Topic: Angiosarcoma

I'm a 5 1/2 year survivor of breast angiosarcoma. My breast cancer symptoms and history are almost identical to those of your cousin. I had a bi-lateral mastectomy with a tram flap followed with 18 infusions of chemo spread over 6 months. My poor chemo brain doesn't recall what chemo drugs were used but I remember it was a combination of 3 drugs. By the way - I'm also BRCA2 positive. Your cousin may want to be tested for the gene. Please email me with any questions or concerns.

LateForTheSky, how wonderful to hear your strong story! Thanks for sharing that, and welcome to the boards here. May I ask you if you feel that WHERE you were treated made a difference, as this is rare enough that perhaps it matters how familiar doctors are with it.

Mdisonquin, I'm really sorry for your cousin's new diagnosis. How discouraging! Hope you and she both are finding good answers and help. I wondered if your cousin's lymphedema was truncal (in the area of the bruising) and if you would mind sharing with us whether the lymphedema was treated or not, and how many years ago it was? Lymphangiosarcoma is a rare outcome of lymphedema, but I've only heard of it resulting after many years of inadequate lymphedema treatment. I hope you'll keep us posted on her progress. So glad she has you to help her!

Hugs, prayers,
Binney 

Goodness! What a journey you have been on!  Welcome to the boards!  I'm so sorry you have had to go through this trial.  I have several unusual diseases, so though I don't have angiosarcoma, I have some feel what its like to have something unusual.  

This is the best I can do for a short Pubmed search.  You probably aren't very familiar with my posts, but I'm usually pretty straightforward and upfront with little sugar-coating.  

I'm glad your doc is straightforward and knows that each patient is different.  (Well, we all are different, but that is how I'd want my doc to be.)  

http://www.ncbi.nlm.nih.gov/pubmed/18813119

http://www.ncbi.nlm.nih.gov/pubmed/18813119

http://www.ncbi.nlm.nih.gov/pubmed/16288486

http://www.ncbi.nlm.nih.gov/pubmed/15334638

In this abstract, "The 10-year OS and DFS rates were 53% and 55% for angiosarcoma patients and 89% and 100% for cystosarcoma patients (p=0.009 and 0.01 respectively)." http://www.ncbi.nlm.nih.gov/pubmed/15550877  so (if I understand statistics right) in this study, over half of the people with primary angiosarcoma survived 10 years.

I'm glad you're going to a specialist!  Hoping all goes well for you!  Let us know how it goes, OK?

hola soy de mexico mi sobrina tiene angiosarcoma primario de mama quisiera saber como fue tu cancer, y que medicamnetos usaste para estar vivo????

Hi Leaf,,,

you wrote in ur reply to me that over half survived angio 10 yrs... i am not holding you to it i know its what you understand the statistics to read....  but does it mean they lived past 10 yrs or died....  i tried reading what you sent and its all a scrabble to me...  and impossible to do with 3 girls 5 and under at home.  thanks

Lauren

I asked my long time online friend living in Puerto Rico and she was so sweet and translated Lauren's story into Spanish for Guena. I know she wouldn't read this as she has never had cancer of any sort and I didn't even tell her about this site but I must say this anyway. Thank you Mary for your willingness and kindness to help someone you don't even know. I am so proud that I have a friend like you! You rock!!! Here's what Lauren said in her first post in this thread.

-------------------------------------------------

El marzo pasado fui diagnosticada con angiosarcoma primaria. Paso en mi seno derecho. Mi esposo noto moretones debajo del seno y me pregunto que era eso. Yo no sabia de que el estaba hablando. Luego me mire en el espejo y  me mire el seno. No pude creer lo que estaba viendo. Nunca habia visto un moreton asi en mi seno! Llame a mi doctora imediatamente y ella me llevo con ella. Ella dijo que no me debia de preocupar mucho por que parecia como un tumor en el seno. Le asegure que que no me habia dado y que hubiera recordado si me hubiera dado en el seno. Ella quedo en acuerdo conmigo y me envio a hacer una mamografia y avisar mi seguro para hacerme un MRI.
                 
Imaginate esto, mi seguro me nego hacer el MRI por que dijeron que no tenian suficiente pruebas. Mi madre biologica lo tiene en sus dos senos, dos pequenos tumores que encontraron a tiempo. Y una tia mia murio de cancer de seno. Molesta a tu seguro y asegurate hacerte un MRI! De alguna manera, pelea por ese derecho y no te rindas aunque en el futuro no sea nada.
                   
Y esto es por que:
                     
Mi doctora estaba preocupada por que yo no recordaba haberme lastimado.  Ella nunca habia visto nada asi. Ella me dijo que no me preocupara pero me envio a chequearme por si acaso. Con la negacion de mi MRI fui a hacerme la mamografia. En lo que esperabamos por eso la doctora me envio a un cirujano y el dijo que parecia un moreton. Esto a el lo preocupo tambien y penso que era un trauma. El siguio para que aprobaran mi MRI. Yo le pregunte que pasaba si me lo negaban de nuevo y el dijo: "Eso es cuando yo los llamo y lo obtengo". Yo estaba segura que ahora me lo iban a aprobar.
                     
Y asi fue que me lo aprobaron. Ahora necesito una biopsia  por que tengo dos masas y uno mas pequeno. Me hice la biopsia y aprendi que tenia un tipo de cancer del seno. Ellos fueron muy buenos al decirmelo a mi y ayudar a mi madre.
                      
Los resultados llegaron y mi esposo y yo fuimos al cirujano. El nos sento y nos empezo a hablar. Senti que estaba en una pelicula de drama del  canal de lifetime. Fue el momento mas surreal de mi vida que habia tenido aparte de lo que paso en el 9/11. El me dijo que tenia 27 anos de practica y que nunca habia visto algo asi. El dijo que la remocion del seno era la mejor solucion aparte de algunos tratamientos posibles. El tambien me dijo que buscara una segunda opinion. Y eso fue lo que hice el dia siguiente en el memorial sloan kettering en Manhattan.
                     
Primero vi a una doctora de cancer de seno pero no me acepto por que me dijo que ella no trataba esos casos. Luego ella me recomendo al doctor Murray Brennan a quien vi en mi proxima visita. En todo este tiempo yo no estoy buscando nada en el Internet y le dije a todo el mundo que no me dijeran nada respecto al caso. Yo sabia que no lo iba a poder manejar bien las noticias. Ahora mismo estoy buscando cosas con una actitud increiblemente positiva. Yo sabia que el Dr. Brennan me iba a poder ayudar desde que lo conoci.
                   
Y asi fue. Tuve una masectomia en mayo 19. Hoy es junio 29 y estoy casi 90% curada. Mis magenes estan tambien curados y no necesito tratamiento. Todo lo que tengo que hacer ahora es esperar.
                    
El Dr. Brennan esta optimista de que el cancer no va a aparecer de nuevo pero el no puede prometer eso. Me siento bien por esto. Aunque yo he leido de que solo una persona ha estado por 5 anos antes de que aparezca de nuevo. No he encontrado a otros.

-------------------------------------------------

Hope this helps.

Hugs,

Fumi

lauren gracias poe contestarme no se ingles y me cuesta trabajo contestar en el forum espero que esto te llegue si es asi me gustaria tener contacto contigo por mail, mi sobrina la diagnosticaron mal pensaban que era un  fibroadenoma le dieron hormonas y en cuestion de 2 meses el tumor ya media 12 cm, le dieron radioterapia y en cuestion de dias empieza quimioterapia, me llamo la atencion que tambien fue en marzo el diagnostico y operacion podriamos platicar, espero me pases tu mail para platicar, hablas español ? gracias por escucharme , estamos muy tristes

Okay, Lauren, I'll give this a try. If anybody speaks Spanish please clean up my attempt at a translation!

First message:

"Lauren, Thanks for answering me. I don't know English and it's a lot of work to ask questions in this forum. I hope, if you don't mind, that you might contact me by mail. My niece was badly diagnosed with fibroadenoma, they gave her hormones, and in two months time the tumor measured 12 cm. They gave her radiation, and in a few days she will begin chemo. Also the diagnosis and operation were in March. May we talk? I hope you will geve me your mail in order to chat. Do you speak Spanish? Thank you for listening to me; we are very sad."

Second message:

"Hello,
I'm from Mexico. I wish for more information about angiosarcoma for my 22-year-old niece. They found primary angiosarcoma of the breast. They did a mastecomy, six sessions of rads, and in a few days she'll begin chemo. I wish to know what type of drug is most often used for angiosarcoma and what results they've gotten."

Leaf or Tender, any results you can summarize in as few words as possible here, so hopefully Fumi's friend can put them into Spanish? And Lauren, can you give us a run-down of the chemo drugs? Or even, ask your doc if her doc can consult with him by phone (in Spanish?)

Thanks, all.

Guera, estamos tan triste tambien. Voy a tratar de obtener la informacion y una traduccion pronto. Todos nosotros queremos ayudarte. Que Dios los bendiga,
Binney

Guera, lo siento que no hablo muy bien el Espanol - hablo muy poco.

"leaf" dice que aqui <http://www.ncbi.nlm.nih.gov/pubmed/19127256> se dice que dos pacientes con ansiosarcoma usan estos drogos:
Everolimus 15-30mg con Paclitaxel 80mg/m2 en los dias 1, 8, y 15 en un ciclo de cada 28 dias.

Y agui <http://www.ncbi.nlm.nih.gov/pubmed/19051469> se dice que se necesitan un operacion para sobrevivir. (Y tu sobrina ya ha tenido la misma, si? Muy bueno!)

Aqui <http://www.ncbi.nlm.nih.gov/pubmed/19051469> se dice que tres pacientes tenian buenos resultados con estos drogos:
adriamycin 40 mg/m2 en dia numero 1, ifosfamide 3 g/m2 en los dias numeros 1-2, cisplatin 35 mg/m2 los dias numeros 1-2, y paclitaxel 175 mg/m2 en el dia numero 3

Y aqui <http://www.ncbi.nlm.nih.gov/pubmed/18813119> se dice que el grado tumoral no importa para la supervivencia. (Espero que puedes leer estas palabras -- lo siento que no hablo mejor el Espanol.)

Abrazos,
Binney
Thanks, leaf. Anybody who can correct the Spanish for me, please do!

Thanks for helping me, really I am happy to help me, my sadness is not given proper treatment, she is very good, seems to have no cancer, and Recivier 6 weeks of radiotherapy, and on Monday told the chemotherapy, I hope to know that drug use, and thanks for the others that have given me, thank you to my mind, I also wish the best for you all, and that everything goes well, ask God for you Thanks. atte. La Guera

Leaf,

You are awesome and thank you soooo much for helping me understand this better.  Are you a survivor or caregiver????? 

 Everyone... thank you so much for translating my story to spanish and all the othger stuff for guera.. it is scary enough and to not speak the language and feel lost i can't imagine.... all you translators thank you!!!!!!!!!!!! 

Guera... i repsonded to your private message.... please chekc it out...

Please note.... I did not receive any chemo or radiation treatments.  I lucked out with that. 

Anyone here suffer after it was all over... I seem to be going through a very high and fast emotional rollercoaster now....

xoxo... all my love, Lauren

Hi there Lauren.  I only have LCIS, ALH, and nothing worse.  Most oncologists do not classify LCIS as a cancer, so I'm only at higher risk.  I've never had angiosarcoma.

I'm a hospital pharmacist, so am used to trying to do some medical digging.

We all want to be ready for whatever is ahead for us.  Best wishes.

Hello. I too have been diagnosed with an Angiosarcoma of the breast. I am just now beginning to learn what it all means. 8 years ago I had bi-lateral BC, was treated with chemo and radiantion. Now I guess I have the secondary AS. Please any informtion you can give me will me most apprecated. I am having a bi-lateral Mastectomy next week. But I still need all the information I can get on what all this means and what the prognosis is. Thank you, Carolyn

carolynlg,

sorry to hear you are going through this too.there is so little info. on this and most of it is so old. i really have no idea what the prognosis really is. all the old stuff is so negative. my oncologist told me not to read it, it isn't good anymore. in 3 wks i had a biopsy, pet and ct scan and a simple mastectomy. my scans were all clear. and my surgeon got all my tumor out. she never saw the tumor, it was encased in the tissue. she got more than a 2cm clear margin around it. she and my oncologist was very pleased.  i started chemo. one week i get gemcitabine and the next wk i get gemcitabine & taxotere. then a wk off. this makes one 21 day cycle. i may be getting 4-6 cycles. right now i am cancer free. no tumor and no metastizing.. today i went in for my neulasta shot. i feel fine. there is only one other person around my area, that my drs. know of who have had this. she is cancer free for 4 yrs in march. i have talked to her and she is doing fine. she apparently had her whole breast affected. she had chemo. first because she couldn't have the surgery. to involved. mine was a single tumor. it had come  high grade, as most are...i was told i had a hematoma in mar. it presented itself with a sm lump and blue bruise look. over the summer it changed to a blood blister than to a blood filld lumpy thing. i thought it was a hematoma. i went back to surgeon in sept. thank god, after all that time, it had not spread. so i guess what they look for is getting it all out with good margins. no matastizing, and follow up chemo.  please let me know how you are and what yours looks like. after reading these cancer sites, there is alot mor out there like us than they think... take care and good luck.

survivor9