I had my follow up 3 month scans and they showed NED. I’m not sure how I feel about this because I have a very sore chest pain that comes and goes. I told my doctor about it and he says not to worry. My scans came in fine but this chest pain feels so strange. It feels sore and today it’s starting to feel a little sharp. I do notice it gets bad when I drink coffee but I don’t think that’s what’s causing it. My scans showed that I have two lung nodules (I think that’s what they’re called lol) but they didn’t react to chemo and they’ve never changed size and have been there forever. They told me everyone has them and they’re not cancer. So basically they’re telling me that I’m doing amazing so far but I can’t enjoy it because I’m so paranoid about this sore chest pain. My doctor asked me if it has affected my breathing or if I’m coughing and I’m not so my doctor isn’t really taking these pains serious since on top of that my scans look fine. Anyone else have an experience like this?
For the record, I had a 7 cm synovial sarcoma tumor eating into my skull, neck and spine. It was removed with no clear margins because it was a very dangerous surgery. They got out about 90% and before my second round of chemo it showed the cancer was dead. I also did 37 radiation treatments. I’m with UCLA and they believe that there’s a good chance it may never come back. They do see a spot but the ucla board agrees it’s scar tissue from surgery. I’ve had 3 scans since sept all if which are great. I finished treatment in dec. I really don’t know what to think. Anyone have a case similar to this?
Could the pain be a late effect of your radiation or surgery? May be a damage nerve? It's difficult not to be paranoid but if the doctor tells you to relax then embrace that! Your news sound very positive :-)
Maybe It could be an effect from your previous treatments? I also think that every time we have any sort of pain after being clear for some time, our minds make it worse bc we are always that much more paranoid. Since your scans are clear again and your doc isn’t concerned at this point, I would say just try to be happy and stay positive Enjoy life. Maybe that pain will go away on its own. Ya never know.
I have experiences like you mentioned above daily. I had a 15cm (at its largest size) synovial sarcoma in my right chest wall in 2012. I had surgery in September of 2012 because after 5 rounds of chemo the tumor exploded in my chest for lack of a better word. I had 2 lower lobes of my lung removed in addition to part of my diaphragm. I have had clean scans since Sept. 2012. Each time I do not believe that the scan could be clean because of pain I have that comes and goes. Currently I have pain in the center of my back and throughout my shoulder on the right side. I believe it is due to leftover surgery mess in my chest. Also I recently noticed that my shoulder on my right side is about 1-2 inches lower than my left and my upper back has a curve in the spine. My port is on the right side and I think I have been favoring that side to keep it protected from injury. I do try to stretch everyday and that helps some. I imagine with all of the work done in in your head and neck region it is not a surprise you have some pains that come and go and could radiate down to your chest. Our bodies get so beat up doing treatment!! I have a very hard time not being totally overwhelmed with the possibility of the cancer coming back but I owe it to myself and my family around me to not constantly be afraid. Oh and by the way I have clean scans even when I have had bouts of coughing and shortness of breath. The shortness of breath is most likely from the lack of lung capacity but either way it still concerns me. I had my first synovial sarcoma in 1995 in my leg and did a year of treatments (chemo, radiation, surgeries) through MDAnderson in Houston. I was in remission for 16 years. This is my second time with synovial sarcoma. I would say if the pain gets constant then have it checked out but I think it is probably just scar tissue and your body healing. Trust me each time I went in for a scan I was sure it had come back based on the pain I was having. I hope this encourages you a little and know there are others out there experiencing things similar to yours. :)
My son has the same pains, but no one seems concerned. We had a ekg to make sure it wasn't his heart and found nothing wrong. He has many lung nodules so our concerns are similar to yours. Please let us know if you discover anything else.
My doctor explained my chest pains are due to the scar tissue from the nodules that had been in my lung wall. The scar tissue does not like to expand; therefor, it causes pain while deep breathing or lying on my left side. This is due to the lung wall trying to stretch and expand. My doctor said to take Ibuprofin and hot baths (no Ibuprofen if you are on blood thinners!).
Enjoy life. Maybe that pain will go away on its own. Ya never know.