Pre-menopausal uterine cancer survivor

idontthinkso

dear jilld, i am replying to you even though your letter was written last March. How are you doing? I know how scary this all is. I have had the same kind of cancer and also comefrom a family with NO cancer.

Does anyone know? How do you know if you are okay? How do you know if you aren't? Let me know how things are going for you.

homeschoolmom

lizzie2 said:

When I was forty-six I had a hysteretomy and cancer was found in one of the fibroid tumors (leiomyoscarcoma)very rare they said. I was cancer free for six years and it returned to my lung. Two years later went to my small intestines. A year later or so it returned to my lung and six months to my lung. Each time surgery was the only hope this time a chemo treatment was found and worked. Now it is wait and watch. It has been 11 years one month since my first diagnosis. I truly understand how you feel.

I had a complete hysterectomy at age 44 due to Leiomyosarcoma attached to the outside of my uterus in Nov 2002. I followed this with six weeks of pelvic radiation. In Nov of 2003, the same symptoms returned and a CT scan revealed a tumor nestled next to my small intestine. I had a second surgery, same incision, in Nov 03 to remove not only that tumor (no resection necessary), but also suspicious spots in the omentum and my appendix (a huge tumor wrapped around it). All tumors were from the original Leiomyosarcoma. I'm about to undergo chemo and have done some research about a clinical trial at New York Presbyterian Hospital with oral chemo for Leiomyosarcoma that I may sign up for after this treatment is completed.

montana

hojo said:

hi i'm ronnie and a uterine ca survivor..diagnosed with stage 3 12/99 at 47...2 surgery's, radiation, chemo and i am alive to tell the tale..it's bothersome to me that the only diagnoses for uterine ca is d&c..yes you are right that bleeding is NOT a normal sign of memopause ( and what did i know and i'm an RN)be persistant and also be hopeful!!! great book to lift your spirits..Bald in the Land of Big Hair by Joni Rodgers...Keep in touch..it's nice to know i am not alone...:) ronnie

I know your post was well over a year ago. I was diagnosed with lms, stage iii end of Jan. 2004. It had not spread outside the uterus, but was considered very aggressive, large. I am receiving radiation therapy for 5 weeks in another state as I am from a rural area that had not heard of this. I am considered cancer free right now from the surgery - the rt is to prevent recurrence - is there anyone out there that has faced this same situation? Some docs want to do chemo, but others say they do not believe it is necessary - yet everyone hedges as these tumors can come back. I am reluctant to do chemo - if you did or have done chemo when cancer free can you tell me on what protocol? Bless all of you out there for your courage and grace - I am 57 and also a thryoid cancer survivor. I will answer anyone that writes.

cbickrest

candygirl said:

Dear RelayRonni,

I am SO sorry to hear your tale! I WILL pray for you! Please e-mail me at cjk711@yahoo.com

I must start taking Megace myself soon. I am so sorry you got fat on this! What other side effects did you have? How are you doing with your cancer now?

PLEASE, PLEASE do NOT give up, OK? I CARE A LOT!

Candygirl

I took Megace 8 years ago--gained only 5-lbs. The main thing I remember was that I felt very emotional--cried whenever I was driving???? It effects everyone differently. Listen to your Dr. I had my precancerous condition reversed with Megace--unfortunately since than, I moved to another state and was under another Dr. care that didn't take my situation as seriously as my Dr. in PA. I went off a low dose birth control after talking to my new Dr. and ended up with cancer--hysterectomy and radiation. I knew better than to go off the birth control but I was 39 without children and thought I'd give it one last go!!! I hope that someone reads this and doesn't make the same mistake as me.