1. < Sarcoma

Is anybody dealing with an angiosarcoma?

Posted by amyqueenof4 @amyqueenof4, Sep 4, 2022

Is anybody dealing with an angiosarcoma? My fiancé is 48 and was diagnosed in January. It has been in two different locations already.

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twinsisty1 | @twinsisty1 | Oct 4, 2022
In reply to @mermaid7272 "I had angiosarcoma about 10-12 years ago, and was in my upper chest wall . It..." + (show)
@mermaid7272

I had angiosarcoma about 10-12 years ago, and was in my upper chest wall . It is, as you probably have learned,
a cancer of the lining of a blood vessel. And extremely rare. Men who have worked in the manufacturing of certain types of plastic are prone to get it. (I am neither!) There are other causes, & I suggest you research it with Google.
Mine started as a very odd-colored bruise that did not hurt, it disappeared, then reappeared in the same place. My dr. said it was nothing, but I insisted she biopsy it. She finally did, and when results came back, said she had never heard of it! I got a new dr.!
I had surgery to remove it, & had no more trouble with that particular cancer. I am one of the fortunate ones. Good luck with your friend, and learn as much about it as you can.

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I also developed mine after breast cancer. My doctor spotted it right away. Had it removed last year . Have Cat Scan every three month since. Clean so far except for a large kidney stone I had to have removed. He believes mine is from all the radiation I had after two procedures for my breast cancer. Have had a total mastectomy after he found it.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 24, 2022
In reply to @chuckp "Thank you for your responses, I am Chuck Park. 78 hrs old. Diagnosed with angiosarcoma cancer..." + (show)
@chuckp

Thank you for your responses,

I am Chuck Park. 78 hrs old. Diagnosed with angiosarcoma cancer in scalp 7-27-22. Removed surgically 8-15-22. Pathology report showed cancer removed completely with close margins. As a precaution did re-excision with wider margins 8-29-22. I have been receiving treatment at the VA Loma Linda, California. The Cancer Board at VA recommend I do radiation treatments. I have not seen an oncologist. I am working on getting an appointment through my primary care VA doctor.

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@chuckp, when will you start radiation?

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chuckp | @chuckp | Sep 9, 2022

Thank you for your responses,

I am Chuck Park. 78 hrs old. Diagnosed with angiosarcoma cancer in scalp 7-27-22. Removed surgically 8-15-22. Pathology report showed cancer removed completely with close margins. As a precaution did re-excision with wider margins 8-29-22. I have been receiving treatment at the VA Loma Linda, California. The Cancer Board at VA recommend I do radiation treatments. I have not seen an oncologist. I am working on getting an appointment through my primary care VA doctor.

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1 reply
amyqueenof4 | @amyqueenof4 | Sep 9, 2022
In reply to @chuckp "Just diagnosed with angiosarcoma cancer any information I can get. The info on the internet looks..." + (show)
@chuckp

Just diagnosed with angiosarcoma cancer
any information I can get. The info on the internet looks pretty serious

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Angiosarcoma is very rare and very aggressive. My fiancé was diagnosed back in January. Even his doctors at Standford in Palo Alto California are trying unconventional things with him.
Where is your cancer? Have you seen an oncologist yet? My fiancé and I got second and third opinions. You have to be your own advocate!

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milo1 | @milo1 | Sep 8, 2022

Chuck, Dr. Ravi at MD Anderson specializes in angiosarcoma. You should get a second opinion from him.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 8, 2022
In reply to @chuckp "Just diagnosed with angiosarcoma cancer any information I can get. The info on the internet looks..." + (show)
@chuckp

Just diagnosed with angiosarcoma cancer
any information I can get. The info on the internet looks pretty serious

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Welcome, Chuck. While angiosarcoma is rare, we have members here I can connect you with like @amyqueenof4 @grizz20 @mermaid7272 and @milo1.

Chuck, where was your sarcoma located? What treatment did you have and how are you doing?

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chuckp | @chuckp | Sep 8, 2022

Just diagnosed with angiosarcoma cancer
any information I can get. The info on the internet looks pretty serious

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3 replies
amyqueenof4 | @amyqueenof4 | Sep 6, 2022
In reply to @milo1 "Does anyone know if Angiosarcome changes someone's personality or is it the chemotherapy? My husband has..." + (show)
@milo1

Does anyone know if Angiosarcome changes someone's personality or is it the chemotherapy? My husband has it on his scalp and neck.

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I don’t know that the angiosarcoma does it or if it’s just the “c” word in general. With chemo making people sick and dealing with such a rare aggressive cancer could change anyone.

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milo1 | @milo1 | Sep 5, 2022

Does anyone know if Angiosarcome changes someone's personality or is it the chemotherapy? My husband has it on his scalp and neck.

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amyqueenof4 | @amyqueenof4 | Sep 4, 2022
In reply to @colleenyoung "Hi @amyqueenof4, welcome. As you likely already know, angiosarcoma is quite rare. I’m tagging fellow members..." + (show)
@colleenyoung

Hi @amyqueenof4, welcome. As you likely already know, angiosarcoma is quite rare. I’m tagging fellow members @grizz20 @crackerjack @mermaid7272 @brinys, who have experience with angiosarcoma either as a patient or caregiver, like you.

I know that angiosarcoma can start anywhere in the body. Where did it appear for your fiancé? What treatments has he had?

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It appeared on top of his bladder and grew up to 7cm- he had taxitol and radiation and for two months he was remission. Then 3 months ago his lung collapsed bc he was bleeding in his plura cavity. He was on a chest tube for over a month with two surgeries to get the bleeding to stop- they even tried blood clotting meds. Now they currently have him on taxotere with gemzare (Not sure of spelling) and the doctors at standford have never seen angiosarcoma do this.

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