Recently diagnosed with ESS

This is my first time sending anything to this site but here goes. Back in 1984, when I was 35, my doctor found a pelvic mass in my uterine fundus. Needless to say, I was given a hysterectomy and a left salpingo-oophorectomy. A biopsy was performed while I was under and everything came back as normal. I was told there was no cancer. Now, in November of 2006, at the young age of 58, I go to the doctor to have surgery for urinary incontinence and another pelvic mass was found on my right side. There was a CA 125 blood test performed and the results were negative to cancer . I had surgery in Early December and was told the growth that was removed was the size of an 18 week pregnancy. There was a growth inside a fibroid cyst but everything was benign. Then in early January, I receive word from my gynecologist saying cancer has been found in the inner growth but not to worry because the growth was removed completely encapsulated. The surgeon also checked all my abdominal organs, at the time of surgery, including my lymph nodes and nothing was found to be abnormal. I was further informed that upon biopsy this growth was graded as low grade and stage one. I was then sent to a  gyneoncologist at the main cancer treatment hospital in our province.

I was told I do indeed have ESS, even though my story is a unique entity, having gone 22+ years without any recurrance. I must say, I have experienced no pain, no discomfort of any sort but I have been taken off estrogen as of the day of my appointment and I have been put on Provera. He also said there was no need to give me chemotherapy and or radium as there is nothing there to treat so why put you through this treatment if it is not required.

I have also been informed that my two CT came back negative to cancer, I do not have any cancer markers to even start tracking.

I am required to go for a medical check every three months and to have a cat scan on an annual basis. My specialist tells me I have a 50% chance for an intra abdominal recurrance.

Some of the information I have received as of lately has come from the internet where I am hearing such things as:

There is no cure for ESS

Chemo and or Radium do very little to stop or slow this disease

You will only find success stories for the first five years because that is as long as they do studies for.

You have a much better chance for success with low grade ESS.

If you are going to have a recurrance, it will most likely happen within the first 34 months after surgery. 

 You will required to be screened for the rest of your life

 I am quite nervous at this point in time as I have been dealing with three doctors, one my GP, one the actual surgeon who performed my operation and my cancer specialist. It seems the only thing they do agree upon is that, at this present time, I am cancer free. I read a lot about people with ESS who have on going issues with this demon but I have not heard from anyone who had this tumor removed and never had to under go surgery or treatment again. Do these people exist? Are there other meds besides chemo or radium one can be given if you have a recurrance or is surgery the main option?

I would appreciate hearing from anyone who can add some light to this old but new medical condition I have .

Thank you. 

Hello, this is Gail writing again and I wanted to give you an update as to what has been happening to me. I have been sent to an new gyno ongologist and he is the head of the unit at the hospital that I report to. He now tells me that I did have ESS but he is sure they got it all. He also says he doe snot believe this is a recurrance from over 20 years ago. He also said that I have a unique situation where my tumor was totally encapsulated. I still go for checkups every three months but have been told that I will only be sent for a cat scan if the cancer clinic feel there is a strong reason to. I guess what I am trying to say is that it is not always as bad as it first appears to be. My husband and I panicked as many couples do but after the smoke cleared away, things appeared to be better than before. We were told this cancer can come back but that is true of any cancer. Positive thinking made a big difference in our lives. I will be going for checkups the rest of my life but this is something I can live with.