angie1975 wrote:I was curious and wanted to see if any of you long term stage 3 NED have had any scares along the way while remaining NED? Examples spots on bones but turned out to be benign etc.I have been NED since surgery in Feb.2016 but seems like with each ct scan a new thing pops up for them to watch, so just curious how many of you have been in that boat or has it been smooth sailing since NED?
Thanks
Angela
I know I've seen others who have had spots that didn't grow, and eventually were ruled out as mets, but I haven't had that.
What I have had is my doctor not being worried about things I was. I thought that as a IIIc, my chances of recurrence were very high, especially since a node that lit up on my first PET was too close to my spine to be removed... So they left it in there! That was terrifying to me, but my onc wasn't worried. Once he explained why he wasn't worried, I stopped worrying, too. He said that because my response to chemo-rad was so good (just trace cancer cells left), that this was a strong indication that I was on the path to be cured. I was so relieved when my two year CT and MRI was clear. He was right.
My advice... Ask your doctor to explain why he/she is not worried. They are not BSing you to make you feel better. They are making judgements based on past experience. Once I started believing my doctor, I was so much happier and could live each day without this huge cloud hanging over my head. That may change after my next scan, but I refuse to worry until I have something real to worry about.