pet/ct scan

kikix5
kikix5 Member Posts: 2
edited April 2022 in Thyroid Cancer #1

I am 45 and I have had a few nodules that have been being watched the last 3 yrs, they are cold per nuc med scan. I  had a FNA 3 yrs ago, biopsy results were   

the 1.4 cm showed specimen consists of sheets and clusters of uniform follicular cells, some with hurthle cell change, numerous hemosiderin laden macrophages and colloid. cytologic findings are consistent w degenerating colloid nodule.

the 2nd 1.5 cm showed specimen consists of sheets and clusters of uniform follicular cells, some with hurthle cell change, hemosiderin laden macrophages and abundant colloid- cytologic findings are consistent w degenerating colloid nodule.

I have been going back every year for my ultrasound and this year, one of them grew and it was biopsied again, This time, came back with only the words "suspision for hurthle cell lesion" I am having a TT on the 9th.

I have been having major pain in my lower leg with weird sensations, not pins and needles but more like a goose bumpy feeling with nothing there. The pain sometimes is so bad that I am in tears, others, its bearable but you know that its there.. I have the pain at rest and activity.  Had nerve test that was Negative,mri of back negative, then had one of lower leg and knee (since a lot of my pain is there and some in the thigh) lower leg was neg but they saw some changes in marrow in my distal fibula. (the tech tried to go up as high as she could for a knee mri) 

so I had a whole body pet scan with cat scan of neck and head  just yesterday now waiting on the results. The tech at first said, you should hear something late tuesday night or wed at the lastest. but when I got done, he said,you should hear something tonight or tomorrow morning.. So now I am even more worried Did he see something, or see nothing lol

 Did anyone have any pain with bone mets, I guess thats what I am afraid of..

I have also had all normal TSH and other lab work,  but my wbc I noticed is usually 6.5- 8.5 with normals being 4.4-11.3, my last one a week ago was only 5.3..  when I aske the Drs nurse about hashimoto's and she was like, well, it doesn't really matter since you are getting it out,

I'm hoping to know something today..

 

Thanks so much!

 

 

Comments

  • Baldy
    Baldy Member Posts: 243
    #2
    Techs talking during scans

    You can't go by what the techs are saying while they're doing the scans.  I'm two years post total thyroidectomy and I've had two sonograms now and both have showed suspicious nodes in my right neck.  During the last sonogram the techs were talking like they were finding suspicious nodes in my left neck too.  So ... once they're done and I'm sitting there waiting for them to make a copy of the sonogram, I'm freaking and saying to myself the stuff is in my left neck now!  When I talked to the doctor the next night, there was nothing suspicious in my left neck, the techs didn't know what they were talking about!!!

    Try and calm down (I know, easier said than done) and wait for the doctor to call.

    Alan

  • kikix5
    kikix5 Member Posts: 2
    #3
    Baldy said:

    Techs talking during scans

    You can't go by what the techs are saying while they're doing the scans.  I'm two years post total thyroidectomy and I've had two sonograms now and both have showed suspicious nodes in my right neck.  During the last sonogram the techs were talking like they were finding suspicious nodes in my left neck too.  So ... once they're done and I'm sitting there waiting for them to make a copy of the sonogram, I'm freaking and saying to myself the stuff is in my left neck now!  When I talked to the doctor the next night, there was nothing suspicious in my left neck, the techs didn't know what they were talking about!!!

    Try and calm down (I know, easier said than done) and wait for the doctor to call.

    Alan

    Pet/catscan results

    Thank you Alan.

     

    I have my results but still waiting on the Dr. to call me back with them.. seems they are a bit slow in that department. (this is my orthopedic that I am waiting on to call)

     

    My results of my PET_CT scan, I had some mild increased FDG activity is seen in both thyroid lobes, more focal on the right and diffused on the left. Direct correlation with site of thyroid nodules cannot be made on the nonenhanced CT  no hypermetabolic cervical lymphadenopathy is demonstrated.

    No suspicous hypermetabolic foci to suggest metastasis. no abnormal activity to explain the patients left tibia/fibula pin.

    Mild increase dhypermetabolic activity in the thyroid as above. more focal on the right, this may correlate with the patients lesion. although direct correlation canot be made on the unenhanced ct

     

    I do have the disc, and its weird as the left and right legs don't look the same, like in the knee area.. but I guess I'll wait longer for the call..

     

    With the uptake of the fluorodeoxyglucose,  I would assume that the "suspision of hurthle cell lesion" is cancer :(

     

     

  • Baldy
    Baldy Member Posts: 243
    #4
    kikix5 said:

    Pet/catscan results

    Thank you Alan.

     

    I have my results but still waiting on the Dr. to call me back with them.. seems they are a bit slow in that department. (this is my orthopedic that I am waiting on to call)

     

    My results of my PET_CT scan, I had some mild increased FDG activity is seen in both thyroid lobes, more focal on the right and diffused on the left. Direct correlation with site of thyroid nodules cannot be made on the nonenhanced CT  no hypermetabolic cervical lymphadenopathy is demonstrated.

    No suspicous hypermetabolic foci to suggest metastasis. no abnormal activity to explain the patients left tibia/fibula pin.

    Mild increase dhypermetabolic activity in the thyroid as above. more focal on the right, this may correlate with the patients lesion. although direct correlation canot be made on the unenhanced ct

     

    I do have the disc, and its weird as the left and right legs don't look the same, like in the knee area.. but I guess I'll wait longer for the call..

     

    With the uptake of the fluorodeoxyglucose,  I would assume that the "suspision of hurthle cell lesion" is cancer :(

     

     

    Hurtle Cell Lesion

    From what I just found Googling, it doesn't necessarily mean cancer.  From what I read, a definate diagnosis of hurtle cell lesion means cancer in about 1 in 3 cases.  But it sounds like they aren't even sure that you have this, so you're chances should be better, perhaps much better.

    Hang in there!

    Alan

  • Rurh
    Rurh Member Posts: 2 Member
    #5

    So I’m 57 had thyroidectomy 2021. Came back hurtle cell carcinoma. Did not do RAI because so many sites said hurtle cell does not respond to it . Now have couple lymph nodes on either side of neck involved have PET scan next week . I am self pay and curious if anyone else has any info or suggestions about next steps . I have never had any illnesses other than migraines which went away for the most part years ago. Are there any natural diets or options to help?

  • Diane5Diane
    Diane5Diane Member Posts: 1 *
    #6

    Hello, I am 52 and recovering from total thyroidectomy due to Follicular variant of papillary cancer. 3cm tumor on the right side and 1m on the left. Anybody having a hard time recovering from the surgery? I continue to have trouble swallowing, my entire neck feels like it is being pulled downward just to swallow. Sharp pains in my neck as well. This is about 1 month post op. I am wondering when it is where I might start to feel better. Also having night sweats, heart palpitations. Could also be just that I am freaking out I suppose. Could anybody share the amount of time when they started to feel better after having a thyroidectomy?

    I also have the PAX8 mutation, this is terrifying to me. Also wondering if anybody else has had this mutation along with the thyroid cancer.

  • Rurh
    Rurh Member Posts: 2 Member
    #7

    Hi mine was all on left side but they removed most all of mine on both sides. I did have some trouble w swallowing and it’s almost a year and every now and then I feel like my esophagus collapses for a split second and I cough like crazy then I’m good to go. Also, muscles may have been cut or moved around as they had to in my case but I just had discomfort. Could be your pain tolerance isn’t as high as some and it’s been a short time also. Even today I feel pressure in the front of my neck. It takes time for everything to migrate back into place and heal.

    the night sweats and heart palp are from No thyroid but I would contact your physician . My mine was hurtle cell and I’m truly sorry you are going thru this. I hope you have family to be there for you.

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