CancerCompass message board discussion started by elaine r. on 11/29/2002 http://www.cancercompass.com/message-board/message/all,484,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I would like to know if there is anyone who has been or is being treated for angiosarcoma of the breast I was operated a week ago. A simple mastecomy. I would appreciate the experience of anyone with this type of cancer because I was told it was very rare. elaine r. Fri, 29 Nov 2002 00:00:00 GMT Elaine - I am wonder how you are doing, and what treatment you eventually had. I do sincerly hope you are well and receiving his message. Last week my mother was diagosed with angiosarcoma, and just went through a test series to see if it's spread. She's scared (we all are), it's rare, and I'd just like to tell her about someone else that's gone thru the same thing, and what she can expect. Thanks, Susan Susan7 Wed, 30 Mar 2005 00:00:00 GMT Susan, How is your mother? My niece has angiosarcoma that started in the breast. I am looking for more information. Thanks. Oakey Tue, 26 Apr 2005 00:00:00 GMT Susan- My mother was just diagnosed with breast angiosarcorma, how is your niece? What treatment has she received? Thank you, Amy Amyrez Tue, 24 May 2005 00:00:00 GMT My sister was diagnosed with primary angiosarcoma of the breast 4 years ago and received excellent (yet aggressive treatment) from MD Anderson in Texas. They are considered one of the experts in the field for this type of cancer. She had amazing response to the chemo and radiation which destroyed most of the tumor. She was on interferon for a year after treatment with no reoccurence, but the cancer was eventually found to have spread to her ovary (which has also been successfully treated with additional chemo) We are blessed that her last CATscan was clear! She has an amazing positive attitude and a strong faith, which I believe along with the great care from MD Anderson has provided her with a cure. It was a scary time for our entire family, but she is living proof that miracles do happen. If anyone needs specifics on treatment or advice, please feel free to write. God Bless! Mcchris Wed, 15 Jun 2005 00:00:00 GMT hi my best friend has just found out he has angiosarcoma of the blood vessel it has spread to the liver. Does anyone have any information or advice on where to go, i was considering alternative ways. He has had 2 chemo treatments now and I have heard nothing but negative things about chemo? Melanie85 Mon, 19 Sep 2005 00:00:00 GMT I have a close friend that was diagnosed w/Angiosarcoma in August. She is going to M.D.Anderson 11-11 and has faith and hope that they will be able to help her. She had breast cancer 5 yrs. ago; a lumpectomy was performed followed by radiation. This spring she noticed a "bruise" on the same breast; tests/diagnosis said it was Angiosarcoma caused by the radiation she had. A mastectomy was performed and into 7 wks of recuperation she noticed a lump by the scar. She traveled to LA and UCLA and a dr. there said "no more radiation!" She then followed through by calling M.D.Anderson and sending them all her records and tests. I am confident she is following the right path to recovery; and strengthened to hear other stories re Anderson, treatment and recovery. Thank You. Browning Thu, 03 Nov 2005 00:00:00 GMT Read your post- my sister just diagnosed with angiosarcoma of breast. Did not arise from lumpectomy or radiation. It came spontaneously. She is in early stages, looks like mastectomy in future and she is going out of state for more consultation soon. Would like some info on specifics of treatment if you care to share. Thanks so much- PLEASE write to --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Cindys Sis Tue, 14 Feb 2006 00:00:00 GMT I was diagnosed with Angiosarcoma of the breast in 1995. As with your sister, this was not precipitated by radiation. The only treatment that was recommended was surgery. Had mastectomy but no chemo at The Arthur James Hospital in Columbus OH (affiliated with Ohio State U.) They are a comprehensive cancer care center. No reoccurences! Tell her to have faith, keep her sense of humor and eat healthy. Best wishes for her recovery. Leslieb Thu, 13 Apr 2006 00:00:00 GMT A relative is going through chemo for angio. I've only read about dim results for this type of cancer...your message brought me so much hope but is your case a rare success? Marie 30 Fri, 16 Jun 2006 00:00:00 GMT My wife was diagnosed with radiation induced angiosarcoma at Roswel cancer center in Buffalo, NY. We meet with the medical oncologist for the plan of attack on Friday, July 20, 2006. Jdh45 Thu, 20 Jul 2006 00:00:00 GMT I was diagnosed with primary AS of the breast 4 days before my 47th birthday (April 2006). I had a modified radical mastectomy 3 weeks later that had negative margins and was negative for spread to lymph nodes. CT and PET scan (mid thigh to base of the skull) showed no visible mets. I am currently undergoing Intensity Modulated Radiation Therapy to "clean" the surgical field, and that will be followed by chemo, although we are not sure which regimen yet. Either Adriamycin, Ifosfamide, and Mesna OR Adriamycin and Taxol. 6 cycles. We are rare indeed. I'd be interested in hearing of your experiences with this beast! Angio47 Wed, 02 Aug 2006 00:00:00 GMT Hi- I am 31 years old and was diagnosed with primary angiosarcoma of the breast earlier this summer. I'm 2 weeks out from my mastectomy and thankfully they got clean margins! At this time, Dana-Farber is recommending scanning every 3 months- no chemo or radiation at this this time. Because this disease is so rare, they told me that no formal studies have been done on the effectiveness of chemo. And while chemo may not work, there is a chance it could. The decision is mine to make. Currently I'm scheduling 2nd opinions at Sloan and MD Anderson. Where did you go for your treatment and what did they recommend? Have you looked in alternative treatments? I'm so glad I found this site. It's the first hopeful thing I've read on angiosarcomas. Thanks for any and all info!! Emily Miami-em Tue, 29 Aug 2006 00:00:00 GMT  On 8/29/2006 Miami-em wrote:Hi- I am 31 years old and was diagnosed with primary angiosarcoma of the breast earlier this summer. I'm 2 weeks out from my mastectomy and thankfully they got clean margins! At this time, Dana-Farber is recommending scanning every 3 months- no chemo or radiation at this this time. Because this disease is so rare, they told me that no formal studies have been done on the effectiveness of chemo. And while chemo may not work, there is a chance it could. The decision is mine to make. Currently I'm scheduling 2nd opinions at Sloan and MD Anderson. Where did you go for your treatment and what did they recommend? Have you looked in alternative treatments? I'm so glad I found this site. It's the first hopeful thing I've read on angiosarcomas. Thanks for any and all info!! Emily HI, I was recently diagnosed and treated at Dana as well. I am 39. I read your post on another site and think we had the members of the same treat us. I got clean margins and went through chemo over the summer for protective measures. I am going for scans every 3 months and am almost at the 1 year mark. How are you doing? Jo Josephine Emma Thu, 01 Feb 2007 00:00:00 GMT I had cancer in 1996, had lumpectomy and 5 weeks radiation. In July 2006 diagnosed with radiation inducted angiosarcoma of same breast. Sept 2006 had simple mastectomy followed by very intensive chemo (last one Jan 2007). Today my visit to Cancer Clinic to see my surgeon she found a nodule on site scar. Maybe a recurrence. April 30 scheduled CT scan. What can I expect as no one at the Cancer Clinic can give me a prognosis on this rare cancer. Can you advise how you are doing. Babyboomer60 Fri, 13 Apr 2007 00:00:00 GMT  On 11/3/2005 Browning wrote:I have a close friend that was diagnosed w/Angiosarcoma in August. She is going to M.D.Anderson 11-11 and has faith and hope that they will be able to help her. She had breast cancer 5 yrs. ago; a lumpectomy was performed followed by radiation. This spring she noticed a "bruise" on the same breast; tests/diagnosis said it was Angiosarcoma caused by the radiation she had. A mastectomy was performed and into 7 wks of recuperation she noticed a lump by the scar. She traveled to LA and UCLA and a dr. there said "no more radiation!" She then followed through by calling M.D.Anderson and sending them all her records and tests. I am confident she is following the right path to recovery; and strengthened to hear other stories re Anderson, treatment and recovery. Thank You.Can you tell me the result from going to MD Anderson.  My Mom has been through the same course and we are thinking of going.  What was here treatment course and outcome?   DaveyJean Mon, 16 Jul 2007 00:00:00 GMT  On 6/15/2005 Mcchris wrote:My sister was diagnosed with primary angiosarcoma of the breast 4 years ago and received excellent (yet aggressive treatment) from MD Anderson in Texas. They are considered one of the experts in the field for this type of cancer. She had amazing response to the chemo and radiation which destroyed most of the tumor. She was on interferon for a year after treatment with no reoccurence, but the cancer was eventually found to have spread to her ovary (which has also been successfully treated with additional chemo) We are blessed that her last CATscan was clear! She has an amazing positive attitude and a strong faith, which I believe along with the great care from MD Anderson has provided her with a cure. It was a scary time for our entire family, but she is living proof that miracles do happen. If anyone needs specifics on treatment or advice, please feel free to write. God Bless!Mcchris, thank you for your message. My mother was diagnosed with breast angiosarcoma last week and went through mastectomy yesterday... we are based in Germany but would like to get a second opinion, of course. Is MD Anderson the best place in your opinion? Who is the angiosarcoma specialist that you recommend? I am strongly considering taking my mom there... fact is that this cancer is rare and if there are specialists who have more experience, it means a lot, i assume. Please help and i thank you very much in advance. In case needed, my email: --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- and mobile phone: --Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--  (any time)... thank you!  George_ Thu, 01 Nov 2007 00:00:00 GMT  On 11/29/2002 elaine r. wrote:I would like to know if there is anyone who has been or is being treated for angiosarcoma of the breast I was operated a week ago. A simple mastecomy. I would appreciate the experience of anyone with this type of cancer because I was told it was very rare.Hello,Let me start by saying that I will be praying for you.  My grandmother has angiocarcoma and it has progressed to what we believe is the final stage.  However, as you know, there is very little info about the disease.  My grandmother was diagnosed in June and the carcomas spread rapidly. This past friday she fell and was taken to the hospital. As of last night she was hardly lucid and the doctors concern was that this was a symptom of the disease rather than pain meds or the fall.  Unfortunately, I cannot find out much on what to expect either.  I can offer some advice that has helped my grandmother to stay as comfortable as possible and explain the progression (in laymen terms.)   If you come across anything that might be helpful I would greatly appreciate  it if you could share that with me.  We need to get this disease the recognition it deserves so that we can start fighting it!!!   poofay Thu, 01 Nov 2007 00:00:00 GMT Hello McCris,I am writing to you to let you know that I sent you a private message. Thanks,Cara3 cara3 Thu, 10 Apr 2008 00:00:00 GMT Was just diagnosed with breast angiosarcoma. I am 68 yrs old, had breast cancer in 1994. At that time, had a lumpectomy and axillary dissection (11 nodes, negative) and radiation therapy. Took tamoxifen. In Feb 2006, I had what was described as a benign mass excised from my breast (left, same one that was affected in 1994).  In late January 0f 2008, I sought care for what appeared to be a large vertical bruise on the inner portion of my left breast.  The benign mass, supposedly removed in 2/2006 was not completely removed and the remaining mass appeared to me to be larger.  After two courses of antibiotics to rule out infection, I was seen by Dr. Potruch in Las Vegas who did a biopsy.  The biopsy results were inconclusive and I had breast surgery to remove the mass.  Pathology report stated that I had two high grade tumors, one 3.o cm and one 1.0 cm.  Diagnosis was breast angiosarcoma caused by irradiation.  I am currently scheduled for a radical mastectomy on 1 May.  Also have a horrible family history, my mother and maternal aunts died of breast cancer in the 60's.   I have many questions and concerns.  Since this type of cancer is so rare, how can I be sure that I am receiving the best, most knowledgeable care?  Most recommendations I see on this particular board seem to be about the MD Anderson Center.  I live in AZ and am being treated in Las Vegas.  Obviously, would go elsewhere if that would improve my chance of survival.  My primary care physician here in Bullhead City readily admits little or no knowledge and is trying to gain information.  He is scheduling me for a PET scan which I think is to see if there is metastasis.  He thinks Dr. Potruch is the "go-to guy" for breast care.  When I was told of his diagnosis on 4/14, I asked for his prognosis and he said about 50/50.  Can anyone give me any information about my doctor (Theodore Potruch, MD, FACS  at Breast Care, 2020 Goldring Ave., #208, Las Vegas, NV 89106).  What is your experience with radical mastectomy and post-surgical treatment for this type of cancer?  Dr. Potruch said he would perform my mastectomy and send me home the same day which sounds just horrific to me.  Any information I can get will be sincerely appreciated. Dianne Dianne40 Wed, 16 Apr 2008 00:00:00 GMT Hi Hope you are doing wellI was diagnosed with angiosarcoma of the breast in august 2007, coursed by radiation recieved in 1997 when i was 35.I had a mastectomy and then three munths later, more skin had to be taken from the chest wall, now i am on chemo therapy/ taxol.CAn anyone tell me what they are on, i live in england and feel my be the oncologists in the states may see more people with this disease, any feed back would tell me more as the doctors don't seem to say to much. ashlea Fri, 18 Jul 2008 00:00:00 GMT Ashlea,Iam 32 years old and was diagnosed with breast cancer in Oct. 2007.  After 6 months of treatment and a double mastectomy they said it was angiosarcoma.  That was in March 2008.  After 8 weeks of radiation, I have just been told (July 2008) that it has metastesized to my lungs and liver.  I am curious how you are handling the taxol because I am supposed to start it next week.  Have you had any evidence that Taxol is working on your tumors or did they get all your tumors out and there's nothing to watch?  About doctors...there aren't many anywhere who've seen many of these cases.  It is too rare.  I have been seen in Los Angeles, at Cedar's Sinai.  They have a sarcoma center - Dr. Forscher.  I have heard great things about MD Anderson Cancer Center in Texas and Dana Farber on the East Coast somewhere as well.     Best of Luck and Praying that your body is healed!God Bless,Monica angiomama Sat, 19 Jul 2008 00:00:00 GMT Do you know exactly which chemo drugs your sister received for her angiosarcoma?  I was misdiagnosed in October with a breast cancer, , but found out in March after chemo and double mastectomy that it was angiosarcoma.  I didn't receive the right "cocktail" of chemo drugs for angiosarcoma the first time around, and I have just been told that it has spread to my lungs and liver.  They are starting me on Taxol next week and possibly Avastin as well.  Please let me know what drugs she received as I want the same outcome as she has experienced!  I hope she is still doing well!God Bless,Monica angiomama Sat, 19 Jul 2008 00:00:00 GMT Hi Ashlea, hope you are feeling OK and handling chemo, hard to do, I'm sure.My experience, as I said earlier, was breast angiosarcoma caused by radiation I received in 1994 for a different breast cancer.My oncologist at Nevada Cancer Institute did not feel chemo was appropriate for me at this time.  I had a mastectomy on 5/1/2008 and a subsequent CT/PET fusion scan did not indicate any gross metasteses.  Therefore, my surgeon and oncologist feel that AT THIS TIME, careful monitoring is indicated but they found no basis for chemo now.  I would add that this was the second oncology opinion I received.  The first opinion was that I should start doxorurubicin at once but my surgeon strongly disagreed with that recommendation.  I may have chemo in the event I have a recurrence of this beast but at the moment, no chemo.  I will be having regular CT/PET scans and whatever other monitoring tests they feel are necessary.  I'm sorry but I'm not sure what taxol is.  If it's similar to or related to tamoxifen, I had a course of that following my 1994 cancer.   It's true that the doctors don't see many cases of this, that is also the case in the states.  My own primary care physician admitted that he'd never heard of such a thing which is why he referred me to the leading-edge breast care specialist in nearby Las Vegas.  It is very difficult (from my standpoint) to obtain information on this monster but it is because there are so few of us, I guess not enough to provide a good statistical base.  I fear that this could become a pandemic, given how many women were treated with lumpectomy/radiation for breast cancer during the past . I wish you the very best outcome, please post and keep us informed of your progress.  I am curious as to why it was necessary to do follow-up surgery after your mastectomy.  Was this a recurrence or? Hang in there!Dianne Dianne40 Sat, 19 Jul 2008 00:00:00 GMT HI dianeWell in march 2007, went to my surgoen and said there was a bruise on my breast they took biopsies and said that i hd changes of the skin, not to worry, but he didn't know how long it would take to calm down.july went back and they still said changes but they were showing signs of change so the best thing to do was to have a mastectomy, i waited 6 weeks on his advice went on holiday, lots of changes happened, so i told them  not to tell me skin changes again it was cancer, did op and than they told me that it was angiosarcoma but they thought they had got very good margins, two weeks latter i woke at 4 in the morning and the scar had burst thay said it was infection but it didnt really clear alto gether.three months later had to have chest wall wide excersion as it was still there, so then had skin graft, i had fluid build up from the beginning although they didn't admit to that until the practise nurse rang and said something had to be done, that was when they took more biopsies and got me in touch with Professor Hassan at oxford cancer research, england, he was the person that said the taxol chemo would be the best i have it once a week for three weeks and then a week off will take that for about six months.The chemo has helped as before i was having to pop fluid from my chest about four times a day, i would get  about a pint of fluid a time, not wery nice and very difficult to go out, since chemo started three months ago it no longer needs popping, and the pain is so much better only have pain when i stretch.let me know how things go with you and what treatment you have had.Many thatnks for replying hope all goes wellAshlea   ashlea Sun, 20 Jul 2008 00:00:00 GMT hi hope you sae doing well i hope wht treatment did they give you how is it going, hpe you are managing to cope wellall the very bestashlea ashlea Thu, 14 Aug 2008 00:00:00 GMT