Just a few questions: How often do you guys have your scans? I have a ct of my chest done every 3 months and the Dr. said that would continue for 2 years. Then it would go to 4 months for the 3rd year. That seems like alot of ct scans. The tumor I had was 4 centimeters on my foot high grade biphasic synovial sarcoma. I' m so worried about this cancer returning. What do you guys look for and where when you check yourself. I have swelling in my right arm pit but the Dr. doesn't seem concerned about it and nothing shows up on my ct. Also how does the Dr. check you guys? My doesn't do anything but look at my ct of my chest. Do ya'll get physically examined. Me and this Dr. are just not clicking but he is the closest sarcoma specialist to me. I just want to make sure he is doing what is best for me.
I believe the standard follow-up care in the US is chest Ct scan every 3 months for the first 2 years then 6 months up to 5 years post treatment then 1 year up to 10 years. This may vary somewhat depending on the sarcoma specialist and how he feels about your particular case. This disease can be dormant for a long time, sometimes more than 10 years. I met someone for example who had it in the neck and was without recurrence at 5 years post treatment. Her oncologist told her she could consider herself cure and she could have more children but then the disease came back aggressively at 7 years post treatment. And she didn't survive :-(
That in mind, of course it is difficult not to become hypochondriac. And the fear can't be cured by a doctor. It's something you have to learn how to handle by yourself. So far, in my experience, every scary abnormality in my body has turned out to be unrelated to the disease and every time the disease came back, it was silently (without symptoms) and was picked up only by the chest CT scan. So I do think it is the best tool for catching the disease early when it comes back.
I think you did the right thing when you mentioned the swelling in your arm pit to your oncologist. I don't know if it means much that it doesn't show on the CT. I am under the impression that when it comes to the arms and legs, MRI are better than CT scans but I'd assume that the CT scan should still show something if it was a sarcoma. If you are still concerned about it and you don't trust your oncologist, it might be worth to travel further to get a second opinion. Although it may still not give you complete peace of mind...
I was on a 3 month schedule for CT scans after a tumor resection from behind my knee. I am thankful for the scheudule, it caught 2 nodules in my lungs that were less than 10 mm. I am now on a 4 month schedule on a clinical trial for CT' scans, and a 3 month MRI schedule for my knee. I got the same schedule Elodie detailed above for my post surgical follow up, but things change per any potential treatments. For what it's worth, there was no technical medical signs that I had mets in my lung... CT scans were where it showed up.
That being said, I had a discussion with my Oncologist about what my sarcoma could spread to, the blunt answer being, any soft tissue in my body. At the end of the day, I am more aware and cautious about any physical changes in my body. There is also something to be said for a primary care doc, regular physicals, and their communication with your specialists. My primary doc has helped me rule out some of my initial hypochondriac-ish issues.
Also to support Elodie's last point, a great doctor is worth traveling for. This wednesday I am traveling from Connecticut (home) to Philadelphia, PA to follow-up with my orthapedic oncologist. We have been on a 3 month follow up schedule, I send him an MRI every other time, and phone/email, and see him every other visit.
My grandson had his first scan after 2 rounds of Chemo ( 6 weeks ). I think the doctors wanted to see if there was any reduction in the tumors. He starts radiation in 2 weeks and will have the next scan 6 weeks after completion of the radiation which is 6-8 weeks. So it appears it will be about every 3 months. Will keep you in my prayers.