Need Help With Thyroid Issue Please

I forgot to mention that after the ultrasound report came back that I had a large tumor on my right side and a smaller one on my left side, the doctor had made an apt for me to get it biopsied on August 1st. He never mentioned that yesterday on the phone.  I wonder if I still have that apt and if I should go ahead with it anyway?

 

On 7/25/2007 juwedo wrote:

I need an opinion from people who know about thyroid issues. I appreciate anyones help with this. Here is my story:

I went to my gp doc back on June 15th because I had a "lump in my throat" feeling. I was also choking a lot and had minor sore throat. She felt my thyroid, said it was fine and then ordered an x-ray and she said it showed a "narrowing" of my esophagus so she sent me to an ENT doc. July 28th was my apt with him. He said my thyroid was enlarged but ordered a barrium swallow test to check for anything in my esophagus. That turned out fine. Then on August 10th he had me have an ultrasound of my thyroid. He said the report was "confusing" but said it looked like I had a large tumor on my right side and a smaller one on my left side of my thyroid. Both of them were "solid" not cysts. But he wanted me to have a ct scan "to check for lymph and salivary gland involvement" because my salivary glands hurt and it feels like lightening bolts shooting through them sometimes and my  lymph nodes seem to be swollen. So I get a ct scan this past Monday. He called me last night and said there is a small 8mm "cyst" on my left side and we'd just recheck it in 6 months. I had to ask him about the large tumor on my right side (I feel the lump on my right side) and he said there is nothing there! He said it's totally clear. I told him again about my symtoms (voice change, feel a lump in my throat, choking a lot) and he went silent for a minute and said he'd just see me in 6 months for a recheck. I asked him again about the "cyst" he saw being he told me from the ultrasound that it wasn't a cyst, it was a solid mass and he said "well, it could be solid, it could be a cyst, I don't know". He totally brushed me off! So, this morning I plan on making an apt. with an Endo doc and getting a second opinion on this. I'm also going to the hospital to get my ct scan report, my ultrasound report and my barrium swallow report to look at myself. What do you all think of this? Am I doing the right thing? Oh, he also told me yesterday that he ordered the ct scan for me because he found the ultrasound report confusing! At first he had told me that he ordered it because he wanted to check for gland involvement and he was going to call the radiologist to ask him about the report! Anyone with an opinion with this? What else should I be doing about this? My throat really bothers me and he was really impatient with me when I asked him questions about the two different diagnosis' he gave me. Thanks in advance here for any opinions! I appreciate it!

E Komo Mai (Welcome)

Your on the right track of seeking a second opinion.  I'd bring all those reports to your endo doctor and go from there.  Don't let the doctor's brush you off.  This is all about you and it should be taken care of as soon as possible.  Find a doctor who has the compassion to listen to your concerns.  From my experience, I do not take any brush offs any more from any doctor.  There is always another doctor who will care for you in a compassionate way to get ALL your questions answered.

Ask your endo if you can get a MRI with and without contrast done.  I've had all the testing you've already done.  Keep going forward to get to the bottom of your discomfort.   

I am a two time thyroid cancer survivor and living every moment to the fullest.  I am happy to be alive!!!!!   

I don't want to scare you in any way but my first surgery was a result of a lump discovered by a friend with thyroid problems.  She noticed the lump and I went to her endo doctor.  The rest is history.  Long story short.  We tried in a 6 month period if I recall right to see if the lump would shrink.  Well, it didn't and then I had breathing problems of it crushing my airway.  My TT was in 1995.  So, since then I've had a handful of doctors watching over me.  It isn't so bad once you except it   

If you get a chance, please read my story on this Cancer Compass website, page 9 , "Cancer Again! Now What?" dated Jan '2007.

May you find comfort that I will say a prayer for you that you get ALL your questions answered and health taken care of as soon as possible.  Good luck and best wishes.

May God Bless You !!

Aloha, Paulette  

 

 

On 7/25/2007 juwedo wrote:

I forgot to mention that after the ultrasound report came back that I had a large tumor on my right side and a smaller one on my left side, the doctor had made an apt for me to get it biopsied on August 1st. He never mentioned that yesterday on the phone.  I wonder if I still have that apt and if I should go ahead with it anyway?

 

I am a three time thyroid cancer patient...Yes anytime you can get someone to biopsy...do it. It is the best way to tell what is in there. And don't allow anyone to brush you  off .. keep going to dr's until you get someone to listen. They brushed mine off taking nine months to remove it...by the time they did it had gone into the neck tissue. That is why mine keeps coming back. Once it is outside of the capsule it is hard to contain..........be very persistant until you get the help you need and deserve.

Thank you both for your opinions and advice! I appreciate that!
I picked up my ultrasound report and my ct report today. Here is what they say..

Ultrasound:

There is a focal hypoechoic solid appearing nodule in the lower right thyroid gland measuring 3.6 x 4.4 x 9.4 cm. This is a nonspecific in the lower pole on the left lobe of the thyroid gland. There is a 1.1 x 1.6 x 2 cm hypoechoic likely mixed solid and cystic nodule.

CT scan: There is a solitary 8 mm in diameter low density lesion seen in the left lobe of the thyroid.

 

Can anyone interpret this for me at all? It makes no sense to me.

You're doing the right thing.  Go to a specialist who deals with thyroid and throat problems, an endocrinologist.  Your smart in gathering all your reports, take them with you and pursue it until you are satisifed with the information you are given.  It is too easy to be treated like just another number.  Sounds like you doctor is confused and that is all the more reason he should have referred you to a specialist.  Good luck! 

I just read your ultrasound report. You definitely need to follow up on this. A biopsy will give you a definite answer or they may just suggest surgery. The first doctor is incompetent.  Pursue this until you know exactly what is going on!

Everyone, thanks so much for your advice! I'm taking it to heart. My apt to see the endo doc isn't until October 2nd! It seems so very far away.

Paulette, if you are still with me here, can you explain to me the purpose of the mri with and without contrast as you suggested? I'll have to mention that to the endo when I see him but I'd like to have more information as to why it should be done. And thank you for your prayers. Yes, I take comfort in them.

You've all been through so much and I value your opinions per these things!

Take care everyone, thanks again.

My Dad just died of esophageal cancer. HE WAS MISDIAGNOSED WITH THYROID CANCER FIRST!!!   I don't mean to scare you, but he had a bit of difficulty swallowing and a bit of weight loss - when he went to his primary, he felt the enlarged thyroid and sent him to endocrinologist.  The endo found a large mass in one side and smaller cyst in the other.  She did a nuclear ultrasound and biopsied the mass.  It came back as papillary thyroid cancer.  She also suspected some node involvement, but said not to worry, they'd take them out and take the thyroid out.  They did one other test and found a spot in the lung, but again felt it was papillary and not to worry.  All was good, they said they'd do surgery, then a little radio active iodine and he'd be fine.  The surgeon then wanted the nodes biopsied to determine which ones to take.  Well, they came back from pathology stating the cancer was not papillary and they weren't sure what it was, but knew it was not well differentiated cells and it was VERY aggressive.  We then switched to Johns Hopkins (ranked 3rd in the nation) - their top guy said papillary, no worries, however, by that time only a few short weeks later, my Dad had lost about 20 lbs, and could barely swallow even ensure or soap.  The Hopkins guy sent everything to his pathologists who came back with the same as the other place, NOT papillary thyroid although the cells had "papillary tendenceies" again, they didn't know what cancer it was, but knew it was aggressive.  My Dad then needed a gtube (feeding tube in his stomach because he couldn't even swallow his own saliva at that point because of course another couple of weeks had gone by while we waited for pathology results).  Hopkins did a PET scan at the same time they did the feeding tube and the doc became suspicious of the esophagus.  Finally, Hopkins ordered an endoscopy because he wanted to see the esophagus.  the endoscopist could only see the top part of the esophagus (he couldnt' get down the throat because of the tumors) BUT, the top of the esophagus was fine.  We were elated and the doc scheduled his THYROIDECTOMY - then at the last minute, the doc said "no, I need to see the lower part of the esophagus" - well, we had to do another endoscopy with a smaller scope - the results of that confirmed our worst nightmare - HE HAD STAGE IV ESOPHAGEAL CANCER.  No surgery.  The doctor then said, the surgery wouldn't have helped him to swallow anyway, because it was the esophagus giving him the problem (lower portion), and NOT the massive thyroid mass!  Now, he should have known where the thryoid tumor was located the first visit and that should have alerted him to look elsewhere if he was sure the tumor in the thyroid was positioned in a way that it was not the cause of my Dad's swallowing problems.  Well, my Dad had to have a trach because the tumors were paralyzing his vocal chords.  Finally, he had his first round of chemo at the end of may and basically, it killed him.  All his intestines, colin, liver died off.  I consider it divine intervention so he did not have to endure the end stage of that horrible cancer.  My Dad went to the Doc the end of Feb. and died June 4th.  I truly feel the right tests WERE NOT done in a timely manner!!  Not that he was likely to live, but, he may have been able to avoid the trach, the feeding tube and possibly had a better chance of some quality time with chemo.   My advice to you is this - get an endoscopy ASAP to absolutely rule out esophageal cancer as the primary.  Do you have node involvement?  If so, make sure they are biopsied.  Make sure they do a PET Scan.  Ask specifically where the tumor is and are they CERTAIN the tumor is positioned in a manner that is conducive with your swallowing problems?  My dad never smoked, rarely drank and did not have acid reflux issues (although in the younger days he took TUMS sometimes for heartburn).  Everyone was lax because there was a tumor in the thyroid gland and my Dad didn't have any other symptoms to point to esophageal.  Good luck - chances are it's thyroid cancer, hopefully papillary, but, don't trust your doctors - you are your best advocate!!!

I am so very very sorry to hear about your father! Your family must be devastated! Your story truly breaks my heart.

Thanks for your encouragement about this whole ordeal. I have not had any tests done except for a ct scan, an ultrasound and a barrium x-ray. The barrium x-ray saw no lesions in the esophagus. Hopefully that was all done accurately unlike my ct scan where obviously someone missed something. No, I have not done a PET scan and I'll speak to my Endo about that once I finally get in to see him about it.

I talked to a Patient Advocate this morning from the hospital and she is trying to get my apt for my apt with the Endo pushed up (right now it sits at October 2nd!). I also found out through her that the ENT doctor who isn't doing anything about these tumors is an independant doctor and isn't employed by the hospital...he also owns financial interest in the center he is part of (which is part of the hospital). What on earth can someone due about his negligence then?!! The patient advocate also told me to go ahead and have the biopsy that is scheduled for August 1st because it's obvious I need it...and that she is totally convinced I need a second opinion on this whole matter. I'm glad I called her and I thank everyone for their encouragement. We really do need to take matters into our own hands!! Isn't that just sad?