Is anybody dealing with an angiosarcoma?

My Angiosarcoma manifested itself in my spleen - at the time of diagnosis I was already Stage4. Paclitaxel didn't help, Doxorubicin almost killed me - I am now on Immunotheraphy once every 4 weeks. Unfortunately it is rare and terminal - I was your age when diagnosed and it's been 1 year - CT shows that the cancer is shrinking but I also have secondary liver cancer - like you, don't know either what to look forward to - still alive at 79!

What kind of chemo did you have? I had Paclitaxel and Doxorubicin but never experienced neuropathy. Now on Immunotheraphy

This is my case, as well. I had a painful lump on my breast. It was removed and tested positive for angiosarcoma. I met with my oncologist today who is sending me to radiation but the tumor board had suggested a mastectomy, ad well. I'm unsure about how many cases are similar to ours and what their treatments have been like.

@claryssa, there are a couple of other discussions specific to angiosarcoma of the breast that might interest you here:
- Just diagnosed with sarcoma in my breast
https://connect.mayoclinic.org/discussion/just-diagnose-with-sacorma-in-my-breast-what-can-i-use-or-be-used/
- Angiosarcoma of the breast caused by previous breast radiation
https://connect.mayoclinic.org/discussion/angiosarcoma-of-the-breast-caused-by-previous-breast-radiation/
Claryssa, what treatment option was decided upon?

I was diagnosed with angiosarcoma when a 5cm tumor was removed from my bladder.

Hello @bigkevh20 and welcome to Mayo Connect. From your post, I see that you have had surgery for a tumor in the bladder that was found to be an angiosarcoma.

As this is your first post on Connect, please feel free to share a bit more about this diagnosis, such as how long ago was your surgery, and what other treatments have been recommended as a follow-up to surgery.

Most importantly, how are you doing now?

Surgery was October 4th, PET scan on Oct 21st which showed Mets to lung, tail bone & left hip. Feeling better these last couple days. Still trying to find correct treatment for my. John’s Hopkins is working on that & I’m trying to get in MD A Anderson but Dr. Ravi hasn’t agreed to see me yet and insurance isn’t cooperating with their contracted rates so it looks like I’ll be paying out of pocket.

I can see that you are being proactive, @bigkev20, and that is a good plan. I am glad to hear that you are feeling better now. Will you continue to post updates as you seek the most appropriate treatment?

I will do my best to update as I go along. Does the Mayoclinic have an angiosarcoma specialist?

Hello @bigkevh20,

You asked about angiosarcoma specialists at the Mayo Clinic. Here is a link to the Mayo Clinic's website that will provide information about their specialists in this area,
--Angiosarcoma, Doctors, Departments
https://www.mayoclinic.org/diseases-conditions/angiosarcoma/doctors-departments/ddc-20350249
If you are interested in obtaining a consultation, here is a link with information about how to go about getting an appointment for a consultation,
http://mayocl.in/1mtmR63
I look forward to hearing from you again.