splenic angiosarcoma

saydesnana
saydesnana Member Posts: 3
edited March 2014 in Sarcoma #1
Very rare. I've passed 5 years in remission and am searching for any other survivors of this cancer. Thus far NO RESPONSES come up when I type it in. Any help in finding other splenic angiosarcoma survivors would be greatly appreciated. Thank you.

Comments

  • madgino
    madgino Member Posts: 1
    #2
    Hi,
    My mother has been
    Hi,

    My mother has been diagnosed with splenic angiosarcoma. She has had surgey to have her spleen removed and is now having chemo.

    Would you please go into a little more detail about the treatment you had and maybe the nutrients / diet you started after being diagnosed.
  • shickman
    shickman Member Posts: 3
    #3
    angiosarcoma of spleen
    I have just received a biopsy report with a diagnosis of high grade spindle cell angiosarcoma of spleen. Have a PET scan scheduled for Tuesday and am to see an oncology surgeon on Thursday. I am so frightened. Please share any info. You are the only person I have found with this disease. I will appreciate anything you have to offer.
  • shickman
    shickman Member Posts: 3
    #4
    madgino said:

    Hi,
    My mother has been
    Hi,

    My mother has been diagnosed with splenic angiosarcoma. She has had surgey to have her spleen removed and is now having chemo.

    Would you please go into a little more detail about the treatment you had and maybe the nutrients / diet you started after being diagnosed.

    angiosarcoma of spleen
    I now see there are three of us. I have just been diagnosed; have seen no oncologist yet; I will apreciate any words you may have. I have just received the biopsy report. Diagnosis is high grade spindle cell angiosarcoma.
  • natalie1611
    natalie1611 Member Posts: 4
    #5
    shickman said:

    angiosarcoma of spleen
    I have just received a biopsy report with a diagnosis of high grade spindle cell angiosarcoma of spleen. Have a PET scan scheduled for Tuesday and am to see an oncology surgeon on Thursday. I am so frightened. Please share any info. You are the only person I have found with this disease. I will appreciate anything you have to offer.

    hi i am writing to see if
    hi i am writing to see if you or anyone can help me with what has happened to my dad he has been diagnosed with this cancer angiosarcoma.
    He was admitted to hospital last week after complaining for two whole weeks of lower abdominal pains he went to 3 separate doctors, one his own gp and twice the hospital a and e, and each time was sent home and was told he had a torn muscle in his stomach.
    Then he felt a burst and had to be rushed to hospital he waited for over 3/4 hours in considerable pain to be told he had ruptured his spleen and needed emergency surgery to remove it. He had the operation they used some of the litres of blood that had leaked into his stomach and put it back into his body which is making me more worried. He was in intensive care for a week then was eventually allowed to come home where he has been since recovering.
    He got called back to the hospital 2 days ago and was told the devastating news that he has got angiosarcoma cancer and that the doctors will be in touch as this is a very rare form of cancer and they need to meet to discuss the case we are still waiting 3 days on with no answers and not knowing what is going to happen to him he is 56 years of age has a wife and 4 kids me being one of them and I don’t know what else to do but try and find people i can speak to about this while the nhs and doctors discuss what to do???
    Please could anyone give me some advice on treatments if you’ve heard of anybody else who’s spleen has ruptured with this cancer? what has happened? how long he’s got? if there is any drugs or anything we could try to help him anything we have had no answers no one knows anything about this its so upsetting and our family is devastated by this news

    please please help me with anything you can tell me about this

    Thank you,

    Miss Natalie Reynolds
  • eileent54
    eileent54 Member Posts: 5
    #6
    natalie1611 said:

    hi i am writing to see if
    hi i am writing to see if you or anyone can help me with what has happened to my dad he has been diagnosed with this cancer angiosarcoma.
    He was admitted to hospital last week after complaining for two whole weeks of lower abdominal pains he went to 3 separate doctors, one his own gp and twice the hospital a and e, and each time was sent home and was told he had a torn muscle in his stomach.
    Then he felt a burst and had to be rushed to hospital he waited for over 3/4 hours in considerable pain to be told he had ruptured his spleen and needed emergency surgery to remove it. He had the operation they used some of the litres of blood that had leaked into his stomach and put it back into his body which is making me more worried. He was in intensive care for a week then was eventually allowed to come home where he has been since recovering.
    He got called back to the hospital 2 days ago and was told the devastating news that he has got angiosarcoma cancer and that the doctors will be in touch as this is a very rare form of cancer and they need to meet to discuss the case we are still waiting 3 days on with no answers and not knowing what is going to happen to him he is 56 years of age has a wife and 4 kids me being one of them and I don’t know what else to do but try and find people i can speak to about this while the nhs and doctors discuss what to do???
    Please could anyone give me some advice on treatments if you’ve heard of anybody else who’s spleen has ruptured with this cancer? what has happened? how long he’s got? if there is any drugs or anything we could try to help him anything we have had no answers no one knows anything about this its so upsetting and our family is devastated by this news

    please please help me with anything you can tell me about this

    Thank you,

    Miss Natalie Reynolds

    splenic angiosarcoma
    Hi Natalie- First off, I'm so sorry about your Dad and what you are all going through. My daughter had primary breast angiosarcoma and passed away in February.
    Where are you located? You will want to find a major sarcoma center as angiosarcoma (AS) is an "orphan" cancer and regular doctors and even oncologists don't have the knowledge you need.I can help with suggesting centers if I knew what state you are in. Also, we have a WONDERFUL support group specifically for Angio- all kinds of people with all different types. Our web page is www.cureasc.org. More helpful at this point would be our facebook page which is Angiosarcoma Cancer group. I will look for you on there, we have people all over the world and we compare therapies, physicians, centers, outcomes and even have funded our own research for AS!! I urge you to join the page as you will find an outpouring of help and support. All the best, Eileen Henderson
  • natalie1611
    natalie1611 Member Posts: 4
    #7
    eileent54 said:

    splenic angiosarcoma
    Hi Natalie- First off, I'm so sorry about your Dad and what you are all going through. My daughter had primary breast angiosarcoma and passed away in February.
    Where are you located? You will want to find a major sarcoma center as angiosarcoma (AS) is an "orphan" cancer and regular doctors and even oncologists don't have the knowledge you need.I can help with suggesting centers if I knew what state you are in. Also, we have a WONDERFUL support group specifically for Angio- all kinds of people with all different types. Our web page is www.cureasc.org. More helpful at this point would be our facebook page which is Angiosarcoma Cancer group. I will look for you on there, we have people all over the world and we compare therapies, physicians, centers, outcomes and even have funded our own research for AS!! I urge you to join the page as you will find an outpouring of help and support. All the best, Eileen Henderson

    hi eileen thanks for your
    hi eileen thanks for your reply,
    we are based in liverpool, UK. Do you know where any sarcoma centers are in the Uk? or anyone in the Uk that specifies in A.S? We went back the other day and was told it has spread to his liver he has 2-3 months without treatment and anything upto a year with chemo. I dont feel that the doctors really know much about this I cant help but feel that if we met with someone who deals with this more and has more knowledge about this we would have a better chance of getting the correct care and treatment that my dad needs.

    Im really sorry to hear of your loss of your daughter it is a terrible terrible cancer and needs more people looking and learning about it because right now there is not enough information or advice given, so you are doing a great job what you are doing.

    please can you let me know asap if you know of anyone or any organisation we could contact to help us

    thanks again and i look forward to your reply

    natalie
  • shickman_niece
    shickman_niece Member Posts: 1
    #8
    shickman said:

    angiosarcoma of spleen
    I now see there are three of us. I have just been diagnosed; have seen no oncologist yet; I will apreciate any words you may have. I have just received the biopsy report. Diagnosis is high grade spindle cell angiosarcoma.

    Sorry to report
    I'm so sorry to report my Aunt Sandra passed away from angiosarcoma of the spleen. She went to Emory University in Atlanta but it took them about a week to figure out what the treatment plan would be. The treatment plan they offered was nonspecific to this rare disease. I pray that more research will go into this specific area. If you are coming to this site because you have this diagnosis, I will pray for you.

    CB
  • stevenanthony
    stevenanthony Member Posts: 1
    #9
    shickman said:

    angiosarcoma of spleen
    I have just received a biopsy report with a diagnosis of high grade spindle cell angiosarcoma of spleen. Have a PET scan scheduled for Tuesday and am to see an oncology surgeon on Thursday. I am so frightened. Please share any info. You are the only person I have found with this disease. I will appreciate anything you have to offer.

    Primary splenic angiosarcoma
    I am being treated for primary splenic angiosarcoma, stage IV, high grade. This was caused by radiation I had to my spleen 32 years ago as part of treatment for an unrelated cancer.
    My angiosarcoma was diagnosed following a partial splenic rupture on 3/28/12. It had metastasized to multiple sites in my liver and (presumably) elsewhere in my body.

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