I was literally just given my diagnosis yesterday: synovial sarcoma.
It's probably been there for years... I would say at least 5-6 years ago I can remember my first experience with my "exposed nerve" or "sensitive spot" on my thigh. It was very sporatic. If you hit or tapped it just right with enough force, I would get a shock of pain in my thigh or down my leg. Since it was a rare occurence, just figured it was a pinched nerve. Over the past 5-6 years, it occurence became more frequent, but was never anything that caused alarm.
Then this last September, during a couple of weeks of very cold temperature, my thigh began to ache badly. A couple of days, I had trouble walking up stairs (not due to pain, but just weakness). I was ready to make a doctors appointment, but when the weather warmed up, it pain subsided and I was back to normal. So I put the doctor off.
Then November came. I was laying on my side on the couch snuggling with my hubby. He put his hand on my thigh and said, "Honey, is that your nerve?" I didn't know what he was talking about and looked down and felt it with my leg. There was clear swelling and some sort of bump deep in my leg. That's when true concern reared it's head. I immediately made an appointment with my doctor.
She initially made me an ultrasound appointment as a preliminary test. The results showed a complex mass (part cystic in appearance with a small area of solid). Due to its complexity, I was referred to a general surgeon.
The first general I went to see was quite a disappointment. I waited for an 1 1/2 hours in his waiting room, and then when I finally saw him, I felt dismissed within the first second of him entering the exam room. I had to tell him that I had sent over the ultrasound report ahead of time (which he never looked at). He read it in the room with me. Since the report noted that there was a possibility the "cyst" might be a hematoma, he immediately said to me, "It's probably a hematoma. You must have had some sort of trauma there." I explained to him I never had trauma to my thigh and also told him the history of my "senstive spot." He didn't care. I even had to make him exam my leg. He clearly focused his practice on the lap band and didn't have time for my nonsense (though he was very nice and charming in his approach). After I insisted it must be something, he said he would send in a referral to an orthopedic surgeon. I didn't trust him at this point so I did some research and chose another general.
My current general surgeon is sooo wonderful; super nice, caring, and thorough. Upon first examination, he said he was concerned and ordered me an MRI. The MRI caused him more concern and so I was ordered a core needle biopsy a PET scan. The PET scan showed activity only localized to my leg, though it lit up a little bit in my ovaries.
So then I had to get referred to my GYN/OB who ordered me another ultrasound of my ovaries, who then referred me to a GYN/ONC as a precaution. The GYN/ONC said everything was normal and cleared me as far as any issues with my ovaries (thank God!).
Then I had my biopsy. The biopsy was being accompanied by a CT scan for guidance. So after it's done and I'm reunited with my hubby I say, "It feels like he stuck my thigh muscle instead of the mass. But I'm not a doctor...what do I know? I'm not going to tell him: hey, I don't think you know how to read a CT." (BTW, this was being performed by an interventional radiologist, not my general surgeon.)
So then two days later I get a call from my very embarrassed general to tell me that the biopsy was of my thigh muscle and they missed the mass, and that I was going to have to get another biopsy. I laughed, told him how sometimes being a know-it-all is justified, and felt relieved that I wasn't crazy for having quite a bit of pain walking around for the couple of days following the biopsy despite being told prior to the procedure that I should be fine a few hours after.
So biopsy #2 (by a different interventional radiologist). This time they used an ultrasound to guide the needle. It was pretty neat...since I had to lay on my side, the screen was right in front of me and I got to watch the needle enter and extract tissue 6 times. Still weird walking for a couple of days after, but nowhere near as painful.
The biopsy results typically take two business days, sometimes longer if needing a second opinion. Yes, well, mine took 2 weeks. That really sucked! Especially since I knew my doctor had three preliminary reports, but no final report. I get that doctors should not give out preliminary results since they haven't been confirmed yet, but that really sucks to know there's info but you're not allowed to have it.
So now it's yesterday, April 8, 2011. Synovial Sarcoma...yes cancer. It was a pretty short conversation. I'll find out all the details of the treatment/surgical plan in 10 days at my doctors appointment. I've Googled a bit of info though. For now, my family and I are going to spend a week in St. Lucia at the Sandals Grande St. Lucian. We leave tonight... Hope we get good weather!