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hilery79 04-11-2005 09:46 PM

Worried...trouble swallowing
 
I had my thyroid removed in 03 due to cancer. I've undergone 2 RAI treatments and will be having another scan in August to see if there is still remaining tissue.
Lately, I've been having some trouble swallowing and it seems to be getting worse. When I swallow...my throat feels really tight. I don't know how else to describe it. Also, sometimes when I take a drink it feels like there is something caught in my throat. I saw my PCP about this and he looked at my throat...then said it was probably muscle tension due to anxiety. :rolleyes: (This is his answer for EVERYTHING) I could probably go in doubled over in pain and he would prescribe me more valium and say "it's just your anxiety, hun". :rolleyes: (Can you tell I'm just a little frusterated with this doc?)LOL

Anyway, I know thyroid cancer is very slow growing and it's probably very unlikely that my difficulty swallowing is due to cancer regrowth. ...Especially since there was very little tissue left at my last scan and I had another full blown treatment following it. I was wondering if this could be related to scar tissue from my surgeries. Is that possible? Has anyone else experienced difficulty swallowing post-thyroid cancer?
Thanks~
Hilery

Benzi 04-12-2005 08:06 AM

Re: Worried...trouble swallowing
 
Hilery so sorry you feel so bad and sorry your post slipped by me. When was your last tg? When was your last WBS? I know I should know this but its easier to ask you then look up our old posts. I think you have every right to be concerned and need another Tg unless you have had one in the last 2 months. I too am going through the same thing as you know and am now about 10 days (I hope) away from a WBS. I wonder if you could go ahead and ask for a early WBS, its just too much worry to wait until August. On a lighter note it could be from the RAI I have heard this can happen although it did not happen to me. How is your voice? If you are getting hoarse, suddenly, it would be a good idea to at least get a Tg done.

hilery79 04-12-2005 08:34 AM

Re: Worried...trouble swallowing
 
Thanks for your reply, benzi. :)
My last scan was in Aug(04). I think my last tg was around October...it was elevated, but they didn't seem too concerned. My voice has been hoarse off and on. Right now it sounds fine, but about a week ago I could barely talk. I think I will go ahead and call my Rad. Oncologist's office to see if they'll check my Tg.

Good luck with your scan. Are they planning on another full RAI treatment? My Dr. told me to be prepared for a 3rd treatment, but I really hope I won't need one.

Best wishes and let me know how everything goes with your scan. You're in my prayers. :angel:

Benzi 04-12-2005 08:46 AM

Re: Worried...trouble swallowing
 
Looks like I may get both surgery and RAI treatment. Fun huh? Please do have the Tg tested again, I hope it comes back too low to count. What are they keeping your TSH at? I would want that tested also if it has not been done lately. Do you know I have never ever had a Tg done? The last Endo ordered one, the lab forgot to do it and the Endo did not reorder it. Agggghhhh it irritates me so much. I have orders now for one on Friday hope the lab gets it right this time. I am thinking of adding a addendem to my lab request telling them how upset I am with them for not doing it right the last time. This caused me to have to go hypo twice now in 10 weeks. I am very irritated. My voice has been hoarse now for over a year and had trouble swallowing along with it (hypo or not) I am pretty disturbed right now with all Dr's. Oh well trying to find a bright side is hard sometimes. PS: Sonogram came back and it was not good! Looks like lymph node involvement.

hilery79 04-12-2005 09:51 PM

Re: Worried...trouble swallowing
 
Benzi, I am so sorry to hear you might have to go through another surgery on top of the RAI. You have to be so frusterated with your Dr.'s. I can't imagine. I can't believe they haven't been checking your Tg on a regular basis. I would definitely let the lab know that you're upset about the mix up last time. I've had that happen with different lab tests too many times to count. The last time it happened...it was actually my daughter's CBC. They said it had gotten lost, so we decided to wait until the following day to have her Dr. do her blood work again. Come to find out the next morning...both her platelets and rbc's were dangerously low. She had to be taken to the nearest Children's Hospital because she was at risk for spontaneous intracranial bleeding. Needless to say, the lab tech got an earful from me.

They're keeping my TSH below 0.5...the last time I had it checked it was completely undetectable. So, they lowered my dose back to 112. I'm still having a lot of hyper symptoms, but I know that it's important to keep my tsh suppressed.

Hang in there. I know that it's hard to think positively right now, but try to be as optimistic as possible. Just remember how curable this type of cancer is. The recurrence rate can be high, but it is still highly treatable. I have to keep telling myself this over and over. :) Please keep us updated. I'll keep you in my thoughts and prayers!

KCThy 04-12-2005 10:09 PM

Re: Worried...trouble swallowing
 
Hi Benzi & Hilery,

I just want you to know I think of you often! You have been such great support and I wish I could somehow offer you the same kind words of your wisdom & advice (pretty new to this).

Just know that I'm thinking of you, thankful for you and praying for absolute good health for you! You should know how much you are appreciated, valued and thought of.

Through all this, all I know is, it sucks, but keep a level head and try your best to smile! Like my kids say so well... Peace out (with the most sincere meaning of the words). Godspeed or whatever keeps you going!

kaciii 04-13-2005 04:54 AM

Re: Worried...trouble swallowing
 
Wow, I'm sorry Benzi that you are going through this again! We will keep you in our prayers here in FLorida and you also Hilery.

Benzi 04-13-2005 08:34 AM

Re: Worried...trouble swallowing
 
KcThy and kaciii Thanks for your support and kind words. It means a lot to me to hear them. Hil hope you read this : What did Dr's office say? Can you move the scans up or at least get the Tg? I have a dumb question: Do you know if they always do a tracer dose of RAI before the WBS? Was yours done that way? The one and only WBS I had was so long ago that, if they did a tracer dose, I really do not remember it! LOL I am having trouble remembering a lot of things right now. Woke up this morning and my eyes are all swelled up so I know I am getting to where I need to be for scan. LOL when they first start swelling I actually look BETTER, the swelling fills in all my wrinkles but the next day, wellllll phooy then they just look swelled up.

hilery79 04-13-2005 09:19 AM

Re: Worried...trouble swallowing
 
Yes, they always do a tracer dose of RAI before the WBS. In your case...since they know you're going to need a treatment...they might go ahead and give you the full treatment dose and then do the scan a couple days later. That's what they did with me the first time...since I had to have the treatment no matter what. Then, the 2nd time I had the tracer dose first since they weren't sure if I would need another full blown treatment.

I talked to my Rad onc's nurse and she said they would add the Tg on to my TSH labs in a couple weeks. She said they would probably still wait until Aug. to do the WBS.

I hated the swelling! I used to wake up with my eyes completely swollen shut...it was awful! Do you feel achey all over? This was another hypo symptom I couldn't stand. My whole body would ache like I had the flu.

Take care!

mintchocolate 04-13-2005 09:27 AM

Re: Worried...trouble swallowing
 
Trouble swallowing, that got my attention, since I just went through trouble swallowing with my 15 year old son and it was something very simple.

I had his thyroid checked, a barium swallow, and a cookie swallow in which they make him eat food impregnated with barium to see what happens in his throat. Everything came back negative.

The throat specialist ordered an anti-acid something like prilosec and the problem was gone!

According to the doctor who did the cookie swallow test, if there is a little of acid reflux there is a nerve, that triggers a reaction in the throat and it feels like there is something stuck in the throat and he can't swallow anything. This reaction is caused to protect the windpipe from getting anything in when the person throws up, in his case it gets triggered half way through a meal and an anti-acit takes care of the problem.

Mintchoc

Benzi 04-13-2005 09:34 AM

Re: Worried...trouble swallowing
 
Thanks Hil I should have known that, still waiting however on the Rad dept of the hospital to call me. I was just trying to decide if I need to go twice as its 85 miles away and I need someone to drive me there. Good I am glad you are getting Tg done it will ease your worries. We hope. got to go and shut this dumb computer down its going nuts.

hilery79 04-13-2005 10:15 AM

Re: Worried...trouble swallowing
 
Benzi,
Are you able to feel any swollen lymph nodes in your neck? I've has a lymph node under my chin that has been enlarged for several months. My PCP felt it months ago and said it was most likely reactive. He said that the fact it is smooth and easily moves makes it less suspicious. Well, I left it alone for a long time...kind of forgot about it and then I felt it today and I really think it is just a little bit bigger. It's still smooth and moves easily, but it is rather firm. I know that thyroid cancer involving the lymph nodes would drain down and wouldn't cause a lymph node to swell up under my chin, but I'm still a little worried. I've also been losing weight lately, but I assumed that was due to being hyperthyroid. Now, I'm worrying about other types of cancer. Gosh, I really do sound like a hypochondriac don't I!? lol

Benzi 04-13-2005 11:32 AM

Re: Worried...trouble swallowing
 
Not a hypochondriac just careful. After what you have been through you have every reason to be careful. The sonogram I had done is what is making the Endo think my cancer is back, it showed hypoechoic lesions in my neck. These are described as lymph nodes. They are very enlarged (any lymph node over 1x3mm is considered enlarged in the neck) these are about 9x16mm so over 1cm. Now there is still a small chance that they are reactive lymph nodes, but not much because of my voice being almost gone now. It is more likely to be a spread of the papillary cancer and could be that they are not even lymph nodes, as papillary cancer is the one cancer that can mimic a lymph node on a ultrasound. Lucky us! I have researched this pretty well and if you mean right under your chin (like within an inch) you are probably right and they are just reactive, you have to always take into consideration that thyroid cancer can (barely possible) spread that high but is usually a sign of salivary gland cancer or other problems like oral cancer and sometimes Lymphoma. They can tell somewhat by your history, if these have been swollen since your last RAI, it may be that the RAI damaged some lymph nodes. Papillary thyroid cancer almost always affects the internal jugular veins (thats where mine are) but can cause a reactive node in the area you describe. Feel along your jugular vein and carotid artery that is where those lymph nodes are. Your Dr. is right about the movable node, that is a very good sign for reactive nodes. I have read over and over that ANY lymph node that stays enlarged for more than 6 weeks should be investigated. I would try not to worry too much until your Tg comes back. If it is over 2 I would ask for WBS early. Hope I am not scaring you. I do not mean to just want to give you what facts I have at my disposal. The criteria for further investigation of a lymph node is size, location, movability. length of time swollen, texture, and roundness (that is a ratio LxW) other critera is hoarseness, sore throat (not virus related), trouble swallowing. If you have any of those 3 things along with a swollen node for over 6 weeks it should be checked out. A sonogram might be enough but a WBS is better!

hilery79 04-13-2005 12:10 PM

Re: Worried...trouble swallowing
 
Thanks, benzi. I'm not really sure about the size of the lymph node. I would guess it's atleast 1.5-2 cm across. It feels a little smaller than a marble. Do reactive nodes eventually go down or can they stay permanantly enlarged? I don't know if I've mentioned this before, but I also have an "enlarged thymus" that showed up on a CT scan over a year ago. The rad report said "possible thymoma or lymphoma", but my Dr. insisted that my thymus just never shrunk down. I think I'm going to go to another Dr. to get a 2nd opinion on all of this to ease my mind. All of this combined with my difficulty swallowing has really got my worried.

I really hope the nodes found on your sonogram turn out to be reactive. So, are they going to do the WBS and then go from there? I know you mentioned you might have to go through another surgery, but hopefully the RAI alone will take care of it...if it is indeed thyroid cancer recurrence.

Thanks again

Benzi 04-14-2005 07:29 AM

Re: Worried...trouble swallowing
 
Gee now I am really beginning to wonder. As you know the Thymus is a lymph gland of sorts. When I had my TT they found Thymus tissue in my neck. Etopic Thymus, I looked it up and its super rare. My etopic thymus was benign. I have a constant heaviness in my chest in that location though that has been there for years though. It never has shown up as large on a CT (course they were not looking for that) If I were you I think I might be concerned because an enlarged thymus can cause reactive nodes in the neck. I would go for second opinion armed with all the labs and scans you have had lately. By the way that lymph node is pretty big and reactive node usually go up and down and are not usually round they are elipitical (like a cresent moon) some are oval but hardly ever round. I am hoping that you are aware that because of the RAI you have rcvd. you and I are more at risk for lymphoma. Yes WBS late next week and then either RAI or surgery hopefully RAI only.

Benzi 04-14-2005 07:32 AM

Re: Worried...trouble swallowing
 
Forgot to add that a lymph node damaged by RAI probably will not go down.

hilery79 04-14-2005 10:54 AM

Re: Worried...trouble swallowing
 
Gosh, now I'm really worried. My thymic mass was actually found before I found out I had thyroid cancer. I just found the report and it was done in June 2003. I would think that if it was a malignant thymoma...I would have a lot more symptoms by now. I have had the chest heaviness for almost 2 years now...that's why they did the CT scan in the first place. I'm also short of breath a lot, but of course my Dr. says that is anxiety related.

By the way, I went back to my Dr. yesterday afternoon(same one) and he still insists the node is nothing. He said that it will probably stay permanantly enlarged because I messed with it too much(which I did do when I first noticed it). I guess it's been almost an entire year since I first noticed it...I first mentioned it to him in June 04(according to my chart). He said that it would have grown a lot more by now if it were malignant. Unfortunately, he didn't make me feel any better. I know that some types of lymphomas are very slow growing...So, I'm planning on going to a walk-in clinic tomorrow for another opinion.

Benzi 04-14-2005 11:09 AM

Re: Worried...trouble swallowing
 
I would if I were you! I am not sure how much they can help you but its worth a try. Be sure to mention what the CAT scan showed tell them about the chest heaviness and lymph nodes and chronic sore throat and shortness of breath. I am beginning to have a problem with your Dr. myself. I would think he could at least do a chest x-ray to ease your mind. I really hope I am not scaring you but with your history (and elevated tg) it pays to be safe.

wxKathy2 05-08-2005 09:05 PM

Re: Worried...trouble swallowing
 
Hello Benzi and Hilery,
I hope you don't mind my replying/imposing to your posts from April - but I'm going through something kinda of similar and hoped you could tell me how you are doing - I have thyroid nodules that have never been biospsied and I am being treated with synthroid/cytomel. Nevertheless, I have gone from one nodule 1.5 yrs ago to 7 as of Jan 05. Last week they did a chest CT because I have this choking feeling/lump in the throat and they didn't think my nodules were causing it (largest nodule 16 mm). The chest CY radiology report came back like yours: "Anterior mediastinal mass. possible thymoma or lymphoma...thymic tissue and thyroid ectopic tissue less likely". I am 40, so not likely thymic tissue. I have had swollen lymph nodes in my neck since Jan too, but just figured it was sinuses and didn't report them to anyone. I will see an oncologist tomorrow. (what should I ask?) My endo thinks the thyroid shrunk (ultrasound) on Tues so he is not worried that it is lmyphoma. I think maybe it shrunk too, but wonder if it was the iodine in the CT scans (is that crazy?). I had two CT scans in two weeks...

Please tell me how you are doing and what they did about the "thymus tissue".....I would really appreciate your experience as people who have travelled this road - and Benzi thanks for all your earlier replies....
All my best wishes and prayers to you both,
Kathy

hilery79 05-08-2005 10:34 PM

Re: Worried...trouble swallowing
 
Hi Kathy,
I'm sorry you're going through all of this. I finally had another chest CT done a couple weeks ago and the "anterior mediastinal" mass was still there, but it hadn't grown any since my scan in June of 2003. So, my Dr. says it's safe to assume it's benign. On the actual radiology report.. it said it was most likely thymic hyperplasia(in other words...just an overgrowth of thymic tissue). What a relief! However, I do have a couple lymph nodes in my neck that have been enlarged for awhile. One of them is about 2cm in size. I had an ultrasound done of the bigger one and I just found out they really didn't get a good image of the node. So, I'm hoping to have a biopsy done next. My Dr. doesn't feel they're related to my thyroid cancer because of their location. I, too, am worried about lymphoma because of some of my other symptoms...weight loss, night sweats, and low grade fever that comes and goes.

Good luck with your Oncologist appt. tomorrow. I'm sure they'll probably want to biopsy one of your lymph nodes. As far as the mediastinal mass...if your lymph node turns out to be ok(reactive), they'll probably take a watch and see approach to make sure it doesn't change. I had asked my Dr. about doing a biopsy of the thymic mass(before I knew it hadn't grown) and he said it would be difficult because of the location.

Please let us know how your appointment goes tomorrow. I'll keep you in my prayers. :angel:
Hilery


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