A quick question or 2 or 3 :)


Hello everyone and thank you for adding me. I’m proud to be a member. Let me first start of by letting everyone know that I was the worst patient ever when it come to going to doctors up until recently. I found my tumor in my abdomen in 2003, I went to see a surgeon and he told me it was either a hernia or begnign tumor and I could wait 6 months to a year unless it was bothering me. I only had a 3% chance that it would be cancer because of my age (27). I waited exactly a year and went to a different surgeon. He took it out and it was SS. I wanted nothing to do with researching it. I went to Shands hospital in Gainesville for 4 treatments of ifofs & dox. I was suppose to have 8. This is where the worst patient comes in :). I was so sick from the chemo I told the doctors I wasn’t doing anymore. I stopped going to Shands all together. I had a couple problems (not cancer related) that sent me to er and they would do ct scans of my lungs and abdomen to rule out cancer being the cause and they came back clear. So my question(s) are, how do I even know that it started in my abdomen? Because it was such a slowing growing tumor. I hear so many stories of it coming back years later…sometimes 10 years up to 20 years. I haven’t been seen by a primary physician until about 3 months ago and he is really on my side and understands how I feel. I have been driving myself crazy lately thinking the cancer has came back or I’ve had it for years and just don’t know it. I asked for a whole body PET scan and the dr agreed that I should get one but i’m not sure now that a PET is the test I should get. But I want my whole body tested so I have peace of mind. Any input would be greatly appreciated. Thank you in advance.


I was misdiagnosed for years. Migraines and chronic sore throat.Finally at 34 I went to Philadelphia and they found synovial sarcoma in my neck. Very rare they said. Very grim prognosis in 1995 and not much information along with very little options with treatment. There wasnt chemo for my cancer then. I have lived with this for 20 years. It never goes away.I pray they find a cure.


The mental stress is always there. Masses that were benign over the years. Many surgeries to give me my voice back. My vocal cords were paralyzed from surgery.To many suffering with this monster disease. Lord God please give us a cure.


It sounds like you were in denial at first but fear caught up with you ;-) One sarcoma oncologist was joking at a conference that a sarcoma patient is only sure to be cured once he/she is dead... If the doctor agrees with the PET scan, you may as well do it.


I was misdiagnosed for years, too. Four to be exact. At 18, they finally told me it was SS. I underwent 9 rounds of chemo + 33 radiatons and surgery. Chemos were horrible for me too, so I told my doctor and he recommended Emend (http://www.emend.com/aprepitant/emend/consumer/index.xhtml) and it worked wonders :)

When I was SS free, I started having pains again and was, too, scared the cancer had come back. My doctor was worried, too, because our cancer is known for its recurrence, but the results came back clear. I still was worried and stressed so that's when I decided to get phycological help and I would recomend it for you too. Cancer is traumatic.

My advice to you would be to not let fear rule you. Yes, there's a possibility the cancer can come back at anytime but we have no control over that. We have to learn to live with it and accept it. Enjoy your live to the fullest and worry when it's time to worry, not before.

Oh, and never miss a doctor's appointment and CT's, TAC's or PET's :)


Thank you everyone! I really have put it in the back of my mind up until recently. Definitely gonna keep up on the doctors appts & tests from now on!



I have asked my oncologist for a PET Scan a couple of times and he has turned me down because of the expense. I would have it in a heart beat. My disease has been a very predictable case of SS so even though I would like to have the scan it's not medically necessary. I will be celebrating surviving 20 years in September. I think you should let go of what you did or didn't do in the past and start fresh. We are all only human.


So good to hear about 20 + year survivors. Gives me such hope. And helps me feel more confident about bringing a baby or two into the mix.


I personally wouldn't hesitate getting the PET scan, I would actually insist on it. I think knowledge is power and would want to know if anything else "glows". SS is a serious diagnosis, as I am learning, I'd want to know with certainty what I'm dealing with. It would help answer your question about whether or not it started in your abdomen.