Is anybody dealing with an angiosarcoma?

@wiola, have you started treatment? How are you doing?

Hi,
I was diagnosed (this February) with angiosarcoma of liver that is spread within the liver. About to start paclitaxel. Curious what chemo didn't work for you and what immunotherapy did work. I'm also connected to NW in Chicago (we probably see the same oncologist there), but am going for second opinion at MDAnderson.

Hi @lim21, it sounds like your father is getting attentive care. Is he being treated at a major cancer center? How is he doing with radiation?

Yes - I have angio sarcoma and it affected the spleen and I developed secondary liver cancer. This was September 2023 - 2 different types of chemo didn’t work and I am now on Immunotherapy since August 2024. Unfortunately it’s incurable so we all live on borrowed time. Even went to the Mayo Clinic for a 2nd opinion but was told the same. I also have adrenal insufficiency which made me extremely exhausted and lost all appetite. This is a never ending battle and like your father I am connected to NW Hospital in Chicago for the rest of my life. Don’t lose hope - I feel better now with this therapy.

My father was diagnosed with angiosarcoma at the beginning of this year. He went to the doctor because of extensive blood in his stool. They ran many ct scans and MRI’s.
The surgeon at the hospital found a decent sized tumor in his rectum. It was removed and within 1 week “sprinkles” of cancer/tumers were found around surgery site.

His hemoglobin levels has been extremely low the entire time he has been going through this. He has had over 40 units of blood since January 3rd of this year. Doctors have told us he will require blood transfusions weekly because he is constantly going low. No signs of blood buildup anywhere found in body.

He is hooked to tpn for nutrition through iv because he cannot eat with blockage.

CT scans now showing spreading into abdominal wall, pelvis pushing on bladder?, and spot in lung. He also has an obstruction so he has a gtube inserted into his stomach to relieve fluids/stool.

This is all new to us so I’m trying to understand the doctors as best as possible.

He started radiation treatment this week. They are doing 5 sessions. He has 2 down and 3 to go.

I don’t know what to expect and I hope he is in the best care. This has happened so quickly and I have faith we will beat the odds. I wish I would have found this site before now.
Any advice or thoughts please share. I’m so sorry you all have had to go through these things. It is very hard on me and I’m just his son.

I’ve never heard of Natera but definitely going to look into that. Originally was told if it doesn’t return within 5 years he would probably be okay. They did things a bit unconventional with him. They used the chemo beads to shrink the tumor enough to do the resection but chose not to do chemo after. Felt it may do more damage than good in his case and since he was only 52 and in good health otherwise. Since he had made it through 8 years with no recurrence we thought our cancer days were over till this past fall with a completely new cancer. It makes me concerned that maybe his previous cancer was a contributing factor to this one. But nobody seems to know. Hope all goes well on the 21st for you, you will be in my thoughts and prayers.

They say it’s a new primary I guess because it was Carcinoma. He had his prostate removed in September. They did follow him closely for the first 5 years for the Angiosarcoma although since then there has been no real follow up per se. It makes me concerned with this new cancer diagnosis whether we should just make an appointment and ask for the scans to be certain it is still in remission/disease free. It has been 9 years since they found/resected his liver. He was 52 when he was first diagnosed.

Your Dr. can set you up with Natera blood draws every so often which can track cancer cell levels in the blood to show remission and/or return/increase in cancer cells to catch its return early. I just finished my second round of chemo for stage 4 bladder cancer which is angiosarcoma. I head back to MD Anderson the 21st to get new scans to see if the chemo is working. Natera is coming next week for 3rd blood draw. They can come to your house to be convenient. Hope that your husband remains in remission!

A belated welcome, @droth05. I really appreciate hearing your and your husband's journey with angiosarcoma of the liver. I'm sure @claryssa @bigkevh20 and others here are too.

I'm sorry to hear about your husband's recent diagnosis with prostate cancer now. You may wish to join the informative and supportive discussions here:
- Prostate Cancer support group https://connect.mayoclinic.org/group/prostate-cancer/

You also ask about angiosarcoma recurrence. Is the prostate cancer a new primary cancer? Is his team also suspecting a recurrence of angiosarcoma? What follow-up schedule and testing does he have?

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.