Is anybody dealing with an angiosarcoma?

First of all my heart goes out to you. My husband was diagnosed 10 years ago at 52 with Angiosarcoma in the liver. Went through long grueling treatment but was fortunate we found a doctor that thought outside the box. Tumor was right in the middle of liver and no way to remove it and still have the 20% to live. So they tricked his liver into growing so they could remove it. There were some complications along the way. Pleural effusion in lung that they ended up gluing his lung to rib cage to keep it from filling with fluid. We later found out he was exposed to ionizing radiation in the service which could be a cause for it. He just recently was diagnosed with prostate cancer. But all in all is doing as good as can be expected. Just curious if anyone has had a reoccurrence of the Angiosarcoma years later in a different spot since it is a cancer of the lining of the blood vessels, it could be lurking anywhere. Any new tests/markers out there to possibly prevent it from returning or catching it early enough. We realize he was extremely lucky they found it when they did and was totally by accident since he had no symptoms.

@claryssa, I'm not sure if you saw the post that @hopeful33250 made to @bigkevh20 about angiosarcoma specialists at Mayo Clinic. In case you didn't, here is more info about angiosarcoma Care at Mayo

--Angiosarcoma, Doctors, Departments
https://www.mayoclinic.org/diseases-conditions/angiosarcoma/doctors-departments/ddc-20350249
And the link if you would like to inquire about a second opinion at Mayo: http://mayocl.in/1mtmR63

Sounds like a team approach is what you're looking for.

I am currently working on getting a second opinion. I just met with the radiation doctor who seemed to give me more insight than my oncologist. The options are mastectomy and/or radiation. My lump was small, over 1 cm. Before making a decision, I want to gather as much information as possible. I'm currently working on finding a doctor who has some experience with angiosarcomas that are not radiation induced.

Thank you!!

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.

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

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?

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.

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?

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