New to this Message board, Hello to all.

feathers4
feathers4 Member Posts: 7
edited March 2014 in Gynecological Cancers (other than ovarian and uterine) #1
I had uterine cancer in 1991,I went thru 3 months of internal radiation and have suffered thru all the radiation necrosis I received due to that, I couldn't work for 6 years and am finally on meds that allow me a semi normal life. I had a mammogram last Thursday, and I just found out yesterday that I have a lump in my breast, I had many ultrasound and scanning tests today and am awaiting my scheduling of the biopsy, doctor said he is concerned by what he sees, he said he wishes he could tell me not to worry but he can't, and that it is not a cyst or fibroid, but a solid mass. To say that all the fears of 10 years ago have not come back to me is way off course. Cannot sleep, cannot eat, and cannot stop these tears. Looking for friends and support from those who have gone or are going through this too.

Comments

  • dedec30
    dedec30 Member Posts: 5
    #2
    My mom has just been diagnosed with uterine cancer. I am totally foreign to this but am trying to find out all I can. I am so sorry for your pain. I cried last night and couldn't sleep from worrying. My mother will have surgery next week to have a hysterectomy.
  • lizzie2
    lizzie2 Member Posts: 2
    #3
    I have had leiomyosarcoma of the uterus 11years ago. It was in a fibroid tumor and my uterus was removed and ovaries. I was cancer free for 6 years and it returned to my lung. Surgery removed the cancer still I did not take treatment because they said there was no treatment that would work. I was cancer free for two years and it went to my small intestines. Surgery removed that still no treatment. A year later or so later it was back in my lung and more surgery. Treatment was suggested and I refused. Six month later it was back in my lung and lymph nodes on my aorta but this time they suggested chemo gemzar which seems to work this cancer to shrink the cancer so I could have surgery. It worked and I had surgery then more chemo. This month I had my cat scan and everything shrunk even more. So now it is wait and watch. It has been an incredible 11 years.
  • montana
    montana Member Posts: 2
    #4
    lizzie2 said:

    I have had leiomyosarcoma of the uterus 11years ago. It was in a fibroid tumor and my uterus was removed and ovaries. I was cancer free for 6 years and it returned to my lung. Surgery removed the cancer still I did not take treatment because they said there was no treatment that would work. I was cancer free for two years and it went to my small intestines. Surgery removed that still no treatment. A year later or so later it was back in my lung and more surgery. Treatment was suggested and I refused. Six month later it was back in my lung and lymph nodes on my aorta but this time they suggested chemo gemzar which seems to work this cancer to shrink the cancer so I could have surgery. It worked and I had surgery then more chemo. This month I had my cat scan and everything shrunk even more. So now it is wait and watch. It has been an incredible 11 years.

    I have searched for weeks to find a leiomyosarcoma survivor who had treatment. I had a medium sized lms removed the end of January - it had not spread, but had a staging of 3 - I was in Montana, no one knew anything about it - I've ended up at ucla and am having 5 weeks of radiation treatment. No one seems to have any answers about whether chemo should be done and if so what - I am wondering how you are doing and pray the last treatment worked. Bless you.
  • pmerkle
    pmerkle Member Posts: 1
    #5
    lizzie2 said:

    I have had leiomyosarcoma of the uterus 11years ago. It was in a fibroid tumor and my uterus was removed and ovaries. I was cancer free for 6 years and it returned to my lung. Surgery removed the cancer still I did not take treatment because they said there was no treatment that would work. I was cancer free for two years and it went to my small intestines. Surgery removed that still no treatment. A year later or so later it was back in my lung and more surgery. Treatment was suggested and I refused. Six month later it was back in my lung and lymph nodes on my aorta but this time they suggested chemo gemzar which seems to work this cancer to shrink the cancer so I could have surgery. It worked and I had surgery then more chemo. This month I had my cat scan and everything shrunk even more. So now it is wait and watch. It has been an incredible 11 years.

    I was diagnosed with leimyosarcarma last June. After my hysterectomy I had some breathing problems and was rushed to the xray room at which time it was found that I had bloodclotts on my lungs as well as some spots that had not been there berfore the surgery. The spots were tested and were found to be positive. I started chemo in August which was Adriamiasine. November 23 the spots were found to have gone down in size. February 13 this year they had started to grow again. I started chemo again, the first week was gemsidobene and the second week was gemsidobene as well as taxitere. This realy burned my insides up and took my white blood count down to 119. I am getting back to normal as far as the energy, my hands are a mess and I continue to keep them lathered with lotion to keep them from cracking open. I will see the doctor next week to figure out what the next step to chemo will be. The last one really made me step back a couple of steps. Do you have any advice for me? This is my first time in talking to anyone with this cancer. Thank you very much Peggy
  • greyhound
    greyhound Member Posts: 2
    #6
    pmerkle said:

    I was diagnosed with leimyosarcarma last June. After my hysterectomy I had some breathing problems and was rushed to the xray room at which time it was found that I had bloodclotts on my lungs as well as some spots that had not been there berfore the surgery. The spots were tested and were found to be positive. I started chemo in August which was Adriamiasine. November 23 the spots were found to have gone down in size. February 13 this year they had started to grow again. I started chemo again, the first week was gemsidobene and the second week was gemsidobene as well as taxitere. This realy burned my insides up and took my white blood count down to 119. I am getting back to normal as far as the energy, my hands are a mess and I continue to keep them lathered with lotion to keep them from cracking open. I will see the doctor next week to figure out what the next step to chemo will be. The last one really made me step back a couple of steps. Do you have any advice for me? This is my first time in talking to anyone with this cancer. Thank you very much Peggy

    Hi Peggy, I just joined and read your post. I have also been looking for someone to talk to about treatments. I have stage 4B Leio and have exhausted most chemo options and am now in a Phase I Trial for Liposomal Encapsulated Taxel. Have just had my first treatment two weeks ago. So far, side effects are manageable. Mostly just a problem keeping RBC up without transfusions (cannot start Procrit until after second treatment) and body pain.

    I have been at this since November of 2001 and have been on some of the same drugs as you have been on. I was in a trial using Gemcitabene, Taxel and Carboplatin...did not work. I was also on a form Adria- Lipsomal Encapsulated Doxorubicin. I had such severe chemical burns on my hands and feet after only two treatments that my dose had to be cut in half after a six week recovery period. It did some good. I was able to have a liver resection which kept me off chemo from April 2003 until January 2004.
  • maier
    maier Member Posts: 3
    #7
    lizzie2 said:

    I have had leiomyosarcoma of the uterus 11years ago. It was in a fibroid tumor and my uterus was removed and ovaries. I was cancer free for 6 years and it returned to my lung. Surgery removed the cancer still I did not take treatment because they said there was no treatment that would work. I was cancer free for two years and it went to my small intestines. Surgery removed that still no treatment. A year later or so later it was back in my lung and more surgery. Treatment was suggested and I refused. Six month later it was back in my lung and lymph nodes on my aorta but this time they suggested chemo gemzar which seems to work this cancer to shrink the cancer so I could have surgery. It worked and I had surgery then more chemo. This month I had my cat scan and everything shrunk even more. So now it is wait and watch. It has been an incredible 11 years.

    Hi Lizzie2-
    I too have been diagnosed with Uterine Leiomyosarcoma on 6/24/04 after a routine hysto. to remove a large fibroid. They say I'm lucky it was caught so early, apparently the tumor was large (1 1/2 x football) but the cancer was small & encapsulated. So I had 1 CT Scan thur far which was clear. Still I am sore and trying to recover from the hysto. I have 3 small kids and relaxing is not an option so I think I over so it. But every ache & pain is a worry. Anyway, they recommend just doing pelvics every 2 months and CTScans every 3 months for 2 years. I am terrified, the more I read about this the worse prognosis it it. They said after that it would be extremely rare to recur after 5 years. How are you doing now? I wish you the best,

    By the way is this considered Uterine Cancer or Sarcoma Cancer?

    Heather

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