angiosarcoma

bevans1942
bevans1942 Member Posts: 14
edited March 2014 in Sarcoma #1
I have been a lurker on this web site for a long time and I am seeing that our numbers are growing. I had angiosarcoma of the breast due to radiation 5 years ago.I had a masdectomy in April 2006 At this time I have had 2 surgeries since Sept 2010. This cancer has returned and is becoming more aggressive. My Dr. is not giving me any hope for survival. I have been to the Moffitt Cancer and talked to a Dr. that is a specialist in angiosarcoma.He had nothing to offer. I am also going to see a radiologist and a chemo Dr. there as well. Anyone out there that has been treated and won this battle? My local Dr. has offered me some radiation and I am still hearing that chemo does not work. They have told me that radiation is the only option and they gave me a list of side effects and problems I may have and that the radiation is pallative at best. I have not taked with the other 2 Drs. at Moffitt yet but I am wondering if it will be a repeat of what I have already been told.

I would appreciate any words of hope. I am very angry and feel that the Drs. are killing us. When I had the first breast cancer I had a lumpectomy and radiation. I had asked for a masdectomy and the Drs. said it was not neccessary and refused to do a masdectomy. If they had done what I asked or if I had found another Dr. or did not have the radiation I would be okay today. When you have radiation you sign a paper giving them permission to treat you. It states that the radiation could cause another cancer in the years to come. They don't tell you what types of cancer you may get or how long it may take to get it. Since they are offering radiation for the second time in the same area it may kill me anyway.
I am looking for survival options. Please feel free to e-mail me. I am looking for hope.

Comments

  • survivor9yrs
    survivor9yrs Member Posts: 57
    #2
    bevans1942
    hi,
    i can't even begin to tell you how sad i am to read of your prognosis. after 5 yrs, you would begin to hope, just maybe you have made it... i guess we can never say that. not with this cancer. my friend is coming up on 5ys. her drs. have said, they feel she is safe and it should not return. i wonder... as for me, i am 15 mos. free. always on guard. i too had lumpectomy and raddiation 10yrs ago. if only they had put a name to the cancer the radiation could have caused. if only..... there are alot of us who are saying that... i heard from a woman in england, when i first weent through this. she was at that time 6 yrs. free.. she had mastectomy and radiation. she went to florida and had radiation, sm. doses, 3 times a day.... i don't know what your circumstances were. how large your tumors was or how many. did they get clean margins of 2 cm. or more...did you do chemo? my friend and i have both had mastectomies and chemo. gemcitabine and taxoter... i know the chemo. question is still and if, but i would try anything... i also watch the site. maybe i can help someone. if those who post would only continue to do so, so we could track their progress. send me your email and i would be happy to help you in anyway i can. even if it is only to be a sounding board.
    survivor9yrs.
  • Hard2LetGo
    Hard2LetGo Member Posts: 1
    #3
    survivor9yrs said:

    bevans1942
    hi,
    i can't even begin to tell you how sad i am to read of your prognosis. after 5 yrs, you would begin to hope, just maybe you have made it... i guess we can never say that. not with this cancer. my friend is coming up on 5ys. her drs. have said, they feel she is safe and it should not return. i wonder... as for me, i am 15 mos. free. always on guard. i too had lumpectomy and raddiation 10yrs ago. if only they had put a name to the cancer the radiation could have caused. if only..... there are alot of us who are saying that... i heard from a woman in england, when i first weent through this. she was at that time 6 yrs. free.. she had mastectomy and radiation. she went to florida and had radiation, sm. doses, 3 times a day.... i don't know what your circumstances were. how large your tumors was or how many. did they get clean margins of 2 cm. or more...did you do chemo? my friend and i have both had mastectomies and chemo. gemcitabine and taxoter... i know the chemo. question is still and if, but i would try anything... i also watch the site. maybe i can help someone. if those who post would only continue to do so, so we could track their progress. send me your email and i would be happy to help you in anyway i can. even if it is only to be a sounding board.
    survivor9yrs.

    hello everyone,
    my 76 yr old
    hello everyone,
    my 76 yr old father was diagnosed with angiosarcoma. The tumor on his liver has spreaded the cancer to his upper spine. We have been told there is no cure, and chemo would kill him quicker than the cancer. I am the youngest daughter of 3 girls, so I am having a very hard time dealing with this. because my dad has been in my life, all of my life. And Once the test results showed the cancer. We took his ct scans, and records and films to a cancer center. The doctor told us, there wasn't anything that could be done, but give him the best quality of life we could. My dad is not bedridden or wheelchair bound. Although he has other medical illness, hes not even on heavy pain medication, just tylenol 3 with codiene. They have given him a life span of 6 mos to a year. I found some research that because this type of cancer is so deadly. That the longest anyone has lived was 5yrs. But didn't state how old the patient was. I have put my dad's life in the lord's hands. But I am also looking for support, hope and encouraging stories. I never knew how much distress, cancer could be on the patient and their loves one. So to everyone out there that is going through this struggle, may God bless you and keep you strong and increase your faith.

    hugsss
  • nerjeño
    nerjeño Member Posts: 4
    #4
    LIFE BEYOND ANGIOSARCOMA
    I´m an Spanish man living in Spain. So please acept my apologizes if my english is not too good .
    My father in law, now 85 years old, has suffered a head and neck angiosarcoma, wrongly diagnosed in 2006. Three years later, he was considered inoperable and said, no other treatment was possible, after five surgeries and 32 radiation treatments; all without success. After that, he was treated by a doctor with alternative techniques (electrotherapy, ozone therapy, high doses of Omega 3 DHA, mincroinmunoterapia, diet, nutritional supplements and herbal medicine. Since then the various tumor foci have been stabilized, reduced and, finally, they have disappeared. For almost 8 months there have been no new active focus and his latest analytical and tomography have been normal.
    Now I am writing a blog telling the story of this case and our experiences , hoping it can help other people now that actually or in the future could be affected by an angiosarcoma. The Blog can be viewed at the following link:
    http://historiadeunangiosarcoma.blogspot.com/
    About your comment, in spite of I´m not a doctor in my opiniòn, according with my experience about angiosarcoma, a breast angiosarcoma is a perfect candidate for electrotherapy. At least in our case has been a great result. Electroteraphy remove s the tumour locally. So I suggest you find a doctor who practices electrotherapy, and talk with him about than posibility.
    After that and to prevent a possible distance metastasis, you must control your diet, and take antioxidants and reinforce your inmune sistem. Ozonoteraphy, was a very good option in our case.
    I also recomend you the reading of the book "Anticancer", written for David Servan Schreiber. It was also very helpful in our case.

    Surgery, that is,normally the first election is not a very good election unless it is radical or the surgeons use "Mohs" surgery.

    I hope you can remove your angiosarcoma, because although it is difficult, is possible.

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