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Angiosarcoma of the Breast post Radiation

BELIEVEx3
Posts: 24
Joined: May 2009

Please let us know if you are out there surviving a diagnosis of Angiosarcoma of the breast..

survivor9yrs
Posts: 53
Joined: Oct 2009

believe x3
i am trying to put the word out there abt. this cancer. i really believe there are more of us than anyone thinks. after all, there are 2 of us in a rural tri-county area... these forums are a good way to alert people to new or rare cancers. stay well
survivor 9yrs

Marypal
Posts: 6
Joined: May 2010

OMG....I am so happy to find this website. I have felt that I was the only person on earth that has this cancer. I had never heard of it, and my oncologist told me he had treated only one case last year.
In 2003, I was diagnosed with breast cancer. I had a lumpectomy, 13 lymph nodes removed, had chemo and radiation therapy. I was on Femara for 5 years. In 2009, I was diagnosed with angiosarcoma. I had five doctors before it was diagnosed. My wonderful breast surgeon finally diagnosed it after three biopsys. I am told it is the result of the radiation that I had in 2003. My oncologist was so unfamiliar with this cancer, that he suggested that I go to a hospital that had a group that specialized in Sarcoma. So I went to Dana Farbe
r Cancer Center in Boston. The doctor there told me that there is no treatment, but if I wanted to be aggressive, I could have a regiment of Taxol, so I had 18 treatments of Taxol. Three weeks on and one week off. He also told me that no matter what I choose to do, there was a 70% chance it would return. He was right. In March, it came back. A PET scan and biopsy confirmed it was in my skin, chest wall, and lung lining. After consulting with DF, they came up with Doxil. The first treatment was pretty good About a week and a half after the first infusion, I noticed the sarcoma where my left breast was, started to fade. Wish me luck.

survivor9yrs
Posts: 53
Joined: Oct 2009

wow, yet another case... they say this is very rare... but.... i had BC in 2000. stage 1 no mets... no other trouble until i noticed a bruise mar. 2009... at first i was misdiagnosed.. in sept i went back and a biopsy was done. in oct i had mastectomy. i also had a pet and ct scan.. all clear.... in nov. i started gemzar and taxotere, 6 cycles.. had a hard time with it.. i am doing good. they did find 2-3 nodes in lung in feb. that they aren't sure what they are. i had alot of fluid.... another ct in april showed them still enlarged but unchanged. the incision and chest wall was clear...so now i find another victim of radiation... there is another one of us around my area. she is a 4 yr. survivor. i had one tumor. all removed with surgery and better than 2 cm. margins all around. how involved was your breast with this cancer. one tumor or many?? so many drs. don't know what this cancer is. my surgeon has seen 3 patients... i am the first my oncologist has treated. he is not a sarcoma spec. but contacts one if he has questions.. i am so sorry to hear this cancer returned on you. that is my greatest fear.. besides those nodes.. hope you will respond to this and i do wish you well
survivor9yrs

Marypal
Posts: 6
Joined: May 2010

Hi, Survivor,

This cancer is so rare that I went through five doctors before I was diagnosed. One of the doctors was the Radiation Oncologist that treated me in 2003. He said,"Mary, I've been doing this for 17 years, and I've never seen anything like this." He had no idea what the bruising marks and black growths were on my breast. In fact, when I went to Dana Farber for a second opinion, the Sarcoma Specialist doctor there told me that, of 200k women to get radiation therapy, only about 50 women get this cancer. That's probably why most doctors don't know anything about it. Think about it......that's not many spread over the nooks and crannies of our country.

I was grateful to my oncologist that he readily admitted that because he had little experience with this cancer, that I should go somewhere that specialized in it.

I try hard to be optimistic about the future, but my mind keeps going back to the doctor
at Dana Farber who told me it my "fate". I'm fighting like crazy, and I would give anything to get 4 more years like your friend got. In my book that would be great. My oncologist is hoping that Doxil will slow down the progress of this terrible cancer.

If I can be of any help or answer any questions based on my experience, please let me know. If anyone has been treated with Doxil for this cancer, I would certainly appreciate hearing from them.

Good Luck and prayers to all my Angiosarcoma sisters. God help us.

survivor9yrs
Posts: 53
Joined: Oct 2009

i have found site after site abt. AS. they all say the same. progonosis poor..BUT... there are alot of women out there who have survived. also some say this cancer is not as rare as they first thought. my surgeon has seen 3 women with this. that's alot for our rural area. my fried goes tothe roswell park cancer center in buffalo ny. her dr. has treated a few. she was given the same drugs i was. infact my onc. called hers and discussed it. i'll always be aware of everything. how invloved was your breast?? one tumor or more. i had one.. i am not familiar with doxil. i looked it up and will mention it to my onc. there are alot of discussion boards out there and they all have something on AS.... there are alot of us.... i pray you will do great. another lady i have had chats with is a yr. free. she is in or around nyc. i'm not sure what drug she had. it was different than mine. right now they are concerned abt. the lymph nodes that are enlarged. as i said i was so full of fluid from head to toe this winter. it could be from infection. he is watching them. if he orders a pet scan and they are more active, then i suppose he'll do more chemo. hope not.. but who knows. please keep me informed
survivor9yrs

Marypal
Posts: 6
Joined: May 2010

Thanks for replying to my note. Really appreciate it. This is the first useful website that I have found. Maybe my search was not thorough enough, but I'm glad I'm found it.

Do you know if the Cancer Center in Buffalo has a Sarcoma group. I live about a hundred miles north of NYC, and I know that there is one in Boston and NYC. My oncologist and I decided to wait and see the result of the Doxil before we conferred with Sloan-Kettering in NY. So that will be my next step. I've only had two Doxil treatments, and my oncologist told me before my first one, that if we didn't see any progress after the second treatment, we could stop the treatment. But the trauma where my left breast was, has faded away. It is no longer visible. Since angiosarcoma is a cancer of the lining of the blood vessels of the skin, I find some hope in the fact that this has disappeared from my chest. As it was explained to me when my breast was removed last June as a result of my Breast Surgeon's persistence, the cancer is in the skin, so when they have to use the same skin to put you back together after the mastectomy, there is a very strong possibility that this will return. As it did.

There are days that I am very hopeful, and other days that I feel I was handed a death sentence. I go back and forth. Right now I'm dealing with hand-foot syndrome from the
Doxil treatment, and upset that I wasn't wise enough to prevent this. I haven't been fully functional for about two weeks. I am a very independent, active person, and I hate being inhibited. The control freak in me hates that I can't get rid of this syndrome.

Happy Mothers Day and God Bless Us.

survivor9yrs
Posts: 53
Joined: Oct 2009

the roswell park cancer institute has a sarcoma team headed by dr. michael wong. this is the dr. my oncologist conferrs with and who is my friend dr. he has a side specialty of AS. has had a few cases... you can go to the website for roswell park and meet the team... i have found that everyone seems to be getting different drugs. the recurrence is high along the incision and chest wall. keep a close eye.. if my nodes need chemo. my dr. talked abt. adramycin and ifosomide.. hope it doesn't come to that. this cancer is in the lining of the blood vessels. it travels through the blood vessels. it's a nasty cancer. but from what i have read from other message boards, it is survivable.. one site mentioned her relative is a 20 yr survivor. so lets hope... hope is all we have.. must be the doxil is working if the tumors are fading. when will they do another scan. did they get large margins when they did your mastectomy? i do wish you well. i wish all of us AS victims well. we need it. we need the research to find a drug that really attacks this cancer. to think we thought our BC was taken care of, only to be given another by the radiation. unreal. i still can't believe it happened...
survivor9

Marypal
Posts: 6
Joined: May 2010

Thanks for the reply, Survivor.

My Breast Surgeon got it all to .25c of the chest wall. She did her best. But she had to use some of the skin to close.

I am experiencing some bad side effects from the 2nd Doxil. Had almost none with the first. Having Hand and foot syndrome quite bad. Haven't really been able to function with my right hand for about 2 1/2 weeks. I made the error of not doing my homework on how to prevent this side effect. Didn't really research it until I already had it. BIG MISTAKE

Also, I have a very bad rash under my right arm. Driving me crazy. I have tried many things but so far nothing is too effective in reducing the terrible rash/itch. I tried some of the things suggested in this, and other websites, but so far nothing worked.

Are you sure it was a "20" year survivor, and not 2 year? That is just wonderful!!

You're right, Survivor, who ever would have thought we would be victims of this terrible
cancer, by doing everything right with the first cancer. I find it unbelieveable!!

Marypal

B

survivor9yrs
Posts: 53
Joined: Oct 2009

sorry to hear of all the side effects you are having. i hope i don't have to have that drug. the 2 i had gave me all the side effects they carried. worst was the fluid retention and shortness of breath... i'm still having trouble with my lower legs. they are tight and sore. have dr. appts this wk with surgeon and onc. will have to see what this is all abt. then i supppose onc. will order a pet to ck on those lymph nodes. the person said her relative was a 20 yr survivor. it took them 3yrs to figure out waht she really had. i'll look where i saw it and let you know. my surgeon closed me with each side of my chest skin. i didn't have a flap. she had real clear margins and lots to use. i had one tumor.... no matter how long it is, i still can't believe i'm going through this again. i'm so stressed out and worried all the time. keep telling myself everything will be ok, but.... it's been almost 7 mos. since my surgery..
have yourself a wonderful mothers day. keep fighting
survivor9yrs

the post is under breast cancer... type in breast angiosarcoma.... MAJW posted it...

Helensherwood
Posts: 1
Joined: Jul 2011

You mention you should have been wise enough to prevent hand foot syndrome & I was wondering just how you prevent it. My sister Kelley has radiation induced angiosarcoma a spot on her breast they are doing 3 rounds of chemo taxatere & gemzar spaced at 2 week intervals then will fo a mastectomy then 3 more rounds of chemo. She is 2 weeks out from her 2nd chemo & she developed hand foot syndrome she could not walk for a few days but now it is subsiding a little more each day. I would love to know if there is a way to prevent getting it from the next round she I'd really scared it will come back. Thanks for your post I'll look forward to hearing your answer.
Helen

yolanda revilla
Posts: 4
Joined: May 2010

I would like to know more about your treatment. my cousin is 22 years angiosarcoma. we are tristes.cual doctor attended you? I need you. help me

survivor9yrs
Posts: 53
Joined: Oct 2009

hi,
your cousin is 22 yrs. old? has AS. where is she being treated. i had mastectomy and 6 cycles of gemcitibine and taxotere. each cycle was... 1 wk gemcitibine, 2nd wk gem & taxotere. 3rd wk off. my dr. is in nys...

laurenstacy
Posts: 4
Joined: Apr 2010

hello..
i saw your reply on another thread but can't find it.. i found you here tho... i am pretty sure you spoke to precious and asked how to get onto fb or another person did...

to find us on facebook... click search and type in AngioSarcoma Cancer
it should come up...

also, i am workign on a web page for AS cancer.... www.angiosarcomacancer.com

hope your doing well and in good health...

Lauren

yolanda revilla
Posts: 4
Joined: May 2010

hola: like this all ?????

laurenstacy
Posts: 4
Joined: Apr 2010

hello..
i am an almost one yr survivor of primary angiosarcoma. i know its hard to find people in the AS family. on facebook i have a group called AngioSarcoma Cancer as well as a website that is very new at... www.angiosarcomacancer.com

Please come and join us to help build us up and help each other.

Lauren

Wishing you all the best of health always.

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