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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@colleenyoung

@posi9, welcome.
I moved your post to this existing discussion so you can read the previous posts and get connected by replying to the group.
- Is anybody dealing with an angiosarcoma? https://connect.mayoclinic.org/discussion/angiosarcoma/

Here you can meet @amyqueenof4 @grizz20 @crackerjack @milo1 @mermaid7272 @brinys @chuckp @twinsisty1, who have experience with angiosarcoma.

I'm sorry to hear that the angiosarcoma of the breast has metastacized to your lungs. You ask what treatments people have had for metastatic angiosarcoma. May I ask what treatments have been suggested for you?

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Unfortunately it’s still the waiting game. Waiting for a lung biopsy. Radiation caused the cancer so that doesn’t sound like a realistic option, even though high doses apparently are effective , my understanding is that surgery is the best alternative for AS. Not sure how lung metastasis fits in with all this. Is surgery a possibility. I’m sure it boils down to every case is different. The waiting game is so stressful!

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Sorry to hear you are dealing with this as well. As rare as it is suppose to be, there seems to be a lot of it. Glad you are in surgery mode as the waiting game is so painful and surgery seems to be the best alternative. What country do you live in? Good luck with your upcoming surgery. You’ve got this 🙏

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@posi9

Unfortunately it’s still the waiting game. Waiting for a lung biopsy. Radiation caused the cancer so that doesn’t sound like a realistic option, even though high doses apparently are effective , my understanding is that surgery is the best alternative for AS. Not sure how lung metastasis fits in with all this. Is surgery a possibility. I’m sure it boils down to every case is different. The waiting game is so stressful!

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@posi9, thinking of you as you ride out the wait.

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@jbeck7406

I was diagnosed in dec Angiosarcoma in the breast had a mastectomy Jan 26 then was told I stil have more cancer cells so I have to go back in for another surgery feb 9 to remove a margin in breast

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@jbeck7406, just a quick note to wish you well with your post surgery recovery. I hope you'll write an update on how you are doing when you're able.

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@jbeck7406

I was diagnosed in dec Angiosarcoma in the breast had a mastectomy Jan 26 then was told I stil have more cancer cells so I have to go back in for another surgery feb 9 to remove a margin in breast

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I’m clear of Angiosarcoma as of now !
I’m curious if anyone has had Angiosarcoma in the breast without having /had radiation therapy due to a breast cancer prior?
I have never had cancer or radiation before and ended up with lump on breast and biopsy showed Angiosarcoma so I’m confused.

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I live in Nebraska and sometimes I wonder, but they did send my biopsy originally to the mayo clinic for pathology review , I’m trying to get second opinion overall at the Mayo currently just waiting to hear back from them . I don’t know why it’s taking so long

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@grizz20

I am responding to your group info on angiosarcoma.
My family member has angiosarcoma of the scalp-very very rare-& not much info for patient or family…she has had many surgeries on her scalp-tumors re occurred-radiation didn’t do a thing.
(2 times -each like 8 weeks)
Then chemo 2 times for a very long time.
She is a survivor.
She is a strong person with a lot of will.
Diagnosed in Oct 2019.
She is still alive and has not had new tumors in the last year.
She has no scalp left, so that is a good thing.
She has PETscans regularly- no indication of spread to other areas - she feels good considering -living her life -good days and down days.
Amazing gal. I love her! Sending hope to all of you-I never thought she’d be here living her life fully in 2022
Always have hope!!!

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I also have angioscarcoma and was cancer free until about a month ago. I had chemo, radiation and several surgeries, 5 years ago. I have recently had a biopsy on my head that showed angioscarcoma, luckily no metastasis. I was wondering how your family member's surgeon was able to cover the scalp after removal of the sarcoma. Any information you can provide would be greatly appreciated.
Hopefully she continues to do well. Sounds like she is an amazing women and survivor.

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My Angiosarcoma, which was diagnosed in 2019 was radiation induced..........caused from cancer surgery in 2006.

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I was diagnosed with Angiosarcoma in my liver on October 26th 2022. Started Taxol chemotherapy in November and get my 13th infusion tomorrow. No known cause for mine but my mother's side of the family had an uncle and first cousin pass from Angiosarcoma in the heart. November 22 prognosis from Kaiser Permanente oncologist was maybe 9 to 12 months with chemotherapy.. less than 6 months without.

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