General Support

Hi, I'm new to this group. I was diagnosed with ESS in 1997. I had a full hysterectomy - including overies and have been on Megace ever since. The side effects are very hard to take but my oncologist doesn't belive that it is causing anything! I'm glad to read that others are bothered by it so I know it's not all in my head. I guess it's keeping me alive. Good luck to all of you. If I can answer any concerns I will.

Hi there! Just wanted to let you know that I am a 30 yr. old woman who was diagnosed with stage 3c ESS in 1995, and now I'm still alive and have NOT had a recurrence, even though my cancer had spread through my blood stream and lymph nodes. I do however have lots of side effects from treatment, and I'm so sorry that your doctors don't believe that your problems stem from your treatment. Have you ever gone to a cancer pain clinic? They are fabulous. I have chronic pain and lots of bowel issues from the radiation. But I am happy, married, and adopting a baby currently. My life could not be better. Best of luck to everyone

Congatulations on your adoption. I'm glad you are healthy enough to start a family. You were very young to contract ESS. I'm now 50 and found out about it when I was 41. My oncologist told me that I was young to have it. Where are the cancer pain clinics? I live in Canada and I'm not sure I've heard of one. Are you also on Megace? I did not have radiation or chemo. Good luck with your new family and any ongoing treatments.