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Synovial Sarcoma - Online Support Group

2x Survivor~6 years scans show small cancer not Synovial Sarcoma?


#1

I am a 2x Synovial Sarcoma survivor, I’m 54, my onset was in my neck 11 years ago. I had radical neck surgery and 45 rounds of radiation. I got distant recurrence in my middle right lobe in 2012, I had a lobectomy and NO TREATMENT after, because no lobe, no margins.
Now my question, I just went for my 6 year annual (first annual), I now have a small tiny spot on my right bottom lobe. They say it can’t be Synovial Sarcoma, because the spot was there last year and they just watched it. It grew s minuscule amount, but it is cancer. They say it is some other cancer. It would have grown aggressively and it didn’t. Has anyone else ever had a different cancer like this after Synovial Sarcoma recurrence? Can it be from all the radiation years ago? Ps I am an MD Anderson, Houston, Texas patient. My Dr is Dr Robert Benjamin, many of you know him and those who don’t he has been studying SS of the head and neck for his entire career. I was even part of a research paper he co-authored last year on the Survival rates of SS to the head and neck. So, yes I’m definitely in the right place. Course of action, if I can pass the evaluations for thoracic surgery, they are removing the entire right bottom lobe. If I do not pass the evaluation (which is a definite possibility) because of my diminished lung capacity now than Chemo, which I have never had and I am deathly afraid of. I am deathly afraid of the Chemo because I was a rare case with incredible nauseous etc with radiation only! I would appreciate anyone’s input on this situation. If it ever came back I expected it to be SS. I am really bewildered and frightened more of what the future holds. Will I keep cropping up with cancer every 5-6 years? This is my fear. Than my quality of life keeps getting worse with every recurrence.
Thank you in advance for your help!
Jodie


#2

Hi. I had mets that grew very slowly in my lungs. My primary was in my l femur in 2009. I did chemo. 4 years post diagnosis I had a tiny spot removed that was cancer from my right lung that was so small when they went to get it they had a hard time finding it. It had been being watched for a year and a half and grew very slowly. I ended up with a lobectomy I think because it was so hard to find once they got in there. I did no chemo or radiation. Three years after that, I had a met removed from my left lung. We let that one get a little bigger before going after it. Two years after that, they found a 4cm mass on my adrenal gland. In retrospect, you could see it on a scan that had been done 3 months earlier but only if you knew you were looking for it. That one grew very quickly from nothing. My other tumors grew very slowly. I am scanned every 3 months chest, abdomen and pelvis. I think a lot of the MD Anderson team and have been there myself though not with Dr. Benjamin. I just would have concern that it in fact could be the same thing coming around again or at least I wouldn’t rule it out. My best to you to figure it out. Judy


#3

Hi Judy,
Thank you for the response. I did get a call from my thoracic surgeon yesterday. They are not just going to remove the bottom lobe without complete evaluation etc. I had called yesterday am to say the same thing. So I guess there was some confusion. My question back for you, because I was not 100% clear, did ALL of your recurrences end up to be the Synovial Sarcoma again? Or was it something else at times?
This is tiny 7 mm, yes mm not cm! Thank Goodness.
Thank you again,
Jodie


#4

Hi Jodie, will you let me know if you get this because I just hit reply within the email? My case was very strange from pathology standpoint. I was originally diagnosed with small cell osteosarcoma. My tumor was in my left femur. I had pathology done at Mass General with a biopsy. The tumor was removed at at Presbyterian St. Lukes in Denver in June 2009 where I did treatment. The tumor was then sent to MD Anderson for pathology when I went for a consult in 2010 where they confirmed it was small cell osteosarcoma. My first lung metastasis happened in 2013, it was again confirmed small cell osteosarcoma at both PSL and MD Anderson may have reviewed this tumor as well. My second lung metastasis was in 2015; again I was told small cell osteosarcoma, but in 2017 when they took the adrenal gland tumor out, that specimen was sent to Foundation One Medicine where it underwent a Heme tumor profile. This is for genomic alterations. It was determined that I have synovial sarcoma. After that, the lung tumors were retested and found to be synovial sarcoma. The leg tumor by this point was 8 years old and the test was inconclusive. It is believed that because I had this genomic sequencing I have had synovial sarcoma this entire time and was misdiagnosed initially. The pathology done on the original femur tumor in 2009 and 2010 did not have genomic sequencing done on it. It was done under a microscope. I think this is only something that was offered to me after this last metastasis. I feel like at every turn, I have been told my case isn’t typical. My point in writing to you certainly isn’t to induce fear but just to say I don’t think they always know and it seems possible that it could be the same thing years later. If you want to talk anymore, feel free to write to me. I hope your evaluation goes well. My best, Judy