I’m Devon and I’m a senior in high school. Last week I was diagnosed after a surgeon biopsied the pleural lining of my lung during a seemingly unrelated surgery that was correcting a reccurant spontaneous pneumothorax. The surgeon removed a tumor in the lining of my lung measuring .5cm and believes that he achieved clear margins but pathology seems hesitat to say for sure because the tissue surrounding the tumor was inflamed. At this point following a full body PET
scan, it is believed that my lung was the primary location of this disease.
I am scheduled to have a port placed next week and to begin chemo the following day. There are two things that I am especially nervous for as I begin this process:
The Port. I am confused about how it will look, feel and how they will access it each time I go through chemo. Prom is in three weeks and although it seems insignificant in comparison, it is my senior prom and some normality is important to me. I’m unsure of whether or not I’m going to have a huge bandage on my shoulder or whether I’m going to have a lump or what will happen. Has anyone had this? What is it like?
The effectiveness of the chemo. Obviously I have heard from many people that chemo is not as effective on our type of cancer (yay us!) than on other types. Unfortunately because my cancer was found in the lining of the lung, they will likely be unable to radiate the area as it is long, skinny and curved and they cannot aim the radiation that well as of yet. I am very wary of the effectiveness of chemo and am confused and unsure of how to proceed. What is everyone’s experience with chemo and synovial sarcoma?
Thank you all so much! I am so grateful to have this support system of people going through things similar to what I am going through!