4 replies to this topic

[Tara1313]

Five years ago, I had TT and 125 of RAI. The cancer had moved on to my trachea, but thankfully just a little bit and they were able to pop it off and then RAI appeared to have killed the active Thyroid Tissue. At the time, before RAI they said that my lymph nodes looked active, but the surgeon said that it didn't look like cancer so he didn't take any at the time of TT. 

 

Two Mondays ago, I had my yearly ultrasound and they found a large lymph node. Last Tuesday, I had my biopsy with pathology in the room. Pathology gave me the preliminary findings that they did indeed find Thyroid tissue in the lymph node right near my trachea. But the pathologist was going on vacation straight after so the full report will not be sent to my Endo until Monday. Today that is. My dr. put me in for a 12:30pm appt hoping that the pathology would have sent her the report in the AM so we could discuss, but I just received the call that the report has not been received. My dr's office is calling to see if she can get it. 

 

When I spoke to my dr and told her what pathology told me last Tuesday, my endo told me that I will probably need surgery to have it removed and then she said if it doesn't take the RAI I may have to go to Sloan Kettering.(If you do not know Sloan Kettering - is the top ranked Cancer Treatment and research facility here in NY).

 

Since I am waiting and dying a little of worry. I am trying not to but easier said than done...right? If there is no RAI uptake- what type of treatment would they give me?  If it is in my lymph node...what does this mean? How severe is this? 

[Lovlkn]

So sorry to hear you have to go through this.

 

Right here in your story seems to be the start of your issues

 

 

At the time, before RAI they said that my lymph nodes looked active, but the surgeon said that it didn't look like cancer so he didn't take any at the time of TT. 

 

I did not have cancer - but I would believe they would begin by taking the affected lymph glands to a clear margin.  Where they go from there - I have no idea nor experience.  Joplin is the "resident cancer specialist" so hopefully she will chime in.

 

Hang in there - try not to obsess over this and think positive!  I'm one for staying positive - even when my mind is overworking itself into worry. 

[joplin1975]

Usually it means a second surgery. They call it a full neck dissection during which they remove all lymph nodes in the neck. You should probably have that independent of the issue of RAI.

Incidentally, my husband’s co-worker (they are both PAs) has thyroid cancer, like I did. We’re both having some abnormalities in our blosof work. She decided to take the initiative to go to SK and she loved it. She said her doctor really dismissed the idea that thyroid cancer is treated well by “normal” endos and doctors. I’m likely going to schedule a consult...

[Tara1313]

This site used to email me when someone responded to my topic, but not this time. Did I forget to click something ?

 

Are you in NY? you must be... for SK?

 

So far, I think my doctor's are awesome. I just saw her yesterday. It is confirmed PTC in one lymph node in the Thyroid bed. Which makes me feel better because my fear was that it was again on my trachea. So hopefully they are not mistaken. We are taking this one step at a time and I think that I have calmed down from our conversation. I started my low iodine diet on Sunday knowing that I will have the body scan in two weeks. Hopefully the date is available at the hospital for the the scan to have on March 14th. This way, March 18th my endo and I will meet to discuss the results. Our hopes are the following: 1) it is local in the throat area 2) that it picks up the iodine.  If this is it then most likely Pet CT scan and then surgery to remove and RAI to ablate. If it is in other areas and/or if it doesn't uptake the iodine then we have to have the SK discussion. Either way, she said that I am not going to die from this. At least not this year. LOL. (that is my humor). 

 

She was very surprised that the first ablation didn't kill it because five years ago I had 125 now they only give 30. So she thought for sure that it would have killed everything. I told her that from Nov 2017 until July 2018 I had 4 mammograms as they thought I had breast cancer. I also had 3 ultrasounds and 2 MRI's but I think the Mammograms made more grow. I heard the radiation from a mammo is like 10 xrays. Since I am high risk for Breast cancer they say 52% then I think for future I am going to push to go straight to MRI. I think they have much less radiation. I have to research. 

 

Additionally, when I spoke to a couple of other Thyroid cancer SK patients and I read up on - SK actually isn't as aggressive as my Endo was. I am not sure if that was a good or bad thing. And maybe with Recurrence it is different. But I remember SK not wanting to give me RAI my first time even though it moved onto my trachea. 

[joplin1975]

Yes, I’m in NY, but Upstate.

As far as I understand, RAI isn’t as en vogue as much as it once was, so most of the major centers are trying to move away from it. But I’d sure want a WBS, if I were in your shoes.

It’s frustarting because thyca just isn’t as cut and dry as I once thought it was...