Possible thyroid cancer or lymphoma :(

I was in the same situation as you.  I had a lump behind my left clavical (colar bone) and kept growing over a period of 2 years.  My PCP thought it was an infected lymph node so he put me on antibiotics over a period of 9 months to no avail.  He took an xray, which showed nothing.  I finally went to an ENT and after 10 minutes of my apt with her, she scheduled me for an ultra sound and CT.  As it turned out (after a fine needle biopsy of my thyroid and the enlarged lymph node), I had thyroid cancer that had spread to the lymph nodes in my neck (2008).

You need to have this biopsied for Tall Cell Variant (TCV) / bRAF mutuation.  The typical treatment for thyroid cancer is RI-131 (radioactive iodine - pill form), which is 95% + in eliminating any remaining thyroid cancer cells.  Although if your biopsies comes back as TCV / bRAF positive, this variable of thyroid cancer is 100% resistent to the RI-131 treatment.  There is no protocol treatment for this type of thyroid cancer and there have been many clinical trials - still ongoing.  The most common form of treatment is surgery to remove the lymph nodes in your neck.  That is what occured with me when I initially had my thyroid removed along with 24 lymph nodes (12 were cancerous).  Over the course of the next 3 years, my annual body scans and blood panels were good.  Then in year 4, my scan was good although my blood panels (thyrogobulin and thyrogobulin antibodies) reflected something else.  After a PET scan, it showed that the cancer had spread to other lymph nodes in my neck and chest.  I just had the ones removed from my neck in Feb 2013 and cannot perform thoracic surgery to remove the lymph nodes within my chest, as there can be short and long term complications.  I had visited Memorial Sloan-Kettering Cancer Center in NYC (Jan. 2013) for a consult and possibly become a participant in their clinic trial.  Although their clinical trial was already in Phase III and therefore I was not eligible.  Their recommendation was to surgically remove the lymph nodes from my neck, which I did have done as previously stated.  Once the cancer is in the lymph system, it will spread in time to other lymph nodes as well as the lungs and bones.  You need to understand that this type of thyroid cancer has only been acknowledged in the past 10 years, therefore statistics on treatment, survival rates, metastizing to other areas of the body and treatments are limited.  The most common treatment approach is chemo pills (Nexavar and Zelboraf).  Zelboraf will only be approved if the biopsy shows bRAF positive mutations.  This drug was specifically designed for melanoma as Nexavar was designed for kidney and liver cancers.  There are many ongoing clinical trials with limited results. 

I was treated with Zelboraf, although I had a severe allergic reaction after a few days and was immediately taken off this chemo pill.  I am now on Nexavar (Sorafenib) and will have a follow up PET scan in 3 months.  Nexavar chokes off the blood supply to the cancer cells and through clinical trials it has a 23% partical response rate (some shrinkage of the lymph nodes), 56% stabilization rate (no growth) and 41% progression rate (spread to other lymph nodes, lungs and/or bones). 

I cannot express the importance of having your lymph node and thyroid also biopsied for the TCV and bRAF mutation.  The results of your biopsy will dictate your treatments / interventions.  Many ENT's and Endoconologist's are not that familiar with this type of thyroid cancer or they have limited knowledge and treatment options.  I hope your apt on the 5th provides you with more information.  Also, what has your blood panels showed (T3, T4, TSH, thyrogobolin and thryrogobolin antibodies).  These test results will provide insight along with the results of your biopsies.

To learn more about this type of thyroid cancer and treatments, just google:

1.  Nexavar / Sorafenib for differentiated thryoid cancer

2.  Thyroid cancer and bRAF mutation

Google will provide multiple links for this.  I've learned through my own experiences with this that you need to be your own patient advocate when dealing with any medical issue.

Please keep me updated on your situation and I will try to provide you with information that I have found to be helpful in my quest.

Bill

emily_mac2003 said:

Hi Bill!
Thank you SO much

Hi Bill!

Thank you SO much for writing and giving me so much information! I'm going to bring it up to my Dr to be on the safe side and make sure everything ok and completely checked out before we ever "close the case" if you will. I had my blood tests done about 2 weeks ago (appx 8 vials), and the only thing that showed up were low levels of vitamin D (not surprising, I live in Washington where it's cloudy all the time haha). My Dr said that we'll more than likely be doing a biopsy after this ENT appointment, as I've already had the ultrasound. She also wants my cysts and nodules on my thyroid biopsied, but the radiologist who looked over my ultrasound results said they are smaller than he'd like to do a biopsy on, so I'll be waiting until the possibly get bigger. One thing that has been concerning me a lot this past week is that, for the first time, that area of my neck gets sore occasionally. Not the lump itself but the surrounding area. It could best be described as the same sensation you get when you get a charlie horse or food arch cramp, but milder. Maybe it's all in my head, but I'm still going to tell my Dr when I see her.

 

Emily,

What is the situation with the biopsy?  What have they determined?  Interested to hear your situation.

Thanks, Bill