there must be new info on breast angiosarcoma
survivor9yrs
Comments
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Breast Radiation
Hello,
I have had radiation on both of my breasts. I can't give you any info on the cancer you are talking about, but I would like to know all the details that you know. I have never heard of this cancer you are talking about. I had radiation in 1991 and 2008. No doctor has ever mentioned this cancer you are talking about to me. Thank-You, Paula0 -
breast radiationcancer survivor x 4 said:Breast Radiation
Hello,
I have had radiation on both of my breasts. I can't give you any info on the cancer you are talking about, but I would like to know all the details that you know. I have never heard of this cancer you are talking about. I had radiation in 1991 and 2008. No doctor has ever mentioned this cancer you are talking about to me. Thank-You, Paula
Hi Paula,
I do hope you are doing well. I had radiation in 2000. in mar. i noticed a sm. lump and bruise. told it was a hematoma. in sept. i went back and had a biopsy. secondary angiosarcoma of the breast. this is a rare cancer form the radiation. it seems to be out there quite a bit, from all the forums i have read. it will look like a bruise or blood blister early on. then it just grows. it is a very agressive cancer of the blood vessels and matastasizes. i was never told 9 yrs ago either. they say radiation can cause cancer but no name has ever been put to it. there are 2 of us in a rural tri-county area. the other lady had it almost 4 yrs ago and is doing well. information is so scarce one it. most drs. don't even know what it looks like. my oncologist knows so little abt. it. he has me on gemcitabine and taxotere. 6 cycles, if i can tolerate it. i start cycle 2 tomorrow. so far so good. prognosis is hard to say. it has a high recurrence rate. usually on the incision. it is just something that will have to be watched closely. just what i wanted, more dr appts and more life with cancer. i was fortunate, it had not spread and the surgeon was able to remove it all with goodd margins. i guess, total surgical removal is the key. just be aware of it. if only i had found a site abt. angiosarcoma, instead of looking at hematomas, i would of known what it was from the pictures. remember, it is rare, but be vigilant.
survivor9yrs.0 -
Angiosarcomasurvivor9yrs said:breast radiation
Hi Paula,
I do hope you are doing well. I had radiation in 2000. in mar. i noticed a sm. lump and bruise. told it was a hematoma. in sept. i went back and had a biopsy. secondary angiosarcoma of the breast. this is a rare cancer form the radiation. it seems to be out there quite a bit, from all the forums i have read. it will look like a bruise or blood blister early on. then it just grows. it is a very agressive cancer of the blood vessels and matastasizes. i was never told 9 yrs ago either. they say radiation can cause cancer but no name has ever been put to it. there are 2 of us in a rural tri-county area. the other lady had it almost 4 yrs ago and is doing well. information is so scarce one it. most drs. don't even know what it looks like. my oncologist knows so little abt. it. he has me on gemcitabine and taxotere. 6 cycles, if i can tolerate it. i start cycle 2 tomorrow. so far so good. prognosis is hard to say. it has a high recurrence rate. usually on the incision. it is just something that will have to be watched closely. just what i wanted, more dr appts and more life with cancer. i was fortunate, it had not spread and the surgeon was able to remove it all with goodd margins. i guess, total surgical removal is the key. just be aware of it. if only i had found a site abt. angiosarcoma, instead of looking at hematomas, i would of known what it was from the pictures. remember, it is rare, but be vigilant.
survivor9yrs.
Hello,
thank-you for answering my post. Like I said before, I have never heard of it. I even tried to google it and nothing came up, except regular sarcoma. I have an appointment with my oncologist on Thursday and we are must definetly going to have a talk about this. I have had radiation on both breasts and someone should have mentioned it to me. I do not care how rare it is. Like I need something else to worry about. Sometimes I wonder about all this medical treatment we receive. Is it hurting us more then it is helping us? Anyway, I will let you know what my oncologist has to say about it. I will be watching what is left of my breasts very carefully. Thank-You, Paula0 -
angiosarcomacancer survivor x 4 said:Angiosarcoma
Hello,
thank-you for answering my post. Like I said before, I have never heard of it. I even tried to google it and nothing came up, except regular sarcoma. I have an appointment with my oncologist on Thursday and we are must definetly going to have a talk about this. I have had radiation on both breasts and someone should have mentioned it to me. I do not care how rare it is. Like I need something else to worry about. Sometimes I wonder about all this medical treatment we receive. Is it hurting us more then it is helping us? Anyway, I will let you know what my oncologist has to say about it. I will be watching what is left of my breasts very carefully. Thank-You, Paula
Paula,
it's a good thing to talk with your dr. when i talked to my oncologist about this cancer being from the radiation. he hedged, but said it was more likely from a bump on the radiated site which in turn caused the cancer. my breast had thickened on the underside from the raddiation. they don't want to admit it is from the radiation. but all reports i have read, it is. it is a secondary breast angiosarcoma. i will be most interested on what your oncologist has to say. i have so many, should of's, in my life. if only i had had a mastectomy 9 yrs. ago. my bc was early. i didn't have chemo. my choice was wrong and now i face a very uncertain future. today was chemo day and the day i had my hair all removed. it was falling out in clumps. so not a good day. when it rains it pours....i don't even want to think what this chemo is doing to my body or what it might do to it later. but i want to tell you not to worry but i can't. i'm worried. so many women out there who have had radiation. chances are in your favor you will never have to face this. i pray.... will keep cking the post to hear from you. take care and stay well
survivor9yrs0 -
angiosarcomacancer survivor x 4 said:Angiosarcoma
Hello,
thank-you for answering my post. Like I said before, I have never heard of it. I even tried to google it and nothing came up, except regular sarcoma. I have an appointment with my oncologist on Thursday and we are must definetly going to have a talk about this. I have had radiation on both breasts and someone should have mentioned it to me. I do not care how rare it is. Like I need something else to worry about. Sometimes I wonder about all this medical treatment we receive. Is it hurting us more then it is helping us? Anyway, I will let you know what my oncologist has to say about it. I will be watching what is left of my breasts very carefully. Thank-You, Paula
paula,
saw my surgeon today. found out she has seen another case of AS. i don't know how long ago, but the person had BC in one breast. she developed a sm leison on the other breast. it turned out to be a primary AS. unreal.... i'm not so sure this is a rare cancer anymore. they have developed a new drug for mastastic AS. so that also tells me, their eyes have been opened.
stay healthy
survivor9yrs0 -
Angiosarcomasurvivor9yrs said:angiosarcoma
paula,
saw my surgeon today. found out she has seen another case of AS. i don't know how long ago, but the person had BC in one breast. she developed a sm leison on the other breast. it turned out to be a primary AS. unreal.... i'm not so sure this is a rare cancer anymore. they have developed a new drug for mastastic AS. so that also tells me, their eyes have been opened.
stay healthy
survivor9yrs
Hello,
it's been a long day. I had my port flushed today and talked to my oncologist. He knew what I was talking about before I could get the word out of my mouth. He said he has been an oncologist for 25 years and has treated thousands of females and a handful of males that have had radiation on their breasts and he has only ever seen 2 cases of Angiosarcoma. He said it is very rare and the chances of getting it are less then 1%. He did tell me what it looks like, so I know what to be looking for. He did agree that it is a very serious cancer to have. I will be ever watchful and I have to see my oncologist every 3 monthes for a year, so they will be keeping an eye on me. Thank-You for bringing this issue to my attention and Good Luck. Paula
P.S. What state do you live in?0 -
angiosarcomacancer survivor x 4 said:Angiosarcoma
Hello,
it's been a long day. I had my port flushed today and talked to my oncologist. He knew what I was talking about before I could get the word out of my mouth. He said he has been an oncologist for 25 years and has treated thousands of females and a handful of males that have had radiation on their breasts and he has only ever seen 2 cases of Angiosarcoma. He said it is very rare and the chances of getting it are less then 1%. He did tell me what it looks like, so I know what to be looking for. He did agree that it is a very serious cancer to have. I will be ever watchful and I have to see my oncologist every 3 monthes for a year, so they will be keeping an eye on me. Thank-You for bringing this issue to my attention and Good Luck. Paula
P.S. What state do you live in?
I couldn't imagine a oncologist not knowing about it. It is very rare, but just how rare. I think they need to update some statistics. 3 seen by my surgeon in a rural area of NY. Where are you located. Did your Dr. give any more statistics on it. It is very serious. It's all in getting it out, no matastizing, and no recurrance. So here's hoping. Are you undergoing chemo. now? I started my 2nd cycle yest. Just be very vigil and don't take any little change for granted. I will keep you in my prayers.
Linda0 -
AS is one of the very raresurvivor9yrs said:angiosarcoma
I couldn't imagine a oncologist not knowing about it. It is very rare, but just how rare. I think they need to update some statistics. 3 seen by my surgeon in a rural area of NY. Where are you located. Did your Dr. give any more statistics on it. It is very serious. It's all in getting it out, no matastizing, and no recurrance. So here's hoping. Are you undergoing chemo. now? I started my 2nd cycle yest. Just be very vigil and don't take any little change for granted. I will keep you in my prayers.
Linda
AS is one of the very rare secondary cancers from radiation treatment. Most MD's categorize it under the consent form as the risk of developing a secondary cancer from our treatments. Less than 500 cases have been diagnosed in the world....I was blessed with the gift of low grade AS, which meant I did not need chemo, I underwent bilateral mastectomies, I have had multiple surgeries removing any suspicious lesions, and although low grade it is so rare no one really knows..... I always wonder about everyone out there that may be at risk and that may not have this information. I have attempted to post about it previously. But as you can imagine, I do not want to upset or scare those that are undergoing their initial cancer treatment.......I am glad you are writing about it. At times this has been a lonely journey for me. At the moment I am awaiting a path report on a recent surgery........
Regarding AS follow-up, I think to be vigilant is the key, any new lesion should be biopsied right away, if suspicious for AVL a wide excision should be performed, 3 month check ups for 2 years, 6 month check ups for a minimum of 2 years and alternating evaluations from a Dermatologist Oncologist.....Your pathologist needs to be expert in AS as well........I have read all of the recent literature and would be more than happy to provide you with the latest articles driving care for AS at this time. Just let me know.
Always BELIEVE!!!0 -
as is one of the very rareBELIEVEx3 said:AS is one of the very rare
AS is one of the very rare secondary cancers from radiation treatment. Most MD's categorize it under the consent form as the risk of developing a secondary cancer from our treatments. Less than 500 cases have been diagnosed in the world....I was blessed with the gift of low grade AS, which meant I did not need chemo, I underwent bilateral mastectomies, I have had multiple surgeries removing any suspicious lesions, and although low grade it is so rare no one really knows..... I always wonder about everyone out there that may be at risk and that may not have this information. I have attempted to post about it previously. But as you can imagine, I do not want to upset or scare those that are undergoing their initial cancer treatment.......I am glad you are writing about it. At times this has been a lonely journey for me. At the moment I am awaiting a path report on a recent surgery........
Regarding AS follow-up, I think to be vigilant is the key, any new lesion should be biopsied right away, if suspicious for AVL a wide excision should be performed, 3 month check ups for 2 years, 6 month check ups for a minimum of 2 years and alternating evaluations from a Dermatologist Oncologist.....Your pathologist needs to be expert in AS as well........I have read all of the recent literature and would be more than happy to provide you with the latest articles driving care for AS at this time. Just let me know.
Always BELIEVE!!!
believex3
i am really beginning to wonder jsut how rare this cancer is anymore. i just found out there are 3 cases seen by my surgeon in a rural area. that's alot. with all the cancer forums and all the women i find with AS, i think very rare is obsolete. i had high grade but it was one tumor and localized. i don't want to upset any one either, but here are a couple of replys i have had. one lady was abt. to have surgery for bc. her drs. were trying to talk her into a lumpectomy. she just had a gut feeling not to. after reading abt. as she has decided to do the mast. another who has had radiation twice, asked her dr. about it. fefore she could get it out he knew exactly what she was referring to. told her what to look for. to me that is saving someones life, i wish i had known. i would never have guessed that what i was looking at on my breast was cancer. i know my drs. are watching. my scans were clear, no matastic lesions. that is half the battle. i would be very interested in the literature you have.
i wish the best for your lab report. what have all the past lesions been.
survivor9yrs.0 -
I am exhausted tonight postsurvivor9yrs said:as is one of the very rare
believex3
i am really beginning to wonder jsut how rare this cancer is anymore. i just found out there are 3 cases seen by my surgeon in a rural area. that's alot. with all the cancer forums and all the women i find with AS, i think very rare is obsolete. i had high grade but it was one tumor and localized. i don't want to upset any one either, but here are a couple of replys i have had. one lady was abt. to have surgery for bc. her drs. were trying to talk her into a lumpectomy. she just had a gut feeling not to. after reading abt. as she has decided to do the mast. another who has had radiation twice, asked her dr. about it. fefore she could get it out he knew exactly what she was referring to. told her what to look for. to me that is saving someones life, i wish i had known. i would never have guessed that what i was looking at on my breast was cancer. i know my drs. are watching. my scans were clear, no matastic lesions. that is half the battle. i would be very interested in the literature you have.
i wish the best for your lab report. what have all the past lesions been.
survivor9yrs.
I am exhausted tonight post op day 5 from a hysterectomy ruling out another sarcoma......
I will send you info tomorrow.
I agree that I truly wonder how rare it is and if there are others out there that may have it. I initially wanted bilateral mastectomies but was told a young woman was better off with both of her breasts. UNBELIEVABLE!!! however in the end regardless I would have required radiation as a part of my protocol. I had positive lymph nodes.... My AS was so subtle no one believed it was anything to worry about and that is what concerns me most for myself and others.....I will write more tomorrow...There are subtle changes noted on mammograms that everyone should be aware of.......
BELIEVEx30 -
i am exhausted tonight postBELIEVEx3 said:I am exhausted tonight post
I am exhausted tonight post op day 5 from a hysterectomy ruling out another sarcoma......
I will send you info tomorrow.
I agree that I truly wonder how rare it is and if there are others out there that may have it. I initially wanted bilateral mastectomies but was told a young woman was better off with both of her breasts. UNBELIEVABLE!!! however in the end regardless I would have required radiation as a part of my protocol. I had positive lymph nodes.... My AS was so subtle no one believed it was anything to worry about and that is what concerns me most for myself and others.....I will write more tomorrow...There are subtle changes noted on mammograms that everyone should be aware of.......
BELIEVEx3
you just had a hysterectomy 5 days ago? i do hope you are doing well... i was told my AS was a hematoma by 2 drs. after changes and concerns abt. it draining i went back and all hell broke lose. all that time i thought i had a hematoma. i was on hemotoma sites and so many women were discribing the same thing. now i wonder if all these women were misdiagnosed too. any way just talked to my surgeon today abt. it's rarety. she maintains it is rare. but just get on some of the cancer forums.. so many women in our shoes. i just can't believe it is that rare anymore... i had just had a mamo in jan. and all ok... mar i noticed the bruise and lump... i guess the mamo gave everyone the false hope. take care and rest. i had a hysterectomy 30 yrs. ago.. never missed those body parts..survivor9yrs0 -
Sistersurvivor9yrs said:i am exhausted tonight post
you just had a hysterectomy 5 days ago? i do hope you are doing well... i was told my AS was a hematoma by 2 drs. after changes and concerns abt. it draining i went back and all hell broke lose. all that time i thought i had a hematoma. i was on hemotoma sites and so many women were discribing the same thing. now i wonder if all these women were misdiagnosed too. any way just talked to my surgeon today abt. it's rarety. she maintains it is rare. but just get on some of the cancer forums.. so many women in our shoes. i just can't believe it is that rare anymore... i had just had a mamo in jan. and all ok... mar i noticed the bruise and lump... i guess the mamo gave everyone the false hope. take care and rest. i had a hysterectomy 30 yrs. ago.. never missed those body parts..survivor9yrs
Hi,
My sister just got rediagnosed with Angiosarcoma in her other breast. She was 25 the first time it happened, got a mastectomy and chemo done. Now, almost four years later, it came back in her other breast, although this time it is very small and so she should just need a lumpectomy. It just is so discouraging that it came back. I wish I had more info on it, as well. She never had any kind of radiation done to cause this, although she did live in an agricultural rich area, so I wonder if any pesticides or stuff had anything to do with it.
I wish I had more info to give you. Her surgery is tomorrow. I guess I just am wondering if she should have her other breast removed because of the aggressiveness of the tumor. It's so small this time, though, but I just worry if in three years, it will keep coming back.0 -
sistercm5 said:Sister
Hi,
My sister just got rediagnosed with Angiosarcoma in her other breast. She was 25 the first time it happened, got a mastectomy and chemo done. Now, almost four years later, it came back in her other breast, although this time it is very small and so she should just need a lumpectomy. It just is so discouraging that it came back. I wish I had more info on it, as well. She never had any kind of radiation done to cause this, although she did live in an agricultural rich area, so I wonder if any pesticides or stuff had anything to do with it.
I wish I had more info to give you. Her surgery is tomorrow. I guess I just am wondering if she should have her other breast removed because of the aggressiveness of the tumor. It's so small this time, though, but I just worry if in three years, it will keep coming back.
CM5..........so sorry to hear about your sister. it is just plain cruel for anyone to have to go through cancer a second time. i take it your sister had primary AS. as for me, i hope to have my other breast removed as soon as i can. i'm not fooling around. i'm not taking the chance of getting this or BC in the other one. for the sake of a glob of fat, my life is worth more. how invloved was her first AS? I do wish her well. Let me know how she does.
survivor9yrs0 -
How are you doing?survivor9yrs said:sister
CM5..........so sorry to hear about your sister. it is just plain cruel for anyone to have to go through cancer a second time. i take it your sister had primary AS. as for me, i hope to have my other breast removed as soon as i can. i'm not fooling around. i'm not taking the chance of getting this or BC in the other one. for the sake of a glob of fat, my life is worth more. how invloved was her first AS? I do wish her well. Let me know how she does.
survivor9yrs
Good Morning,
Just wanted to see how you were doing? Paula0 -
how are you doingcancer survivor x 4 said:How are you doing?
Good Morning,
Just wanted to see how you were doing? Paula
not sure who you are referring to, but i'm doing good. how about you? have 2 more cycles of chemo. can't wait to be done. tired... spend most of my time at drs. guess i had better get use to it... again... life is worth all the dr appts. and chemo and whatever they throw at me.. being a survivor again is my goal. take care
survivor9yrs0 -
hello
hi,,, i am a primary as survivor almost 1 yr.... on facebook i have a group called... AngioSarcoma Cancer
there are a lot of people connecting there... if you can join...
together we stand strong..and we will prevail!0 -
AS hellolaurenstacy said:hello
hi,,, i am a primary as survivor almost 1 yr.... on facebook i have a group called... AngioSarcoma Cancer
there are a lot of people connecting there... if you can join...
together we stand strong..and we will prevail!
i have been in contact with precious... we chat via email.. i do hope you are doing well. so far so good for me. maybe someday i will join facebook again..
survivor90 -
AS Group on Facebooklaurenstacy said:hello
hi,,, i am a primary as survivor almost 1 yr.... on facebook i have a group called... AngioSarcoma Cancer
there are a lot of people connecting there... if you can join...
together we stand strong..and we will prevail!
Hello,
I am very interested in joining the AS group on Facebook. Can you tell me how to get to it. I only have a fleeting knowledge of FB, but I think this is a great idea. There are so few of us compared to other cancers.0 -
Just heard about
I am 14 year breast cancer survivor of IDC stage 3 with 11 out of 21 positive nodes as well as being HER triple negative something I just found out about my cancer all these 14 years later. I found a very small tumor on my right arm and then a month later another lump grew quickly and still growing while trying to have these diagnosed.
Yes a little scary since this is exactly how my breast cancer started, a very small lump then a fast growing tumor in lymphnodes less than six months after first lump found. I have had many of the same symptoms I had all those years ago as well but because I am not deathly ill seem to think nothing to worry about.
I have had CT scans which found the small lump and this other area no a tumor but inconclusive. MRI sees both lumps with dye the large one not seen without and inconclusive for cancer. There was mention of this being some reaction after radiation all those years ago but surgeon doesn't think it is relevant. Consulting with Radiologist now and other doctors since still do not know what it is but like last cancer chances of being cancer are slim to none.
I am having pain and they tell me tumor couldn't do it but they said that when I had a golf size tumor in lymphnodes that was killing me pressing on all sorts of nerves. What this big lump in my arm can't be pressing on nerves?? No concern even for how quickly this second lump grew even and finally surgeon mentioned possible sarcoma first time anyone has mentioned a cancer when they only wondered why I thought I had breast cancer in my arm. I don't, but if I did not make sure these lumps are not cancerous then they would wonder why I didn't come earlier when I found the things.
Has anyone else found lumps between bicept and tricept that grew quickly or did any of your lumps grow within a few weeks to the size of a plum but longer.
You know it is scary when the doctors cannot feel this large lump and this is their business and I seem to be able to find the lumps when they are the size of peas and only because they are paining me.
Been quite a ride this time
Tara0 -
My journey is just starting.24242 said:Just heard about
I am 14 year breast cancer survivor of IDC stage 3 with 11 out of 21 positive nodes as well as being HER triple negative something I just found out about my cancer all these 14 years later. I found a very small tumor on my right arm and then a month later another lump grew quickly and still growing while trying to have these diagnosed.
Yes a little scary since this is exactly how my breast cancer started, a very small lump then a fast growing tumor in lymphnodes less than six months after first lump found. I have had many of the same symptoms I had all those years ago as well but because I am not deathly ill seem to think nothing to worry about.
I have had CT scans which found the small lump and this other area no a tumor but inconclusive. MRI sees both lumps with dye the large one not seen without and inconclusive for cancer. There was mention of this being some reaction after radiation all those years ago but surgeon doesn't think it is relevant. Consulting with Radiologist now and other doctors since still do not know what it is but like last cancer chances of being cancer are slim to none.
I am having pain and they tell me tumor couldn't do it but they said that when I had a golf size tumor in lymphnodes that was killing me pressing on all sorts of nerves. What this big lump in my arm can't be pressing on nerves?? No concern even for how quickly this second lump grew even and finally surgeon mentioned possible sarcoma first time anyone has mentioned a cancer when they only wondered why I thought I had breast cancer in my arm. I don't, but if I did not make sure these lumps are not cancerous then they would wonder why I didn't come earlier when I found the things.
Has anyone else found lumps between bicept and tricept that grew quickly or did any of your lumps grow within a few weeks to the size of a plum but longer.
You know it is scary when the doctors cannot feel this large lump and this is their business and I seem to be able to find the lumps when they are the size of peas and only because they are paining me.
Been quite a ride this time
Tara
First, was I ever glad to find this sight! Like most here, have had difficulty finding information on angiosarcoma. However, unlike most of you, I haven't gotten from previous breast cancer treatment. Until now, my breast exams were fine. Actually I found the football lump myself. Hence I'm considered to have primary angiosarcoma in my left breast.
Apparently, as you'all seem to know, it's hard to diagnose. MD Anderson in Texas actually sends samples to John Hopkins Hospital for a confirmation after removing the lump. Unfortunately where I am, cancer centers aren't tops in the country.
If anyone has had treatment for this in California, I'd love to hear from you. It's a scary buggard to have and I'm trying to think as positively as I can! I have surgeon appointment in about an hour I guess to see what the next step is after the positive biopsy. I'm thinking total masectomy, but I don't have anyone to help me during the recovery. A breast cancer survivor friend who had total masectomy said it was very difficult to move and get comfortable because you couldn't really use either arm.
Anyway, if anyone can or doesn't mind sharing, I'd truly appreciate it.
Thanks so very much.
Kaliki0
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