Angiosarcoma

Mdisonquin

My cousin was just diaganosed with this.  She had breast cancer years ago and had a lumpectomy with radiation. She also had lymphodema It started below that breast with a discoloration and bruising.  In time it turned into a red rash.  Eventually is became a large rash with blood blisters.  She saw many doctors and they all just shook their heads and said hmmmm  never saw anything like this.  Her surgeon did a couple of surface biopsies and they were negative.  Finally after over a year, he did a deep tissue biopsy and found it to be angiosarcoma.  It is very rare, aggressive and treatable but not curable.  Is there anyone with these symptons or confirmation.  Feel free to email me.

leaf

LCIS usually has no symptoms whatsoever.

Here's a link to e-medicine for angiosarcoma. http://emedicine.medscape.com/article/276512-overview

Since it sounds like it can be linked to lymphedema, you may want to post on the lymphedema forum.  It sounds like its a very rare type of cancer.

Best wishes to you and your cousin.

LateForTheSky

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.

TenderIsOurMight

Congratulations LateForTheSky. You really fought it hard.

 Might I ask if your breast angiosarcoma was considered "primary", meaning a blood vessel sarcoma presenting in the breast tissue or "secondary" as Mdisonquin's cousin seems to have, developing after radiation? I don't believe the treatment differs, namely wide excision and chemotherapy btw.

How is your cousin doing, Mdisonquin? Is she being treated at a specialty hospital?

Tender

Binney4

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 

laurenstacy

hello everyone...

i hope that those who posted above are doing well today... my prayers and best wishes go to you...  

i was recently this past March diagnosed with primary angiosarcoma.  It happened in my right breast.  my husband noticed bruising under my breast and asked me what happened.  i had no clue what he was talking about.  i then went to look in the mirror and when i lifted up my breast i could of dropped.  i never saw a bruise that big on my breast!!!!  i called my dr adn she took me in right away.  she said that she would not worry about it.  that it looks like a trauma to the breast.  i assured her that i would of felt that hit and i didn't get hurt at all.  she agreed.  and just on that little worry she sent me for a mamo and also put into my insurance company to get a mri done.

imagine this... my insurance company denied the mri due to lack of evidence.  now my bioligical mother had it in both her breasts... 2 lil tumors that she got out in time.. and a great aunt died of breast cancer to.....  and they still denied it!!   if you are reading this and unsure about something in ur breast... PUSH the issue and get that mri... some way, some how, fight for it. and don't give up even if it turns out to be nothing.... 

this is why:

my dr. was concerned only cause i didn't remember getting hurt.  she never saw anything like this.  so she really said.. i wouldn't worry.. but i still want you to get checked... so with the denial of mri i went and did the mamo... while we were waiting on that... my dr. sent me to the surgeon here to take a look and push the mri.  the surgeon also said it looks like a bad bruise.  again, i told him i didn't get hit or i would of remembered.  and this concerned him to.  but he was sure it was a trauma.  however he went for the mri approval.  i asked him what if they deny it again.  he said "that's when i get on the phone and get it."  i was sure it will be approved.

and it was.  and i get it.  and now i need a biopsy due to 2 masses and 1 other small one.  so i go get the biopsy and i learned there that i do have a form of breast cancer.  they were awesome in telling me and helping me tell my mother.

the results are in and my husband and i go to the surgeon.  he sat us down and started talking.  i felt like i was in a lifetime movie drama.  it was the most surreal time in my life, besides 9/11, that i had.  i remember him telling me that in his 27 yrs of practice he never seen this before.   he said that removal of the breast will be the best solution and possible treatments.  he also told me to get a second opinion.  which i was that next day at memorial sloan kettering in manhattan.

i first saw a breast cancer dr who could not take my case cause it went out of her field of expertise.  she then recommended me to dr. murray brennan.  whom i saw the next visit.  all this time i am NOT going on the internet.  and told everyone do not tell me anything.  i know i would not of handled it well.  so far i am cruising along with an incredible optimistic attitude...  i knew that dr. brennan would fix me when i met him. 

and he did.  i had a masectomy with a skin graph on may 19.  today is june 29th and i am almost 90% healed.  my margins are also clear and i do not need any treatments.  all i do is watch and wait now. 

dr. brennan is optimistic about it not reoccuring but can't promise that.  i feel good about that.  however.... i only read about 1 person  being 5 yrs with out reoccurance.  i haven't found any others. 

i did go on the internet when i came home from the surgery.  and read up on everything i could find to educate myself on what i am looking forward to.  i was ready to see it all.

does anyone out there also have primary angiosarcoma of the breast??????  can anyone help me with any more information.

yes i spoke to my dr. about it and he was straight forward and also emphasized that each patient is different...  don't forget that one to.

leaf

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?

laurenstacy

hi leaf..

thank you so much.  i like straighfowardness... there is really no way to sugar coat this..i appreciate the time you took to help me understand this a bit more...

xo..lauren

guera

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

Binney4

guera says:

Hello. I'm from Mexico. My niece has primary angiosarcoma of the breast. She wants to know how your cancer is and what medicine you used to survive?

(Bienvenidos, Guera.)

laurenstacy

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

laurenstacy

Hi Guera,

I am sorry to hear of the news of your niece.  I can only tell you of my own story.  I didn't need any meds... the only way to cure it was a masectomy (removal of my breast). 

Binney.... if you scroll up on this message board I wrote my entire story if you can share with Guera i think she will have a better understanding.

Is her niece seeing a specialist?  Does Mexico have a hospital that specializes in cancer? 

All I knwo about our cancer is that it is aggressive and if not treated as soon as possible it can end bad. 

Please keep me posted on how she is doing...

All my best wishes and prayers....  Lauren

nowheregirl

                

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

leaf

To me, "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

means that about half of the angiosarcoma patients died before they reached the 10 year mark, and about half of the angiosarcoma patients survived past the 10 year mark.  I think that OS means overall survival.  I would think this would mean death from ANY cause, including causes that are unrelated to angiosarcoma, or treatment regimens.

DFS I think means 'disease free survival', in other words, the % of women who lived at least 10 years after their diagnosis, and who did not have any evidence of their angiosarcoma.

My very best wishes to you.

guera

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

guera

hola : soy de mexico, quisiera mas informacion de angiosarcoma a mi sobrina de 22 años le detectaron angiosarcoma primario de mama, le hicieron masectomia, 6 sesiones de radioterapia yen unos dias empieza quimioterapia. quisiera saber que tipo de droga es la mas usada para angiosarcoma y que resultados han tenido

Binney4

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

leaf

This study http://www.ncbi.nlm.nih.gov/pubmed/19127256   on 2 angiosarcoma patients used Everolimus 15-30mg with Paclitaxel 80mg/m2 on days 1,8, and 15 every 28 days.

In this study http://www.ncbi.nlm.nih.gov/pubmed/19051469 no one survived without having surgery.

In this study of 3 patients, they used "adriamycin 40 mg/m2 day 1, ifosfamide 3 g/m2 day 1-2, cisplatin 35 mg/m2 day 1-2 and paclitaxel 175 mg/m2 day 3 " with meaningful responses. http://www.ncbi.nlm.nih.gov/pubmed/19031953

This study http://www.ncbi.nlm.nih.gov/pubmed/18813119 suggests tumor grade was not related to survival.

Binney4

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!

guera

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

guera

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

guera

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

laurenstacy

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

Binney4

Ah, yes, Lauren -- the "what now?" time afterward is a nasty surprise, yes? For everyone around you, too. They all seem to think you should be grateful and put it all behind you but...so many "left-over" emotions to deal with!

I decided -- for myself at least -- the cancer diagnosis was a kind of grief or loss experience, and I needed to give myself the room and time to work through it, just as anyone else who suffers a huge loss. Be gentle to yourself, and do let those who love you into your thoughts and feelings as much as you're able so they can know how to be supportive.

It gets better.

Warm hugs,
Binney

leaf

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.

survivor9

as a 9 yr BC survivor, i find myself facing yet another cancer. angiosarcoma of the breast, due to the radiation i received. someone being a 5 1/2 yrs survivor of this is such a boost. i am very worried over this cancer. i was told it was a hematoma in mar. in sept. i went back and had a biopsy. one tumor abt. 3-3 1/2 cm. having surgery on 21. sure they can remove it all. unattcahed to anything. pet and ct scans clear. will do chemo after surgery. talking abt. taxotere and adriamycin... if anyone has any info. for me, i would so appreciate it.

Carolynlg

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

We're just about in the same boat. I was diagnosed in Oct 09 as well. I'm still floundering with what all I can learn. Please let me know what you are learing and how you are doing.

survivor9

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

survivor9

carolynlg

if you would like i will give you my email and we can go through this together. betwwen your drs. and mine we can compare notes. and treatments.

survivor9

laurenstacy

Hello..

 Now it is April 2010... May 19th will mark my one year... just had scans and all is clear...

Just wanted you all to know that on facebook I have a group called AngioSarcoma Cancer

as well as a very new web site going called   www.angiosarcomacancer.com

 Please join us... the more we have the better we will be...

All my best and hope and pray that all of you are doing as well.. and is in good health..xoxo