Hi Everyone,
I'm a two-time survivor of Synovial Sarcoma. My original diagnosis was back in 2011, a barely there tumor found in the middle of a 6 cm x 8 cm blood cyst that developed in my right mid-thigh region. Surgery and six treatments of localized radiation was the end of that.
Then in 2014, one of my standard every 3 mos. chest CT scans showed a nodule (about 1 cm) in the right lower lobe of my lung. I had a wedge resection of that tumor, and opted in to a really harsh chemotherapy treatment at the recommendation of a specialist to attempt to nuke any remaining cells that might be hanging out in my body. The chemo was an adriamycin/ifosfamide combo, but in such a high dosage that I actually had one oncologist refuse to treat me for fear I would get a secondary infection and die of pneumonia (no joke, that was his example). Funny thing is, I did amazingly well during the chemo and hardly had any side effects other than the standard losing of hair and a tad bit of smell related nausea.
Now, 2016, and there's a possibility its spread to my subcarinal lymph node. In December, my chest CT scan showed a slight enlargement of the lymph node, but it was still in normal size range and I had a cold at the time. My oncologist still ordered a PET scan to be safe, and that scan came up clear, so we chocked it up to the cold. Well, my scan of last week shows the same subcarinal lymph node has enlarged quite a bit over the last three months and is now definitely out of the normal range. So I'm scheduled for another PET scan and I'm consulting for a biopsy. Aaaannnddd...by the tone of my oncologists voice at the appointment (though he won't say it until the biopsy is back), he thinks it's definitely another metastasis.
I've Googled (I know...not always the best), but I can't find much about SS in the subcarinal lymph nodes. Most of the articles, studies, etc. that I find only mentions that particular lymph node in relation to a metastasis to the mediastinal region, but I'm not to that extreme yet. If anyone has or knows someone who has had a similar occurrence, can you please share? Thank you!