thyroid cancer, gheesh. Nothing like seeing it again in your face. The new endo was nice. She does all the biopsies/fna's and also sees patients too. She explained everything to me and said she wanted to do 4 samples. I had to lay down, didnt like that. The surgeon when he did it just had me sit in a chair very still of course. She used the ultrasound to guide the needle. A nurse came in later to help.

Dh observed from the chair. He said generally all he saw was the drs. butt lol! he did see her take the samples out of the needles. She then asks me can she do a 5th sample because the needle kept getting clogged. I said o.k. yeah like what am I going to say. She said she wanted to give it her best shot. She said I was a real trooper. I only flinched once when it really hurt during her probing around in there. . I asked her if she would shake my neck, (the surgeon had done that). She said it wouldnt make a difference, um o.k. She said she had a hard time getting samples.

So she said she is sending it to an outside lab and I should have the results on Friday and the regular endo will call me. She said this lab only does head and neck and thyroid stuff and she has more faith in them then the univ. hosp. lab. um o.k.

She said based on the samples she got it could be a lipoma but really you have to wait for the results and they will look for any tg in the samples because that is def. the thy cancer indicator.

She said if the testing is inconclusive because of the sample quality I could be sent to a cyto lab? or the endo may just decide to keep watching it. We shall see.

I came home, took two tylenol rested alot until now and threw in a load of laundry. I am not cooking dinner. Dh is sweet. If I turn a certain way it is really sore (my neck).

I am praying and we will see what is in store.
 
Prayers for a good report, LMP. :tinker:

I really feel for you. I thought the biopsy was far worse than the actual thyroidectomy! I think it was because I was "awake" and I have this thing about "personal space". Nothing worse for me than a doctor smack in my face!
 


LMP, hope it all turns out well and glad to hear that she is sending it off to a specialty lab.
 
Mammo good. Trans vaginal ultrasound shows fibroids that, in the radiologist words, "No one would do anything about" Hmm. Guess I'll see what my gyno says after reading radiologist's report. He seemed to think that's not where my back pain is coming from, but I wonder. If I'm postmenopausal by a year, why would the fibroids even be there? Such fun.
 
singing mom - glad to hear your tests are over and the results sound encouraging and on a good path but wondering what your dr. will say about the pain. I have constant back pain. After 3 back surgeries and now all the osteoporosis I just try not to think about it.

Well I never heard from the endo today, sigh. Its going to be a long week end. I am hoping it is not like the post surgical biopsies where they said everyone wanted to look at it since it was so rare etc. I am praying and hope no news will be good news but we shall see.

Started by making the adrs for the trip. So far we are eating dinner at Kona (dh), Cape May (dh crab coma) Chefs (finally got to pick something I wanted), Brown Derby (Dh asked for this) Tusker House (only picked this to see if we can get a rivers of life fastpass, if not I might dump it and Be Our Guest (we will be eating right during the fireworks so I plan to see them earlier in the week). and of course dh has to eat breakfast at the Garden Grove at the Swan.

I am still checking out the hotel prices, gosh disney is so expensive even with an ap discount. I cant even get three days in a row, so far I am looking at one day at the beach club, 2 at the yacht club and then 3 days at the Swan, dh will have a fit changing rooms three times but we have done it before and I told him that is the breaks if you cant make a time commitment which he has to see about all his projects etc.
 
Well I called the dr. today since I havent heard anything.

She finally called me back and said the dreaded c word again unfortunately.

Dh and I are going to see her tomm. to discuss what she has in mind.

I figure it will only be 3 options
a. r side radical neck since I have the aggressive variant. I already brought up I dont want the one surgeon and I dont know about the other one who saved my life so we shall see.
b. rai only - I doubt that
3. external beam radiation, gosh I hope not
and lets throw in the lovely lid diet again. Well I always say I would not mind doing it in the warm weather because the fruits and veg are so much better choices. lol.

Of course I would rather have the surgery closer to home because I always have issues and ds works there so its like a no brainer but the surgeon quality is questionable.

Somehow I dont think we will be taking that trip to Disney and I dont think I will be able to teach this summer, such is life.

Say a prayer.
 
Well I called the dr. today since I havent heard anything.

She finally called me back and said the dreaded c word again unfortunately.

Dh and I are going to see her tomm. to discuss what she has in mind.

I figure it will only be 3 options
a. r side radical neck since I have the aggressive variant. I already brought up I dont want the one surgeon and I dont know about the other one who saved my life so we shall see.
b. rai only - I doubt that
3. external beam radiation, gosh I hope not
and lets throw in the lovely lid diet again. Well I always say I would not mind doing it in the warm weather because the fruits and veg are so much better choices. lol.

Of course I would rather have the surgery closer to home because I always have issues and ds works there so its like a no brainer but the surgeon quality is questionable.

Somehow I dont think we will be taking that trip to Disney and I dont think I will be able to teach this summer, such is life.

Say a prayer.
I'm so sorry to hear that. You're in my thoughts and saying prayers for you, of course! And please keep us posted on what the endo says. I hope that you can get the surgeon that you wanted, and the RAI and the diet are a huge pain. But you're right the fruits and veggies will be great, and don't forget the amazing salsa recipe from the online cookbook! You can also grill your itty bitty daily meat portions on the BBQ now, and or course, we usually lose a few pounds on the diet, too. Stay positive, and thinking good thoughts. And of course we are here for you!!
 
LMP, sorry to hear your news. I'm hoping you can get the right treatment worked out pretty quickly. What are you "hoping" they will do? Do you want to do surgery? If you don't have a good surgeon in your area, have you thought about traveling to a specialist? I know that's a pain....

I'll be thinking of you and please keep us posted.
 
Well the endo visit was enlightening

She said -
The lymph node is the place where the cancer is and the tg in it is like 256!! There is also another smaller lymph node. As usual my cancer is weird since the blood tests are normal but the biopsy is terrible. She feels it has been there for a year and thought at first it was a reactive one since I had the infection in my tooth, ear etc. It got smaller but got bigger after six months was up. So its not fast growing and more encapsulated maybe.

Monday is a PET scan. So good bye easter dinner. Hello maybe some eggs, bacon, salad and milk, weird but I dont want to eat just meat since I will be doing that on the LID shortly and 2 of the ds will prob not be here so maybe I will make them some italian food. I cant have carbs, sugar etc for my last meal sun night and have to drink 32 ounces of water monday morning. Of course water is not my favorite. She says she is concerned about it going to the bone and lung but she does have 2 80 yo patients with lung stuff that had it for the last 10 years. Of course I ask questions like these.

Then wed. I will be seeing the radiation oncologist. My old rad. onc. has moved to Israel. This is a new guy who took her place and she says I should like him. I said well I dont want someone who is an in your face type of person , I want more of the shoulder to cry on type. She says he is nice. I will look him up online.

Then of course LID for 2 weeks and thyrogen shots and then body scan. Depending if the scan is good there will still be a neck dissection just seeing if I am now non avid or not. If I have turned to being non avid then they will just do a neck dissection with no RAI. If the scan is good they will do RAI, oh fun!!

She agrees with me that surgeon who almost killed me is out of the question. She also feels surgeon who saved my life lacks the expertise to do this. She said she wouldnt even take her mother to this hosp. lol!!!! She mentioned 4 hospitals, all but one are in the city. Dh does not want to go to the city. The other hosp. I think she did her residency at and its also an hour away in the town that ds2 gf lives in. The endo also might be able to get me in there faster since she is familiar with the system there so to speak. She did not say that, I am just surmising that.

She said it will be a difficult surgery and I need someone who is very skilled. It will be the whole R neck dissection. Dh said - now you will have matching sides, ok dh.

I also mentioned m R leg hurt so she got me in the hosp. to do a doppler of where I had the blood clot last year. Ds3 was able to come down and he even went to lunch with us. The endo also said she will be very happy to speak to ds3 about any test result. He said mom, she really likes you because the drs. here never say that to anyone.

So goodbye chocolate easter bunny, jelly beans etc. Also I hope I am not figuring out the time line wrong but I hope I will not be on the LID for mothers day because that will stink big time, sigh. Bad enough easter is going out the window lol. But at least I will be in church and that is more important so I will focus on that.

And there is your thy update of the day peeps.

I will be lamenting my lid woes here for sure.
 
Well the endo visit was enlightening

She said it will be a difficult surgery and I need someone who is very skilled. It will be the whole R neck dissection. Dh said - now you will have matching sides, ok dh.
I'm sorry, I don't know where you live. But if you aren't far from Pennsylvania, the doctors here at UPenn are amazing when it comes to thyroid surgeries and cancer. I can't complain about my own surgery, but had I known that they were so much better prior to my surgery, I would have crossed state lines to do it.

You can do dark chocolate, homemade cinnamon and sugar coated plain air-popped popcorn, and some of Dr. Oetker's cookie and brownie mixes on the LID...not sure if you knew that.

Good luck and my thoughts and prayers are with you!
 
LMP, sounds like you've got some good information. I'm really glad to hear that it *sounds* to be confined to the lymph node. I think it's generally good news that your Tg has not started to elevate. I'm sure you're anxious to have the PET scan done. When I used to participate on the thyroid listserv, there were several ladies there with lung mets and it was okay. Of course, as to that, I think we're getting way ahead of ourselves but I know it's hard for the mind not to go there.

I'm not sure where you live and I know it's tough to go areas that you don't want to but I hope you go "to the city." Get the best surgeon. That is my one regret. Back in the 90s, when I had mine, there was no internet and I had no way to figure it out. I had a local surgeon (who was a lovely man) do mine and I think he did a good job, but he wasn't the most elegant surgeon and I have unusual scarring and scar tissue. Had I known that just up the road in Washington, DC there was THE BEST thyroid surgeons I would have been there in a heart beat, even though it certainly would have been a terrible inconvenience to my family.

Anyway it sounds like you are pretty upbeat because you have a path forward and that is sometimes really what you need to get through.
 
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LMP thank you for updating us

The other posters and you know more about the procedure than I do

I hope you can find your answers on where to have the surgery and pick the surgeon you connect with best!

Hugs
 
Well the PET scan is done. It was at the same place I go for the neck sonos. DH thought it was another bldg. It was not the greatest as I was so uncomfortable on the table. Mostly back pain that was made worse by laying on hard plastic in a certain place. I kept having to pee all the time. They said its normal. They said I did good. I tried to stay as still as possible. Felt a little dizzy getting up.

Dh was giving me a lecture on nuclear med and half lifes of doses, gheesh.

Yest in church I had a godwink. That is what the breast cancer thread girls call them. Right behind me was a teacher who used to be at the now closed school. I knew she went to Sloan Kettering and I asked her about her experience. She had endometrial or cervical cancer. She doesnt even go to our church, just showed up and just happened to sit behind me, godwink. I whispered to her and told her not to say anything that I might go there. She told me they promised her that she would have her own room and nurse. She said the room was so hot she couldnt breathe. She never saw a nurse the whole night long and she was suppose to stay there 2 days and they kicked her out after 1 day and that resulted in her going to the local ER here with an emergency. OK, all that news does not sit well with me at all. She said she did like the surgeon and the surgery was ok.

Also looked up and yes my endo did have her residency at the hosp. that is closest and also the head dr. there that she mentioned if I have the right one did a little fellowship at MD Anderson and of course that is the top thy ca center in the us.

So now I dont know if I am getting the PET results from the endo or will I get them from the rad. onc. I might call the endo tomm. I would rather hear bad news on the phone from her instead of hearing it from some dr. I am just meeting for the first time on wed.

Say a prayer!
 

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