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PET Scan imaging - false positives?

Carogirl
Posts: 2
Joined: Feb 2008

My Dad has recently had a total thyroidectomy for a 9cm x 4cm goiter -- Left side pathology revealed papillary cancer with follicular variant with vascular involvement. Cervical lymph nodes were negative. The tumor has also been labeled poorly differentiated. He had a PET scan done in Jan. that showed uptake in the lungs and at the thyroid site. This cancer is not iodine receptive so he has not received I131....He was denied enrollment in a clinical trial for biomolecular therapy because of a bundle branch problem with his heart. The drs. have him on 150mg thyroxine daily and have scheduled him for a CT scan on March 10, 08 to see if the tumors have grown....Right now we are all scared and he is definitely angry because he feels like he is not being offered anything proactive. I do not believe the results of the PET -- I have read of false positives and he has a history of tuberculosis scarring and has been treated for bronchitis since a week before the thyroidectomy. I think the dr. may be thinking that this is an 84 year old man in reasonably good health sans thyroid cancer, and chemo/radiation would really compromise his day to day function, but I also understand his frustration at feeling like he is not being proactive when the cancer is poorly diff. Please Help!!!! We need some advice. Should we get a second opinion? Should we insist on a biopsy of these so called lung lesions in order to know what we are dealing with? i would very much appreciate any info. anyone can share....Thank you!!!

redbonegirl
Posts: 2
Joined: Feb 2008

Hi Carogirl,

I'm sorry to hear about this and how scary it is to the family.

i will not pretend to understand a lot about this, but i am a thyroid cancer patient myself and am undergoing the iodine treatment.

What I did want to share with you is that if you feel that you need a second opinion, GET IT!

I had a huge growth in a mass within a matter of months and the endocrinologist that I saw at the time, did not want to pursue it. Thank goodness I knew I needed to see someone else. After an ultrasound guided biopsy, we found that cancer was present.

i can't tell you how awful i felt physically as time went by while i waited to be seen by someone else. Things are a little better now, but imagine if i had never gotten that second opinion?

Good luck

Carogirl
Posts: 2
Joined: Feb 2008

Hi rebonegirl -- I am so sorry for your frustrations -- I think that part of our issue is that my dad is of an older generation when Drs. were your friends and genuinely looked out for you...Not so with a large medical center where you are seeing several drs. in one visit....He is feeling alot of frustration, but is also scared that he will alienate his current team if he questions them...what kind of cancer do you have...and how are you now? Take care.....

September7
Posts: 1
Joined: Jan 2017

hey Carogirl,

 

how is your father doing now? I have tried to follow up your posts but have not heard much back. Hope he is doing well and is in good health. Did the second opinion help?

 

Thank you,

 

zaynah

Batuki64
Posts: 1
Joined: Dec 2016

I had a total thyredoctomy and lynph nodes performed on Jan 13 2017 and after RAI the total body scan showed that the thyroid bed is ok no cancer on the neck but something showed up on my back on my L1 vertabrate after a pet scan and CT scan they concluded that is a 3 cm tumor but I do not fell anything. So on the 29th this month I have an appointment with a neurosurgeon to see what we can do.

So I am wondering if nybody had this experience and how did you deal with it??? thank you by the way I had 6 positive lynph nodes and papilary carcinoma and funicular cancers.thank you.

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