I started out with a tumor in my left thigh that was diagnosed as synovial sarcoma and had surgery to remove the tumor and a majority of my thigh muscle. The doctor told me that they got all clear margins around the tumor and I went through radiation treatment after the surgery. It has been a year now and have been feeling horrible for the last few months and found a lump in my left groin area. I went in for MRI and doctors are saying that it looks like tumors have spread to my lymph node but still waiting on biopsy. I had CTS done for chest abdomen and pelvis to check for any more tumors, I have been doing lots of research but not finding much on this except that it is a rare case scenario. I was wondering if there was anyone out there that has been in any situation similar to this...
Hi. My husband had a similar situation in his right arm and sholder. He had an initial surgery last year followed by local recurrence with radiation and surgery again this year. Doctors removed both tumors with clean margins. Second surgery also involved removal of lymph nodes in sholder area. Doctors think lymph nodes may be culprit even though path report from initial surgery showed no involvement of lymph nodes. This is all new for us also so do not have much else to share except to say it is similar to your situation
I've been dealing with this for 24 years. Diagnosed in 92 with it in my elbow. It took until '97 until it appeared in both lungs. In 2011 it hopped systems at appeared in the lymph nodes of my chest cavity. Surgery removed them. In 2012 I was on Votrient that reduced the lymph nodes to normal size for 22 months. Tomorrow I'm having surgery to remove the last tumor in my lymph nodes that has broken through to my bronchial tube in my left lung.
Hi Jim and family, I am thinking of y'all and praying that all goes well with your surgery. Keep hanging in there, give it all you've got. Does this call for another tattoo?
jimK said:Does
I've been dealing with this for 24 years. Diagnosed in 92 with it in my elbow. It took until '97 until it appeared in both lungs. In 2011 it hopped systems at appeared in the lymph nodes of my chest cavity. Surgery removed them. In 2012 I was on Votrient that reduced the lymph nodes to normal size for 22 months. Tomorrow I'm having surgery to remove the last tumor in my lymph nodes that has broken through to my bronchial tube in my left lung.
We have a very similar situation. My husband was originally diagnosed in December of 2013. The tumor was in his calf area. He had chemo and limb sparing surgery. The surgery was successful and they got clear margins, but just when he was getting on his feet again in December of 2014, he had a new growth in his groin area which turned out to be the SS again. This surgery did not get clear margins, so he was going to do chemo and radiation to get anything microscopic, but they were having to wait on that because he had necrotic wounds. This surgery was in January. Two months after that surgery, there was another growth in the same area that they thought was just scar tissue, but it turned out to be another tumor.
Our orthopedic oncologist told us that his tumor going to the lymph nodes was pretty rare, so that alone is scary, feeling like not many others have gone through this. We are going to MD Anderson in a couple of weeks just for a consult, as his specialist here has a very high opinion of one of the doctor's at that cancer center, but surgery is scheduled for June 2nd. The only reason they are going to cut it out this time and not do a hemipelvectomy is because his oncologist told us flat out that he would only take the leg if he could look us in the eyes and tell us that that would stop the progression of this disease. That alone is very disheartening to hear.
I am so sorry you are going through this. I really would like to hear what treatment you and your doctors decide on and the outcome of it.
The doctors at stanford decided that they wanted me to have surgery asap to have my lymph node removed and thEy followed trough and had that done today just got out of surgery! They didn’t even bother with a biopsy before hand and they said when pathology reports come back they would like to start chemo asap. But would discuss more after results come back.
Alicia