confused and dazed

I was rushed to the hospital Easter Sunday, and started blood transfusion (my fourth in less than 5 years). I am 44 female. While there, the on call doc decided I needed more tests. Long story short, they found out I had sarcoma of the uterus.
I had everything taken out, have nice long incision that I am recovering from. Came home on the 19. I only heard from dr. on the 22, when homecare got on the phone and insisted they see me. I had a bad infection in wound. I haven't gotten my oncology report, and I am very scared, because the few things I can find on this sarcoma of the uterus says there is a 50% survival rate on stage 1. The dr did tell me it looked pretty good, but he left picc lines in for chemo. I know every case is different, but anybody out there been through this kind of cancer? Can you walk me through it, tell me more? I am so scared...


  • groundeffect
    groundeffect Member Posts: 639 Member
    Hi, first of all, let me say I did not have a sarcoma, I had endometrial cancer (and unrelated ovarian cancer, my "two-fer-one"). Any diagnosis of cancer is scary, and I feel glad for you that your doctor said your doc said it looked pretty good, and that you have the picc lines in for chemo. Take any "good" things you can for comfort.

    Have you researched the ACS site for Uterine sarcoma? There seems to be a lot of information for it, and I found more doing a Google search.

    How is your incision being cared for? I had a minor infection in mine that was seen on my first follow-up after my stitches were removed, and cared for it myself. That was probably one of the toughest things I've ever had to do myself, caring for the wound until it was healed. I won't go into detail, but you're even watching someone do that, you may be pretty scared because of that aspect, also.

    I hope someone who had sarcoma answers your posting. Please come back and tell us what your oncology report was, and what your treatment will be. I went through chemo (as many others on these boards have), and you may have questions about that, too. Best of luck!
  • groundeffect
    groundeffect Member Posts: 639 Member
    You may want to use the "search" box above to see what other people have said about their uterine sarcoma experience. I hope you'll do a personal profile, too.
  • shellsfrfl
    shellsfrfl Member Posts: 3
    I had TAH (total abdominal hysterectomy) March 16, 2005. After they sifted thru my organs I was told that I have leiomyosarcoma, about 2 cm in the muscle of the uterus. Doc said, "Boy you really had this this hysterectomy just in the nic of time!" I am scared out of my wits because, just like you, I went straight to the internet and got nothing but 100% negative info about this condition with no hope for being cancer free and 100% certainty that I will die from this. I called my oncologist office "freaked out" and she told me they don't accept hopelessness in their office and for me to stay off the internet and stop this reading I was doing. She said every case is different and that I have years of life ahead of me. I do hope she is right. I am newly diagnosed and don't know much or what to expect. I will go in April 15th for CT scan of abdomen, chest, & pelvic and dye to let them see my lymph nodes better. I am at a center that deals with this rare form of cancer. So rare, I am told, that technically I should have died having my hysterectomy before getting this stuff. It is very disheartening to hear this news. When the doctor told me my diagnosis, I was brain-dead on impact. He asked if I had any further questions and of course, I didn't, as I couldn't even think at the time. Got home, started reading and jotted down a list of questions that I started getting in my brain along with those that friends & family were asking me. So when I go back I will get the answers and I am hoping I have the courage to even ask them. Sometimes we get the feeling that not knowing is better than knowing. But I do believe it is best to be as informed about your condition as possible. There is nothing like an ignorant patient, so don't be afraid. Be courageous, well-informed, and hopeful. GOD is ALIVE and HE does work miracles everyday upon the face of this EARTH. Seek comfort in HIS arms and HE will take care of you. That is what I am doing for now.....Best wishes and love.
  • Madhadder
    Madhadder Member Posts: 2 Member

    What center did you go to that deals with the rare form of cancer that you have?