ANGIOSARCOMA CANCER

natalie1611

hi i am writing to see if anyone can help me with what has happened to my dad he has been diagnosed with this cancer angiosarcoma.
He was admitted to hospital last week after complaining for two whole weeks of lower abdominal pains he went to 3 separate doctors, one his own gp and twice the hospital a and e, and each time was sent home and was told he had a torn muscle in his stomach.
Then he felt a burst and had to be rushed to hospital he waited for over 3/4 hours in considerable pain to be told he had ruptured his spleen and needed emergency surgery to remove it. He had the operation they used some of the litres of blood that had leaked into his stomach and put it back into his body which is making me more worried. He was in intensive care for a week then was eventually allowed to come home where he has been since recovering.
He got called back to the hospital 2 days ago and was told the devastating news that he has got angiosarcoma cancer and that the doctors will be in touch as this is a very rare form of cancer and they need to meet to discuss the case we are still waiting 3 days on with no answers and not knowing what is going to happen to him he is 56 years of age has a wife and 4 kids me being one of them and I don’t know what else to do but try and find people i can speak to about this while the nhs and doctors discuss what to do???
Please could anyone give me some advice on treatments if you’ve heard of anybody else who’s spleen has ruptured with this cancer? what has happened? how long he’s got? if there is any drugs or anything we could try to help him anything we have had no answers no one knows anything about this its so upsetting and our family is devastated by this news

please please help me with anything you can tell me about this

Thank you

Natalie

natalie1611

has anyone survived similar
has anyone survived similar if the spleen has ruptured?? pls let me know anything

mijolero

I'm so sorry to hear about
I'm so sorry to hear about your dad. I just wanted to let you know that there is a wonderful angiosarcoma group on Facebook
https://www.facebook.com/groups/101899709845272/?ref=ts that can answer many of your questions and offer support.

yolanda revilla

angiosarcoma
I hope in angiosarcoma in mejopr facebook group is called "Angiosarcoma Cancer"

bean44

yolanda revilla said:

angiosarcoma
I hope in angiosarcoma in mejopr facebook group is called "Angiosarcoma Cancer"

"Looks like a bruise"
I had breast cancer in 2003, treated with lumpectomy and radiation. In 2008 noticed a fast growing red place on the breast that had been treated with radiation. Six months later was diagnosed with angiosarcoma. I was very lucky to have an excellent doctor who recognized it quickly and treated it aggressively. Unfortunately, he quit his practice and moved into research.

After having surgery and chemo over the course of two years, the new oncologist stopped the chemo because he said I had received a life time dose, couldn't have any more of that kind of chemo. The sarcoma came back within three weeks. Had more surgery and then was referred to a radiation specialist who combined radiation with heat. Had terrible burns across my chest but the doctors felt like they had gotten it. What that opinion was based on I don't know as I had no exit tests of any kind.

Within a few weeks after ending the radiation/heat another discoloration appeared. My surgeon doesn't want to biopsy it because some of the radiation burns have not healed and he doesn't want to make another wound that won't heal.

The new oncologist said he thought the discoloration was a bruise (a bruise that lasted four months?!) so I changed oncologists. The new guy seems a little sharper but he also made the comment that it looks like a bruise. He ordered a new PT and I have an appointment to talk to him next week.

Here's what I am thinking: not all bruises are angiosarcomo but all angiosarcomas are bruises. What is a bruise? Damaged blood vessels. What is angiosarcoma? Damaged blood vessels.

I don't know what will happen next but it has been helpful to put it out here in chronological order. I'll see what the PT shows. I think the PT will show if the cancer has spread but I'm not sure it can pick up an agiosarcoma mass. I had a PT on an area that later biopsied as AS so am not sure if PT can "see" this kind of cancer.

I think I am going to insist on another biopsy unless they can give me a better reason not to.

I noticed no one has posted for a month or so. If others are out there I would really like to hear from you. This is such a scary cancer and one moment I am sure I'm dying and the next I think I'm just worrying over nothing. Thanks

survivor9yrs

bean44 said:

"Looks like a bruise"
I had breast cancer in 2003, treated with lumpectomy and radiation. In 2008 noticed a fast growing red place on the breast that had been treated with radiation. Six months later was diagnosed with angiosarcoma. I was very lucky to have an excellent doctor who recognized it quickly and treated it aggressively. Unfortunately, he quit his practice and moved into research.

After having surgery and chemo over the course of two years, the new oncologist stopped the chemo because he said I had received a life time dose, couldn't have any more of that kind of chemo. The sarcoma came back within three weeks. Had more surgery and then was referred to a radiation specialist who combined radiation with heat. Had terrible burns across my chest but the doctors felt like they had gotten it. What that opinion was based on I don't know as I had no exit tests of any kind.

Within a few weeks after ending the radiation/heat another discoloration appeared. My surgeon doesn't want to biopsy it because some of the radiation burns have not healed and he doesn't want to make another wound that won't heal.

The new oncologist said he thought the discoloration was a bruise (a bruise that lasted four months?!) so I changed oncologists. The new guy seems a little sharper but he also made the comment that it looks like a bruise. He ordered a new PT and I have an appointment to talk to him next week.

Here's what I am thinking: not all bruises are angiosarcomo but all angiosarcomas are bruises. What is a bruise? Damaged blood vessels. What is angiosarcoma? Damaged blood vessels.

I don't know what will happen next but it has been helpful to put it out here in chronological order. I'll see what the PT shows. I think the PT will show if the cancer has spread but I'm not sure it can pick up an agiosarcoma mass. I had a PT on an area that later biopsied as AS so am not sure if PT can "see" this kind of cancer.

I think I am going to insist on another biopsy unless they can give me a better reason not to.

I noticed no one has posted for a month or so. If others are out there I would really like to hear from you. This is such a scary cancer and one moment I am sure I'm dying and the next I think I'm just worrying over nothing. Thanks

breast angiosarcoma..bean44
i was just cking the post when i read yours.. i had BC in 2000, lumpectomy and radiation. 8 1/2 yrs later i had AS.. had mastectomy and chemo.. so far so good. i am still cancer free.. i don't understand how they could have given you more radiation.. and why 2 yrs of chemo... did your AS metastasize? mine did not.. i would most certainly request a biopsy. if there is a bruise, find out why... i was told mine was a hematoma... wrong...
keep posting and i will keep checking
survivor9yrs

Plavixman

survivor9yrs said:

breast angiosarcoma..bean44
i was just cking the post when i read yours.. i had BC in 2000, lumpectomy and radiation. 8 1/2 yrs later i had AS.. had mastectomy and chemo.. so far so good. i am still cancer free.. i don't understand how they could have given you more radiation.. and why 2 yrs of chemo... did your AS metastasize? mine did not.. i would most certainly request a biopsy. if there is a bruise, find out why... i was told mine was a hematoma... wrong...
keep posting and i will keep checking
survivor9yrs

angiosarcoma
My wife is recently diagnosed with Breast Angiosarcoma. She found it while having what she thought was a ruptured implant. It really got nasty and the Doctors thought he was going to lose her during surgery, he was a plastic surgeon. Just happened this was going on in a major hospital and he had back up or she would have bled to death. They removed the implant and sewed her back up. She was in the hospital to have Colon Cancer surgery. Can you imagine that. Colon Cancer and Angiosarcoma of the breast at the same time. unbelievable. She spent 5 days in one hospital when they found the colon cancer, 29 days in another hospital for the colon/breast cancer. And now has spent another 2 weeks for the angiosarcoma and radiation. They just did a biopsy on her right lung Friday thinking it may have spread to her lung,and they punchered it. Spendt last weekend in ICU with a tube in her side reinflating her lung. Give me a break. I don't know how she is continuning. By the way, the lung was Negative. That was some good news we really needed. After just a week of Radiation her bleeding has slowed down dramatically. Hope we get some more good news from the Doctor By Friday, like maybe she can go home for a while.

survivor9yrs

Plavixman said:

angiosarcoma
My wife is recently diagnosed with Breast Angiosarcoma. She found it while having what she thought was a ruptured implant. It really got nasty and the Doctors thought he was going to lose her during surgery, he was a plastic surgeon. Just happened this was going on in a major hospital and he had back up or she would have bled to death. They removed the implant and sewed her back up. She was in the hospital to have Colon Cancer surgery. Can you imagine that. Colon Cancer and Angiosarcoma of the breast at the same time. unbelievable. She spent 5 days in one hospital when they found the colon cancer, 29 days in another hospital for the colon/breast cancer. And now has spent another 2 weeks for the angiosarcoma and radiation. They just did a biopsy on her right lung Friday thinking it may have spread to her lung,and they punchered it. Spendt last weekend in ICU with a tube in her side reinflating her lung. Give me a break. I don't know how she is continuning. By the way, the lung was Negative. That was some good news we really needed. After just a week of Radiation her bleeding has slowed down dramatically. Hope we get some more good news from the Doctor By Friday, like maybe she can go home for a while.

plavixman
your wife certainly has had her share of illness. i do hope she is doing well. angiosarcoma is a nasty cancer.. i'm assuming she had primary AS. as for me, mine was secondary ..caused by radation for BC 8 1/2 yrs earlier.. so far so good. i am almost 3 yrs free and have a friend who is 6yrs free... so we can survive... you all have had a lot to digest in a short time.. hope all progresses nicely and she is cancer free, forever
survivor9yrs

Molly72

bean44 said:

"Looks like a bruise"
I had breast cancer in 2003, treated with lumpectomy and radiation. In 2008 noticed a fast growing red place on the breast that had been treated with radiation. Six months later was diagnosed with angiosarcoma. I was very lucky to have an excellent doctor who recognized it quickly and treated it aggressively. Unfortunately, he quit his practice and moved into research.

After having surgery and chemo over the course of two years, the new oncologist stopped the chemo because he said I had received a life time dose, couldn't have any more of that kind of chemo. The sarcoma came back within three weeks. Had more surgery and then was referred to a radiation specialist who combined radiation with heat. Had terrible burns across my chest but the doctors felt like they had gotten it. What that opinion was based on I don't know as I had no exit tests of any kind.

Within a few weeks after ending the radiation/heat another discoloration appeared. My surgeon doesn't want to biopsy it because some of the radiation burns have not healed and he doesn't want to make another wound that won't heal.

The new oncologist said he thought the discoloration was a bruise (a bruise that lasted four months?!) so I changed oncologists. The new guy seems a little sharper but he also made the comment that it looks like a bruise. He ordered a new PT and I have an appointment to talk to him next week.

Here's what I am thinking: not all bruises are angiosarcomo but all angiosarcomas are bruises. What is a bruise? Damaged blood vessels. What is angiosarcoma? Damaged blood vessels.

I don't know what will happen next but it has been helpful to put it out here in chronological order. I'll see what the PT shows. I think the PT will show if the cancer has spread but I'm not sure it can pick up an agiosarcoma mass. I had a PT on an area that later biopsied as AS so am not sure if PT can "see" this kind of cancer.

I think I am going to insist on another biopsy unless they can give me a better reason not to.

I noticed no one has posted for a month or so. If others are out there I would really like to hear from you. This is such a scary cancer and one moment I am sure I'm dying and the next I think I'm just worrying over nothing. Thanks

Looks like a bruise
Hi bean44,
I just now saw your post, let me know how you are doing.

Last summer I had an Angiosarcoma removed from my upper chest. It was a small tumor that so far has not metastasized.
It started as a bruise, a small (1 and 1/2 inches long) but very vivid dark purple in color. It did not hurt, and I had not injured the area where it appeared. Then it went away, and re-appeared 2 months later in the same place. Then I went to a dr. & had it biopsied. I went thru so many tests & procedures that I lost count of them all. The surgery was successful. In December, I was operated on for a GIST, which is another rare cancer. The drs. said the two cancers were not related, I have my doubts! I am now going through surgeries for skin cancers, it never ends.
Through all the reading I have done on Angiosarcomas, there seems to be a correlation between either radiation therapy or removal of lymph glands causing lymphadema (sp?) and angiosarcoma. I had my lymph gland removed years ago on my upper chest due to a melanoma.
I suggest you Google & read up on Angiosarcoma. You will find some interesting facts on the Internet, much more than you can learn from your doctors!

JoyEve

angiosarcoma
Hey, sorry to heard about your dad. My son in law was just diagnosed in June. I don't know where you live, but there is suppose to be a clinical trial in August at Barnes Hospital in St Louis,Mo.

oriontj

JoyEve said:

angiosarcoma
Hey, sorry to heard about your dad. My son in law was just diagnosed in June. I don't know where you live, but there is suppose to be a clinical trial in August at Barnes Hospital in St Louis,Mo.

My good friends husband
has been diagnosed with angiosarcoma. It was found when he had gall bladder surgery. He was in pain for almost a month. The slides were sent to John Hopkins, no one recognized it here. When they found out what it was, they went to the U. of Chicago. His last scan showed the entire liver is comprised, they can't do chemo because of this. He was given a few weeks only tolive. My friend is totally devasted and doesn't know which side is up.

1scareddaughter

survivor9yrs said:

plavixman
your wife certainly has had her share of illness. i do hope she is doing well. angiosarcoma is a nasty cancer.. i'm assuming she had primary AS. as for me, mine was secondary ..caused by radation for BC 8 1/2 yrs earlier.. so far so good. i am almost 3 yrs free and have a friend who is 6yrs free... so we can survive... you all have had a lot to digest in a short time.. hope all progresses nicely and she is cancer free, forever
survivor9yrs

survivor9yrs
I have read most of your post regarding angiosarcoma. I hope you are still doing so well and I love your positive spirit! Keep spreading the hope. My mom had breast CA 14 years ago. She had a lumpectomy followed by chemo and radiation. In May this year, she was diagnosed with angiosarcoma of the breast (from her radiation 14 years ago). It had not spread at that time and she underwent a masectomy in June. In july she started chemo to prevent reoccurance. She just had a PET scan and it shows suspicion that it has spread to lymph nodes under her breast bone and a lymph node in opposite armpit. HOW DEVASTATING. We are in Ohio and don't know where to go for help. I agree that it isn't as "rare" as they are saying it is. I see there is a support group on facebook, but I"m not on facebook. Any other sites you recommend for info? Does anyone know where to go for treatment? Will do or go anywhere for my mother, just wish there was someone who specialized in this horrible disease. Any info/help would be greatly appreciated.

1scareddaughter

survivor9yrs

1scareddaughter said:

survivor9yrs
I have read most of your post regarding angiosarcoma. I hope you are still doing so well and I love your positive spirit! Keep spreading the hope. My mom had breast CA 14 years ago. She had a lumpectomy followed by chemo and radiation. In May this year, she was diagnosed with angiosarcoma of the breast (from her radiation 14 years ago). It had not spread at that time and she underwent a masectomy in June. In july she started chemo to prevent reoccurance. She just had a PET scan and it shows suspicion that it has spread to lymph nodes under her breast bone and a lymph node in opposite armpit. HOW DEVASTATING. We are in Ohio and don't know where to go for help. I agree that it isn't as "rare" as they are saying it is. I see there is a support group on facebook, but I"m not on facebook. Any other sites you recommend for info? Does anyone know where to go for treatment? Will do or go anywhere for my mother, just wish there was someone who specialized in this horrible disease. Any info/help would be greatly appreciated.

1scareddaughter

1scareddaughter
i just found your post and hope you are still checking back on them. i have made it to the 3 yr mark.. so far so good. have a scan in a wk.. i hope your mother is doing well and there was no recurrence of this cancer..have you tried the cancer centers of america. one in chicago.. big cancer centers in nyc , boston, md anderson in texas, rosweell park cancer center in buffalo,ny.. if mine should return, im heading for one of them..
give your mother my best and good luck.
survivor9yrs