This is so bizarre .. please read

tpiro
tpiro Member Posts: 6 Member
in Thyroid Cancer #1

This is so bizarre .. Had a PET Scan performed on my lungs and they turned out ok.. lucky b/c of so many years smoking. However, the doc said they were ok just a little junk nodule at lower lobe so we had a biopsy FNA done and it came back negative. Oh well and good.. right? .. NOT!. So the doc says my lungs are so so ok and negative biopsy results BUT!, there is activity noticed around your Thyroid. So, he sends me to another doc and they say.. let’s do FNA biopsy. Both sides b/c Left side was 2.8cm and Right side was 1.5cm. Waited almost 2 weeks and Left side came back negative but Right side came back inconclusive. So off that sample went to ThyroSeq for molecular testing. Waited 3 weeks for that and it came back NEGATIVE. Ok, now I’m really wondering about this. So I meet with the doc, she wants to remove the Thyroid.. why? Because she thinks more than likely it is cancerous because of the activity of PET Scan shows intensity/brightness of Left side. She can send it out to lab and they can slice and dice and the results can “possibly” come back negative.. oh boy.. I don’t know what to do here.  I can use some input.. really need someone’s help, advise, do or don’t or anything for that matter. Should I let her chop away.. get another biopsy.. do half removal? I am lost.

Comments

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    #2

    Hi tpiro sorry you are going through this. I don't have any answers but wanted to wish you well. I had PTC that was discovered by a PET scan where a nodule in my thyroid lit up. It was cancer in my case so the whole thyroid was removed. I hope you get wisdom to know the next steps.

  • tpiro
    tpiro Member Posts: 6 Member
    #3

    Sorry Deanie0916.I think I left this msg on another area here.... I do appreciate the feedback. With your yes it did come back positive.. if I'm reading you correctly. But with mine they all came back Negative.. I wish it did come back Positive.. then it would have be a no brainer.. but for a doctor to guess it is Cancer by PET SUV level.. not sure. There has been cases where a PET SUV level came back with Benign areas in Thyroid. Ok.. nonetheless.. Please tell me your experience with your Thyroid out.. is it difficult balancing the medication.. do you NOT feel like yourself anymore without your Thyroid... tell me about what is has been like.. please I would like to know if you don't mind.

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    #4
    https://csn.cancer.org/discussion/comment/1692702#Comment_1692702

    Hi I just saw this. I hope you've been able to move forward with a decision. I wonder if there are other reasons that the area showed activity. That is strange. Well the surgery itself was outpatient. I have a problem with my right vocal cord being stunned, not moving after the surgery. My voice is really breathy kind of raspy and hoarse. I'm having minor problems with swallowing / choking but it seems to be getting better. I'm just waiting to see if it gets better. My surgeon says this happens in about 40% of cases. Regarding the medication I was started out a little too high then too low and now we're trying another dose. I understand it can take awhile to get the dose correct. I feel tired a lot but I've git a lot going on besides this. I'll have some more blood work done and they'll look at the levels again. I do feel off not myself but not too bad. Hoping this adjustment sorts it out. Feel free to message anytime.

  • tpiro
    tpiro Member Posts: 6 Member
    #5

    Hey Deanie.. thanks for the reply.. No problem for the delay. All it good! I cancelled my surgery and here is why I did. I consulted with Dr. Akira Miyauchi - President and COO of Kuma Hospital, Center for Excellence in Thyroid Care, Kobe, Japan. I said what the heck and threw caution into the wind and emailed him my concerns. Well, he corresponded and I was amazed. He is an endocrine surgeon and an advocate of Active Surveillance vs. Surgery in Low Risk Thyroid Cancer. But of course me not knowing if it is Cancer for sure nor did my current Endocrine Surgeon, hell she didn’t know- but did say that I was a puzzle. That to me was unacceptable for her to say. I furthered my investigation to Yale in New Haven and Telehealth’d into them to a Dr. Jennifer Ogilvie, Endocrine Surgeon.. very nice and informative and a great team. She viewed all PET, US Images and all FNA reports, among Endo Surgeon office note, etc. Guess what?... she stated that she would not have suggested a total Thyroidectomy based on PET / SUV levels.. She opted also for monitoring or “Active Surveillance” method.. well, 2 out of 3 ain’t bad as Meatloaf would say. So, needless to say- I cancelled my surgery and kept my multi-functioning organ in my throat…   I had no idea that little bugger controlled so much in the human body.

    I am pursuing my travels to the Philippines in 3 weeks and carrying with me all of my Scans, Images and reports to see a Dr. San Luis, Endocrinologist in Quezon Manila for a 6 month FU- whom Dr. Miyauchi recommended to me. I emailed Dr. San Luis and he said by all means please visit me and we will follow up after viewing everything.

    Wish me luck and hope in 6 months these nodules will not progress. If so, then we FNAB again and take from there. I want to thank you for corresponding with me about my Thyroid issue. Have a blessed day... Tony 


  • tpiro
    tpiro Member Posts: 6 Member
    #6

    And please take care of yourself and balance those meds for your thyroid... I know that does take a little time...

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    #7
    https://csn.cancer.org/discussion/comment/1693308#Comment_1693308

    Oh I'm so glad you have a path to follow. I wish you all the best. Sounds like you're traveling! God bless.

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