Angiosarcoma

My father was diagnosed with Angiosarcoma on his scalp in October 2008 originally thought it was skin cancer, was not diagnosed for about 2 years.  He had the original tumor removed on 2/26/09 and within 2 months 4 more lesions appeared on his head.  On April 29, 2009 he had a 12 hour surgery which the doctor took pretty much the entire top of his scalp and covered the area with what they call a flap (muscle from his back) then connected the veins to the side of his face to keep the flap alive) and covered the flap with a skin graph from his thigh.  He's home now from the hospital and is recovering from this very radical surgery.  We were originally told that chemo and radiation was not effective for angiosarcoma, but now the doctors have decided to start radiation to the head ASAP.  Not being able to find much information on this type of cancer, my family is relying on what the doctors are telling us.  My father otherwise is very healthy.  We are not sure how or why he got this cancer - again there's not much information out there.  The doctors explained that since there are so few patients with this cancer there is not a lot of research on how to treat this cancer.  Of course everything I read is horrible and not very encouraging.  Any words of wisdom from anyone who has had this cancer or knows someone who has would be welcome.  We are praying that the doctors got it all and that it has not and will not metastsize ... but they can't guarantee that.  They are telling my dad that he will be really tired after radiation but should not feel ill.  Is that true?  He is to go for 7 weeks every day but the weekend for treatment. We have also been told that if any tumors reappear on his head there really is nothing more they can do to remove them.  My dad has been a trooper - he does not complain other than he can't stand sleeping on his back!  Needless to say my dad and mom's live has been turned upside down since this was discovered.  My brother, sister and I have been trying our best to be there for them and to keep a positive attitude - we all work and it's difficult to take long periods of time off - especially with today's economy and with the threat of loosing jobs.  My mom has been my dad's nurse while he has been recouperating from the surgeries - she's been wonderful - but I know she's hurting so bad inside.  Can anyone recommend support groups in the Lynchburg, VA area that I may suggest to my parents.  They are not really computer savy so the internet is not really a great option for them.  We have actually not advised my dad to search on the internet because you can't believe everything you read on the internet and I did not want him to give up hope. If anyone has any information to share about this horrible disease, please feel free to let me know.  The more I can learn about it the better, I have always heard cancer patients need to be their own patient advocate - and that so many hospitals and centers can treat you like you are just a number and I want to make sure my dad is getting any and all possible treatment available to fight this cancer.   

 

 

I am so sorry to hear about your father and I can relate: my 75 yr old Dad was diagnosed with same thing Aug. 2007; also after misdiagnosis of skin cancer (which he did also have!) It is rare, for sure. Not much for data, or info. His lesion was large and growly quickly. It started to ulcerate & bleed, It was a mess.

He never had surgery due to other issues (diabetes & blood clots). He was always told no matter what, it always comes back. He had several types of chemo over a 10 mos period. Our oncologist (my Mom and I also were dealing with cancers at the same time-but that's another story) was in e-mail touch with the Head of Sarcomas at Dana-Farber, who was suggesting different, newer chemo ideas. It got better, then worse again. He also then had radiation for 7 wks starting Aug. 2008. He tolerated it very very well-and it bought time, but right afterward, it started growing again.

He died Dec. 2008; after getting to his last option which would have been with Avastin-but due to his bloot clot situation would have been dicey. He was failing & weakened-blood counts so low, etc. and we all decided to get hospice and keep him home & comfortable. My mother had died of her cancer at home, with hospice, just 2 mos before him.

I think if he'd have had surgery in the beginning-IF his health would have allowed it-it may have helped alot. To get clean margins, they also would have had to remove the whole top of his scalp-sounded very ominous. Some of the Dr's he saw believed he should have no matter what! I sure hope that's the case with your Dad. We had him to the (MN) Mayo also-even they hadn't seen that many cases of this-especially so far advanced as my Dad's was. 

I hope things go well,-how old is your Dad? It definitely hits older men, as a rule. It was never painful, thank goodness-more aggrevating with the bleeding and it looked like hell! We became experts in cleaning and dressing.

I don't mean to be negative here-just honest. I sure wished I could have communicated with someone in this same situation at the time-I was on this board briefly, looking for info & help, too. Feel free to reply to me-if I can help in any way. I am a Head & Neck, squamous cell carcinoma survivor-2 yrs & counting!!!!!!   Best of everything to your Dad and family! Gayle

 

Hi- I was so sorry to read about your Dad. My daughter has primary angiosarcoma of the breast. It has been diagnosed for about a year now, but went undiagnosed for about 6 or 7 mos. which is not unusual.  I can completely understand your frustration with the lack of concrete information and advice on what is the best course of action. It is also frustrating for me that many people don't understand that this is not a "normal" (if there is a normal) cancer that the oncologist says ok- here's what you do!  My daughter did have a mastectomy as surgical ( if possible) removal of angiosarcoma has been the gold standard for manytimey years . She has not had any chemo or radiation to this date. She now has some poss. mets to the lung and breastbone and is deciding whether or not to have chemo.  Most of the literature points to chemo possibly halting tumor growth for a few months until they can figure something else out-  What you heard of radiation is true, it can't be done twice to the same area. My daughter is continuing to work parttime and is going all out in non-traditional therapies and research. She is having quite a bit of pain from the breastbone and as I said is considering chemo but wants to make sure her immune system is in the best possible shape - esp if she decides on chemo. The bottom line here seems to be day to day quality of life. Treatment decisions are very personal decisions.  There are numerous sarcoma blogs and my daughter has met and corresponded with a number of people who have this rare cancer and it has really helped her-does your Dad use the computer? Most towns also have some sort of cancer support groups. God bless you in your quest!