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Probable papillary spread to a lymph node on the side of my New York friend's neck

MarinMark
Posts: 139
Joined: Aug 2011

Wow. Thyroid cancer is more prevalent. My old high school buddy John in New York called me. (I told him to join and post here but his wife rags on him that he already spends too much time on the internet).

He had his thyroid removed completely two months ago in Boston for papillary cancer. Now in New York on ultrasound eight days ago there are one or two suspect nodes off to the side of his neck which might have calcium. His doc thinks the ptc has spread there and an mri was recommended. John doesn't think he could tolerate yet another surgery and on both sides of his neck. He has never had an mri before and neither have I. He asked me if the first radio iodine ablation treatment can kill any lymph node tumor or must all evidence of any lymph node tumor be removed before that radio iodine treatment ? He's confused because he hears that many docs know there can be small spreads to nodes but they just treat with radio iodine after complete thyroid removal. He's also concerned that if a surgeon removed the nodes on each side that doesn't mean all tumor has been removed.

.

amorriso
Posts: 186
Joined: Oct 2010

Hi. I was in a similar situation last year. My thyroid and 2 lymph nodes were removed in september, I did RAI in November. Things didnt feel right with me and I went back to a surgeon in january/february. They sent me for a PET scan. IT wasnt unpleasent - just boring lying still for it.

Based on the PET scan I had to do a second surgery to remove many lymph nodes - my cancer had spread.(50 nodes removed, 7 positive - all on the right hand side) Probably should have been done in the first surgery, but my surgeon wasnt good enough. I used a different surgeon for round 2 - if I'd had him the first time he'd have had me back in for additional surgeries much sooner.

I did a second RAI in May and my last ultra sound looked good. I'll need to do scans etc again in October but so far things look ok.

As for advice to your friend....he may wish to get a second or third opinion if possible. Tell him to bring all his records. He can email some places too for advice - thats what I did before the second surgery.

A PET scan may reveal more of what's going on - it's what I used and I will do it again. Then he can discuss the results and make a decision as to try the RAI or simply proceed with a further surgery. For me I didnt have a choice - the surgery was a must.

Tell him to come on board to the forum - it will help

Andrea

nasher
Posts: 507
Joined: Apr 2010

A lot of people out there have had thyroid cancer

until you mention it you dont find many. As soon as you mention it you start finding people who have had thyroid cancer

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

If he only had RAI two months ago, he should know that the RAI is still working in his system - for something like six months. However, during my rounds with the various docs I have seen, I got the impression that RAI has a bit more difficult time reaching/penetrating lymph nodes versus thyroid tissue. Aside from surgery to remove affected nodes, there are a few places, Mayo Clinic for one, that offer alcohol ablation for treatment of lymph nodes with thyroid cancer - guided by ultrasound, they inject alcohol directly into the affected node(s). I had a suspicious node a year out from surgery and my Mayo docs determined that would have been one option for me. I don't know exactly what circumstances qualify for this versus surgery, but it may be worth looking into. (My odd node turned out to be fine so I never had it done).

I had one MRI done just prior to getting external beam radiation to my neck (I had an unencapsulated tumor that had adhered to my trachea so after surgery and RAI I had radiation to boot). The MRI was done mainly to get imagery that would help the radiation oncologist determine if my surgeon had removed enough tissue. Thankfully, he had done a fantastic job. An MRI does not expose you to radiation - it uses magnets. Loud machine though and you're kind of in a narrow tunnel. Apparently i am a tad claustrophobic so I had to get my mind in a zone to deal with that but it's not bad if you can manage the tunnel thing. I guess some patients need relaxants. I just never opened my eyes from the time they started sliding the table into the tunnel to the time I was out.

On the other hand, I had a PET scan when my Thyroglobulin was on the rise and my neck looked clear - I have lung mets as it turns out. From my understanding, an MRI won't tell much, if anything, about spread of thyca. The PET/CT scan seems to be how problems are found.

Hope that helps. Best to your friend.

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