angiosarcoma

connie121559
connie121559 Member Posts: 4
in Breast Cancer #1
breast cancer 7 years ago, lumpectomy with chemo and radiation, possibly angiosarcoma being diagnosed. Looking for survivors, how was it treated, etc.

Comments

  • eileent54
    eileent54 Member Posts: 5
    #2
    Hi!
    You're in good company! Facebook Angiosarcoma Cancer- So many wonderful people, either with angiosarcoma, or loved ones with. We are even funding our own research. Also, go to www.angiosarcomaawareness.org Best of luck! Eileen
  • rastadot
    rastadot Member Posts: 4
    #3
    Angiosarcoma
    Quiet a scary time of your life. I was diagnosed with angiosarcoma in March of 2002 and I am a survivor! I had breast cancer in 1989 And a double mastectomy, then breast cancer again in 2000. In 2000 I had chemo but no radiation. With the angiosarcoma I had chemo of taxol, texotere. Shortly after had hyper fractionated radiation and another series of chemo that included cysplatnum (?). My prognosis was not good, but I am still here and healthy after eight years! No recurrence but am seeing the doctor at least 4 times a year. If you want any further info or support, I am here for you. Be positive.
  • connie121559
    connie121559 Member Posts: 4
    #4
    rastadot said:

    Angiosarcoma
    Quiet a scary time of your life. I was diagnosed with angiosarcoma in March of 2002 and I am a survivor! I had breast cancer in 1989 And a double mastectomy, then breast cancer again in 2000. In 2000 I had chemo but no radiation. With the angiosarcoma I had chemo of taxol, texotere. Shortly after had hyper fractionated radiation and another series of chemo that included cysplatnum (?). My prognosis was not good, but I am still here and healthy after eight years! No recurrence but am seeing the doctor at least 4 times a year. If you want any further info or support, I am here for you. Be positive.

    angiosarcoma
    Thank you soooooo much I really needed to hear from someone who is surviving this. I will know more by the end of this week. So many questions: Where is the best place for treatment? So little seems to be known about this? Can I ask where were you treated? Is there many doctors out there that know about this? I have read 3 studies so far and it seems to becoming more common, but the doctor told me less that 1 percent of the people that recieve radaiation get this? What are you hearing?
  • rastadot
    rastadot Member Posts: 4
    #5
    connie121559 said:

    angiosarcoma
    Thank you soooooo much I really needed to hear from someone who is surviving this. I will know more by the end of this week. So many questions: Where is the best place for treatment? So little seems to be known about this? Can I ask where were you treated? Is there many doctors out there that know about this? I have read 3 studies so far and it seems to becoming more common, but the doctor told me less that 1 percent of the people that recieve radaiation get this? What are you hearing?

    Angiosarcoma
    My oncogolist and surgeon are in orange county, California. I went to UCLA medical center in Los Angeles and also City of Hope for treatment advice. Below is a link to the UCLA information, it's actually a father and son team.

    UCLA's Jonsson Comprehensive Cancer Center : Frederick and Fritz ...
    When Dr. Frederick Eilber first began operating on sarcoma patients in the early 1970s in the new surgical oncology division at UCLA, most of his procedures were …
    www.cancer.ucla.edu/Index.aspx?page=383 · Cached pag

    It is a very rare cancer and a scary one at that. There really is not one proven method, but some treatments work and are more effective than others.

    I am very blessed that my treatments worked.

    Please keep me updated and keep in contact.

    -- Janeen
  • survivor9yrs
    survivor9yrs Member Posts: 57
    #6
    connie121559 said:

    angiosarcoma
    Thank you soooooo much I really needed to hear from someone who is surviving this. I will know more by the end of this week. So many questions: Where is the best place for treatment? So little seems to be known about this? Can I ask where were you treated? Is there many doctors out there that know about this? I have read 3 studies so far and it seems to becoming more common, but the doctor told me less that 1 percent of the people that recieve radaiation get this? What are you hearing?

    connie121559
    i too am a AS survivor.. almost 3yrs.. i had BC in 2000.. radiation and lumpectomy... in
    2009 AS appeared.. i had taxotere and gemzar, after surgery... i do not go to a big hospital or sarcoma center... the main thing with As is surgery... removing it all with good margins... it is very rare and agressive... but we can survive.. if i can be of any further help just keep posting.. i'll keep cking back..
    survivor 9yrs
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #7
    connie121559 said:

    angiosarcoma
    Thank you soooooo much I really needed to hear from someone who is surviving this. I will know more by the end of this week. So many questions: Where is the best place for treatment? So little seems to be known about this? Can I ask where were you treated? Is there many doctors out there that know about this? I have read 3 studies so far and it seems to becoming more common, but the doctor told me less that 1 percent of the people that recieve radaiation get this? What are you hearing?

    Connie, I don't know
    Connie, I don't know anything about this type of bc. I am wishing you good luck and I will be praying for you.

    You said you'd know more by the end of the week. Please post when you find out more.


    Hugs, Jan
  • connie121559
    connie121559 Member Posts: 4
    #8
    survivorbc09 said:

    Connie, I don't know
    Connie, I don't know anything about this type of bc. I am wishing you good luck and I will be praying for you.

    You said you'd know more by the end of the week. Please post when you find out more.


    Hugs, Jan

    angiosarcoma
    Surgoen called and said it showed aptical vasular leasions and benign lyphangiomi. This is what many many biopsys showed over the past 3 years. From my understanding breast angiosarcoma is VERY rare, the doctors told me less that 1 percent of breast cancer patients get this, but I happened to be one the biopsy came back suspious for. I am so thankful it cam back like the others. I have never been one to do much with computers but am soooo glad be able to communcate with other people and to learn what others have been through and what treatment they had. When I first started this journey and this diagnoses there didn't seem to be alot out there and all I heard was "there isn't much we can do." I went to a bigger facility about 8 hours from our home and that is where I doctor for this. Technology and treatment are changing so fast that I hope they will find a cure for anyone that has this.
  • rastadot
    rastadot Member Posts: 4
    #9
    connie121559 said:

    angiosarcoma
    Surgoen called and said it showed aptical vasular leasions and benign lyphangiomi. This is what many many biopsys showed over the past 3 years. From my understanding breast angiosarcoma is VERY rare, the doctors told me less that 1 percent of breast cancer patients get this, but I happened to be one the biopsy came back suspious for. I am so thankful it cam back like the others. I have never been one to do much with computers but am soooo glad be able to communcate with other people and to learn what others have been through and what treatment they had. When I first started this journey and this diagnoses there didn't seem to be alot out there and all I heard was "there isn't much we can do." I went to a bigger facility about 8 hours from our home and that is where I doctor for this. Technology and treatment are changing so fast that I hope they will find a cure for anyone that has this.

    NOT angiosarcoma
    I am so happy and relieved for you!! Stay positive!

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