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Need advice from long term survivors!!

Posts: 186
Joined: Oct 2010

Just had my follow up PET scan - doctors sent me because the neck ultrasound showed 2 suspicious nodes in my neck. There are definately 2 more to worry about - one kind of under my jaw near the end of the jaw bone, the other just above my collarbone - both right side. The rest of my neck and body remain clear.

I've been through a TT, RAI, bilateral neck dissection, RAI again...and its still not gone.

They have suggested surgery followed by external beam radiation. The thought is that RAI is not being effective.

I'm really angry that its back again - but I know that lots of you here have been through the same or worse.

So words of advice? Suggestions for best treatment options? Help!


alapah's picture
Posts: 287
Joined: Oct 2009

Well, although I am not exactly a long term survivor (TT 2009) I can speak to the EBR aspect. I actually had no lymph node involvement but my tumor had been large-ish and was not totally encapsulated. It had adhered to my trachea and though the surgeon scraped what he could, the docs told me that my RAI dose was unlikely to effectively penetrate the tissue of the trachea so EBR was recommended. I sought about five second opinions and ended up getting it done (fall 2009). Not an easy thing to do but I can tell you that two years later my neck is totally clear. The radiation oncologist focused on my trachea but also included a pattern to cover the lymph nodes for good measure. My beam pattern was all below the jawline - above it you start to have potential issues with salivary glands but it can be done. I have had no long term ill effects thus far - oddly enough it is sort of a distant memory. Radiation to the head requires a mask that attaches to the table to ensure you remain in position. Understandably, that is distressful to many. I was able to deal with it ok without any meds.

If you decide to pursue that option, let me know if you have questions about it.

Posts: 186
Joined: Oct 2010

Thanks for that info. I feel better about it already! I too just want it a distance memory. They told me about the mask etc - not a pleasent thought but I'm not clautrophobic. I'll just pretend its my motorcycle helmet!

Once I know whats going on I'll definately have some questions.


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