Uterine Leiomyosarcoma, post chemo

Nanz1
Nanz1 Member Posts: 12
edited March 2014 in Gynecological Cancers (other than ovarian and uterine) #1
I was diagnosed in 2003 after having a hysterectomy for presumed fibroids. I was home after surgery before I got the bad news that it was LMS. I had radiation of the pelvis and then one year later a tumor appeared next to my retained cervix. My onc is calling this a persistence rather than a recurrence. I had another surgery to remove the cervix and the tumor. since then I have had chemo therapy with Gemzar and Taxotere. I am told I responded to the chemo but that 50% of those who respond are cured and 50% go on to have a recurrence and do not do well.
I am afraid every day and am having a hard time knowing how to live with the constant uncertainty and fear of death. I am trying to believe that I am going to be one of the ones in the "cure" group. Please write me with your own story or advice

Comments

  • groundeffect
    groundeffect Member Posts: 639 Member
    #2
    I believe we all have a fear of death, and the uncertainty can cause too much anxiety. Have you had bad menopausal symptoms? I had a lot of anxiety even though my cancers were both low stages - endometrial stage 1b, ovarian 1c. I was fortunate to not have to work at a "formal" job (for a company) through my surgery and chemo, but when I started interviewing, I felt I needed some help dealing with all of it.

    I found and joined a gynecologic cancer support group. Everyone who attends the group has some unique aspect of treatment, and it helps to hear how they're dealing with their lives and treatments. I highly recommend seeking out a group-the American Cancer Society office nearest to you should have information about what groups are meeting.

    I also talked to my family practice doctor because I was having mild menopausal symptoms, and described my anxiety. She recommended and prescribed Zoloft, and I'm now convinced that it's a wonderful thing for me. I won't try to say it's good for everyone, but it is something to consider if you're having too much anxiety, which can be detrimental to your health.

    If you can do something to make yourself feel better and in more control of your situation, try it! I joined Weight Watchers after I was done with chemo, and while I haven't lost much weight, I feel I'm feeding myself much better and am healthier for it.
  • ShirleyD
    ShirleyD Member Posts: 2
    #3
    Hi Nanz1,
    I am a IA/II endometrial cancer survivor TAH/BSO 1/2/04. My first year post op was filled with so much anxiety and fear that I developed a severe anxiety disorder. Fortunately a great counselor and medication has keep this all at bay. Also, a great site which I frequent Hystersisters.com has too provided me great support. Please stop by the Cancer Concerns discussion on that site and you will find Sisters who too can provide you with great support that have been or are at the same place as you with their journeys with uterine and other gyn cancers.
  • Nanz1
    Nanz1 Member Posts: 12
    #4
    ShirleyD said:

    Hi Nanz1,
    I am a IA/II endometrial cancer survivor TAH/BSO 1/2/04. My first year post op was filled with so much anxiety and fear that I developed a severe anxiety disorder. Fortunately a great counselor and medication has keep this all at bay. Also, a great site which I frequent Hystersisters.com has too provided me great support. Please stop by the Cancer Concerns discussion on that site and you will find Sisters who too can provide you with great support that have been or are at the same place as you with their journeys with uterine and other gyn cancers.

    thank you so much for the reply and info. I am on meds for anxiety and depression and I think they are helping too.
    how are you?
  • Nanz1
    Nanz1 Member Posts: 12
    #5
    groundeffect said:

    I believe we all have a fear of death, and the uncertainty can cause too much anxiety. Have you had bad menopausal symptoms? I had a lot of anxiety even though my cancers were both low stages - endometrial stage 1b, ovarian 1c. I was fortunate to not have to work at a "formal" job (for a company) through my surgery and chemo, but when I started interviewing, I felt I needed some help dealing with all of it.

    I found and joined a gynecologic cancer support group. Everyone who attends the group has some unique aspect of treatment, and it helps to hear how they're dealing with their lives and treatments. I highly recommend seeking out a group-the American Cancer Society office nearest to you should have information about what groups are meeting.

    I also talked to my family practice doctor because I was having mild menopausal symptoms, and described my anxiety. She recommended and prescribed Zoloft, and I'm now convinced that it's a wonderful thing for me. I won't try to say it's good for everyone, but it is something to consider if you're having too much anxiety, which can be detrimental to your health.

    If you can do something to make yourself feel better and in more control of your situation, try it! I joined Weight Watchers after I was done with chemo, and while I haven't lost much weight, I feel I'm feeding myself much better and am healthier for it.

    thank you so much for your message. I am out in the Palm Springs area and have hooked up with a center here but not many uterine cancers. Mostly breast so far. How are you? hope you are well.
  • MrsGrape
    MrsGrape Member Posts: 1
    #6
    Hello, I too was diagnosed with LMS of the uterus Jan 2004 - had a complete hysterectomy. Dr. thought she got it all but drs. at MD Anderson wanted me to go ahead with 4 rounds of chemo (taxotere & gemzar) just in case any of the cancer cells survived. So far, so good, just had my last ct scan and everything looked clear and it has been one year ago since i finished the chemo. Like you, it is a nightmare to allow yourself to sit around and wonder when and if it will come back - like a monster, huh? Mine was a stage 1 and contained in the uterus, but the mitosis was high - scary, I know.
  • Nanz1
    Nanz1 Member Posts: 12
    #7
    MrsGrape said:

    Hello, I too was diagnosed with LMS of the uterus Jan 2004 - had a complete hysterectomy. Dr. thought she got it all but drs. at MD Anderson wanted me to go ahead with 4 rounds of chemo (taxotere & gemzar) just in case any of the cancer cells survived. So far, so good, just had my last ct scan and everything looked clear and it has been one year ago since i finished the chemo. Like you, it is a nightmare to allow yourself to sit around and wonder when and if it will come back - like a monster, huh? Mine was a stage 1 and contained in the uterus, but the mitosis was high - scary, I know.

    I just now read your reply. Thank you so much for your reply. Yeah it is scary. I wasn't diagnosed until after my hysterectomy. they left my cervix in. I had radiation and then had a persistence meaning that the original tumor grew again attached to the cervix that was left in. I had another surgery to remove it and then had chemo. I guess I am just scared and kind of tired of the whole thing. Any suggestions on how to let go of the fear?
  • Nanz1
    Nanz1 Member Posts: 12
    #8
    MrsGrape said:

    Hello, I too was diagnosed with LMS of the uterus Jan 2004 - had a complete hysterectomy. Dr. thought she got it all but drs. at MD Anderson wanted me to go ahead with 4 rounds of chemo (taxotere & gemzar) just in case any of the cancer cells survived. So far, so good, just had my last ct scan and everything looked clear and it has been one year ago since i finished the chemo. Like you, it is a nightmare to allow yourself to sit around and wonder when and if it will come back - like a monster, huh? Mine was a stage 1 and contained in the uterus, but the mitosis was high - scary, I know.

    thanks Mrs Grape. It's good to know you are out there
  • groundeffect
    groundeffect Member Posts: 639 Member
    #9
    Nanz1 said:

    I just now read your reply. Thank you so much for your reply. Yeah it is scary. I wasn't diagnosed until after my hysterectomy. they left my cervix in. I had radiation and then had a persistence meaning that the original tumor grew again attached to the cervix that was left in. I had another surgery to remove it and then had chemo. I guess I am just scared and kind of tired of the whole thing. Any suggestions on how to let go of the fear?

    Anxiety is such a bad thing! I took yoga classes a couple of years before I was diagnosed, but the yoga breathing I learned there has been invaluable to me since then. It helped reduce my anxiety before my tests and chemo, and it still helps me when I need it. I highly recommend trying it. I'm sure you could find a description on the internet, or on a tape from the library. You don't have to worry about falling asleep in yoga class, or snickering when someone else does and snores! Sorry, I just had to throw that in-they should have thrown me out...
  • Nanz1
    Nanz1 Member Posts: 12
    #10
    groundeffect said:

    Anxiety is such a bad thing! I took yoga classes a couple of years before I was diagnosed, but the yoga breathing I learned there has been invaluable to me since then. It helped reduce my anxiety before my tests and chemo, and it still helps me when I need it. I highly recommend trying it. I'm sure you could find a description on the internet, or on a tape from the library. You don't have to worry about falling asleep in yoga class, or snickering when someone else does and snores! Sorry, I just had to throw that in-they should have thrown me out...

    You are too funny. were you the one who fell asleep of were you the one snickering at someone else? I'll pick up a YOGA tape or go to a class. I think it would help. Thanks Ground
  • groundeffect
    groundeffect Member Posts: 639 Member
    #11
    Nanz1 said:

    You are too funny. were you the one who fell asleep of were you the one snickering at someone else? I'll pick up a YOGA tape or go to a class. I think it would help. Thanks Ground

    I had a VERY hard time fighting off out-and-out laughing at that class. It was a young woman near me who was snoring. Everything was very quiet and dark (quiet except for her!).
  • toKarla
    toKarla Member Posts: 1
    #12
    How are you?
    My sister was just diagnosed , in much the same manner you were... how are you today? Your post is dated back to 2005 and I would love to know you are well.
  • Fully_Present
    Fully_Present Member Posts: 5
    #13
    toKarla said:

    How are you?
    My sister was just diagnosed , in much the same manner you were... how are you today? Your post is dated back to 2005 and I would love to know you are well.

    3 1/2 year survivor of Uterine Leiomyosarcoma
    Hi. It has been a long time since anyone posted on this thread, but for those who find it, I am a long term survivor of ULMS. I have a blog that is positive and uplifting, centering on ways to de-stress and support the immune system. Come visit me and other ULMS survivors at uterine-leiomyosarcoma.blogspot.com, or on facebook, too.
  • denisegerken
    denisegerken Member Posts: 2
    #14
    Fully_Present said:

    3 1/2 year survivor of Uterine Leiomyosarcoma
    Hi. It has been a long time since anyone posted on this thread, but for those who find it, I am a long term survivor of ULMS. I have a blog that is positive and uplifting, centering on ways to de-stress and support the immune system. Come visit me and other ULMS survivors at uterine-leiomyosarcoma.blogspot.com, or on facebook, too.

    ULMS

    Hello I am so happy to hear your wonderful news! My mom was diagnosed in 2005 and was disease free until 2011 that we know of, since she has had no scans since then. She now has lost 12 pounds in last 2 months and is having back pain, we are so nervous! Have you had any complications?

  • denisegerken
    denisegerken Member Posts: 2
    #15
    Fully_Present said:

    3 1/2 year survivor of Uterine Leiomyosarcoma
    Hi. It has been a long time since anyone posted on this thread, but for those who find it, I am a long term survivor of ULMS. I have a blog that is positive and uplifting, centering on ways to de-stress and support the immune system. Come visit me and other ULMS survivors at uterine-leiomyosarcoma.blogspot.com, or on facebook, too.

    ULMS

    Hello I am so happy to hear your wonderful news! My mom was diagnosed in 2005 and was disease free until 2011 that we know of, since she has had no scans since then. She now has lost 12 pounds in last 2 months and is having back pain, we are so nervous! Have you had any complications?

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