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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@chuckp

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

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This is Mulkey 518 - so sorry I have been responding elsewhere in this group and did not know that there was a group dedicated to ANGIOSARCOMA. As of 10/17/23 - I was diagnosed with RIA(Radiation Induced ANGIOSARCOMA) as a result from receiving radiation from a previous 2014 breast cancer. My response here today 12/4/23 is a year after your posting from 2022– so is there anything that you can tell me about your treatment of ANGIOSARCOMA??

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My mom was diagnosed with Angiosarcoma last year in July, Due to radiation treatments for Breast Cancer after having her breast removed in 2018. It was located in between her ribs. She was with Kaiser also, but I don't understand why they would encourage my mom to do radiation if its known for causing this type of cancer! They stated they don't know much about this form of cancer, because it's rare, so why send people through Chemotherapy and more radiation?! In my mom's case, she was in Chemotherapy for 3 months, and a couple rounds of radiation. Nevertheless, just 3 months later she lost her battle. The cancer had begun to spread the minute she started Chemotherapy! I am praying for every diagnosed with this form of cancer, and I'm currently looking forward to launching a foundation in honor of my mom, and those who have also lost their battle! My hope is to spread awareness, explore and promote other treatment options, and support the families of those who are currently battling Angiosarcoma! May God be with us all.

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@colleenyoung

@amicusdedeus, how are you doing on chemo? How often do you get an infusion?

@jbeck7406, did you get a second opinion?

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No unfortunately I haven’t , after surgery everything looks clear, march 28th I have a CT scan on lung so I’m guessing I’ll just wait and see how that turns out then go from there.

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jbeck7406 - no second opinion yet. I am with Kaiser, and they have review teams that bring several voices into pathology, radiology and even my Oncologist has team reviews of their opinions. I will be getting some second opinions outside Kaiser soon. My plan is to get this first round of chemo done, then travel some including second opinions when I am either done with chemo (they really only have one option right now with taxol - which they say will stop helping any soon...) and traveling while on chemo is rough for sure.
I am getting infusion once a week. 13 infusions so far. Oncologist adjusted dosage to make my side effects a little less (helping quality of life a bit) which helps but after taking a short trip i know to do any more i want to stop the chemo for at least two weeks. I have neuropathy pain in feet and hands which the chemo treatment makes much more intense. My hope is in the Lord..

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@amicusdedeus

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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@amicusdedeus, how are you doing on chemo? How often do you get an infusion?

@jbeck7406, did you get a second opinion?

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

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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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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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@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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