Embroynal Rhabdomyosarcoma Pelvic Region

angel2930
angel2930 Member Posts: 4
in Sarcoma #1
I have had a hard time finding information and/or families going through this type & location of Rhabdomyosarcoma. I was hoping to hear back from people affected by this type & location. My son is stage III and the doctors have no idea where the tumor originated from they think maybe from behind the abdominal wall/cavity. Because of the size and location they were unable to do surgery prior to starting chemo and radiation. They are hoping they maybe able to do a second look surgery at the end of chemo (ten months total without any setbacks aka low counts or regression). Regardless of the outcome I wanted to establish a topic more specific for information purposes. Please if you respond indicate region/stage. I feel it's hard to compare and/or receive information on some of the discussions when people do not list these stats.

Comments

  • jenninman3
    jenninman3 Member Posts: 2
    #2
    ERSM of pelvis and abdomin
    My son had this as well. He was stage 4 group 4. He had mets in the omentum and asities fluid as well.

    http://www.caringbridge.org/visit/zachcartwright. Web site with info.

    Email for me. Jenninman3@aol.com

    Hope this helps

    Jennifer
  • Liftupellie
    Liftupellie Member Posts: 1
    #3
    Rhabdo
    My daughter at 6 years of age was diagnosed with cancer. Main tumor lower left pelvic area and spread to lungs stage 4.
    After 10 months of treatment of chemo and aggressive radiation she was in remission less than 3 months. Oncologist gave 10% chance would come back in pelvis. But it did... This cancer is a monster. I would look into getting the tumor out if possible! Or maybe most of it.
    Look at proton beam therapy or cyber knife. Get many opinions. If your child is not at risk of tumor growing in other locations you may be able to take time for surgery. My daughters lungs were filled and therefore never could stop chemo to do surgery. But if I could have done it ... I would have. God Bless.
  • angel2930
    angel2930 Member Posts: 4
    #4
    Liftupellie said:

    Rhabdo
    My daughter at 6 years of age was diagnosed with cancer. Main tumor lower left pelvic area and spread to lungs stage 4.
    After 10 months of treatment of chemo and aggressive radiation she was in remission less than 3 months. Oncologist gave 10% chance would come back in pelvis. But it did... This cancer is a monster. I would look into getting the tumor out if possible! Or maybe most of it.
    Look at proton beam therapy or cyber knife. Get many opinions. If your child is not at risk of tumor growing in other locations you may be able to take time for surgery. My daughters lungs were filled and therefore never could stop chemo to do surgery. But if I could have done it ... I would have. God Bless.

    Rhabo
    We just got our ct scan results and they are still unable to remove the tumor because it is pressing on blood vessels in the sacrum area. The risk out weighs the benefit at this point. The tumor has shrunk. I wish I had known about the proton therapy, but unfortunately he already had radiation. Our doctors never mentioned it to us probably because we have an HMO (Kaiser) & when our son was diagnosed we were in complete stress mood & at the physicians mercy. I know Kaiser has a cyberknife facility in south san francisco we are located within the sacramento, ca region I will be talking with physicians about this so thank you for the help. I hope is well with your daughter I know we are only in the beginning stages of treatment compared to what you have been through may God bless you & all who have been affected by this horrible thing called cancer.
  • Chestah
    Chestah Member Posts: 3
    #5
    angel2930 said:

    Rhabo
    We just got our ct scan results and they are still unable to remove the tumor because it is pressing on blood vessels in the sacrum area. The risk out weighs the benefit at this point. The tumor has shrunk. I wish I had known about the proton therapy, but unfortunately he already had radiation. Our doctors never mentioned it to us probably because we have an HMO (Kaiser) & when our son was diagnosed we were in complete stress mood & at the physicians mercy. I know Kaiser has a cyberknife facility in south san francisco we are located within the sacramento, ca region I will be talking with physicians about this so thank you for the help. I hope is well with your daughter I know we are only in the beginning stages of treatment compared to what you have been through may God bless you & all who have been affected by this horrible thing called cancer.

    Rhabdo in pelvis
    Hi- i'm new to the survivors network but i'm a 22 year survivor of Embryonal Rhabdomyosarcoma in my abdomen and pelvis. I was dx when I was 18. It was never able to be fully resected because it was too entangled. You can message me here on CSN if you like or if you have any questions.

    Thanks!

    -Chestah
  • DHY
    DHY Member Posts: 2
    #6
    Chestah said:

    Rhabdo in pelvis
    Hi- i'm new to the survivors network but i'm a 22 year survivor of Embryonal Rhabdomyosarcoma in my abdomen and pelvis. I was dx when I was 18. It was never able to be fully resected because it was too entangled. You can message me here on CSN if you like or if you have any questions.

    Thanks!

    -Chestah

    Embryonal Rhabdo, stage IV
    Hi Chestah,

    It's great to know that you're long-term survivor. My husband was recently diagnosed with embryonal subtype as well, unfortunately it already mets to his spine at diagnosis. He currently undergoes chemo, just finish round 2. May I ask how old you were and at what stage at diagnosis? Would love to hear back from you. My email, yeungamd@gmail.com.
  • 4444mom
    4444mom Member Posts: 1
    #7
    Rhabdo in right cheek jaw muscle
    I am hoping to connect with other parents with teenage children dealing with Rhabdo. My 17 year old son has embryonal Rhabdo in the jaw muscle and the cervical lymph nodes. Surgery is not an option at this time and he has had 6 months of aggressive chemo and 28 radiation sessions so far. With still 6 months to go in the protocol. Before radiation started the tumor had only shrunk 33 percent so we are really hoping the radiation has done it's job. We will have more scans in a couple of months. If anyone would like to offer advice on how they dealt with this cancer or are going through it now as well, please email cgerlach@shaw.ca.
  • BIGHEDMICK
    BIGHEDMICK Member Posts: 4
    #8
    Hello, are you still around?

    Hello Angel. Just wanted to know what ever happened to your son. Probably won't get a response but I gotta try. Please email me at brendanjosephmccoy@yahoo.com. My son has a very close version of what your son is hopefully no longer experiencing.

Discussion Boards