Secondary Angiosarcoma of the Breast
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I have agonized over whether to post this or not because I in no way wish to scare the daylights out of you who are in radiation treatment or have finished. I do think this is something that rad. onc. need to address as I was never told this could happen, because they do not expect it to happen.
See my original dx. at the bottom of this post.
Recently (about 5 wks. ago) I had a small red spot come up on my breast. It looked a bit like a cherry angianoma , no pain, no burning, itching, swelling, not warm to the touch. I had an appt. for my annual mammogram and check up so I waited 2 wks. My dr. said right away he would excise it and sent it to the lab. The biopsy was May 1st -- 3 wks. later.
The dx. is NOT a recurrence of the breast cancer, however, it is Secondary Angiosarcoma due to Radiation. This is VERY RARE, but being seen more often as more women have breast sparing surgery w/ rads.
At this point I don't know the grade or much else. At the very least the dr. says a wider excision is in order since there was a little at the border of the biopsy. It is being referred to the tumor board and I will know Friday May 9th my treatment options. Of course I've tried to research it but there is not a lot out there about secondary .... a lot about primary but they are telling me that is certainly not my case.... It is from the radiation.
I'm thinking at this point that total mast. is in order.... I pray not chemo because I am the queen of allergies and allergic to most meds!
Let me say this....I still am not sorry for my original treatment decisions. At the time that was what was deemed best for me. If I had not had the radiation I might have had a recurrence of the breast cancer. I am 10 yrs. out. If I had had a mastectomy with no rads .... who's to know if that might not have spread, also.
So, be vigilent about checking your breasts for any new spots of any kind and get to the dr. pronto. They are telling me that the 5 wks. is pretty quick....
Most reading this don't "know" me.... but I am a believer and have been for many years. I do not know why God "allowed" this. He DID NOT CAUSE IT but I know He will see me through it.
I would appreciate any knowledgeable input.
JO-5
Comments
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My mother was diagnosed with secondary breast angiosarcoma over 4 years ago and treated quickly, and she has not had a recurrence.
PLEASE - BEFORE you do anything further, be sure to discuss your options with a VERY EXPERIENCED angiosarcoma expert. Most oncologists have never seen a case of angiosarcoma and do not know how best to try to treat it. This is a very aggressive cancer and delayed or wrong treatment will worsen your outcome. There are no guarantees that the expert can stop or slow this down, but for the best chances possible, please make arrangements to see one.
One of the most knowledgeable oncologists for this cancer is Dr. Vinod Ravi at MD Anderson Sarcoma Center in Houston. If you cannot travel to Houston for some reason, at least find a local sarcoma expert. If there is not one near you, please have your oncologist contact Dr. Ravi for advice ASAP. As you know, this is a very rapidly growing cancer and it's extremely important to work with the right doctor(s) as soon as possible.
There is a group focused on angiosarcoma that lists resources: www.cureasc.org
They also have a discussion/support group on Facebook: "AngioSarcoma Cancer" with over 1500 members. They are your best resource for questions and answers.
Although not everyone has had my mother's success, there are long-time survivors out there. One of the keys though is finding and working with a sarcoma team (sarcoma oncologist, sarcoma surgeon, etc.) I wish the best with your treatments.
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Hi,
I agree with everything the previous post says. In addition, my mom had secondary sarcoma of the breast almost 3 years ago. She is NED (No evidence of disease) and doing great. It is definitely very important to discuss the treatment options with a specialist. My mom is in San Francisco and had all her treatment here. First, her breast was removed so that clear margins could be achieved. Next, she did about 5 months of weekly chemo at CPMC in SF, then 4 weeks of twice daily targeted radiation at Stanford. Not everyone agrees on the order of things or whether radiation should be part of the regimen, so do not worry. In the end, you just have to decide. Doctors disagree, people disagree, so talk to as many experts as you can and do what you think sounds the best for you.
You got this!
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I do not mean to scare you or question your decision, but sarcomas are VERY rare and require a specialist for EVERY case, EVERY time.
My mother's local tumor board also recommended immediate radical mastectomy and then "cross your fingers." That wasn't good enough for me. When she was seen at MD Anderson a couple of weeks after that, the SARCOMA EXPERTS there said that the recommendation by the first tumor board was OPPOSITE of what MD Anderson suggested based on their EXPERT opinion (chemo first, then surgery, then chemo again.)
If your local team has not treated the same number of people as the SARCOMA EXPERTS, please at least ASK for a second opinion before your surgery. Time is not on your side with cancer. You may not have time to seek the advice of a SARCOMA EXPERT after the surgery if/when the cancer develops again around your surgical site, which frequently happens to angiosarcoma patients.
Please do NOT just trust any medical "expert" to offer you guidance. Just because they have impressive credentials doesn't mean they know enough about treating this very aggressive cancer. Those of us who have dealt with angiosarcoma and the patients and their families who've fought this know how serious this is. Some patients have regrets for not having immediately gone to SARCOMA EXPERTS - their own doctors just didn't know enough to guide them properly even though they claimed that they did.
I truly hope that whatever your choice is that you end up being able to contain/manage this cancer. It can metastaticize quickly (even WITH clear margins) because it lines the blood vessels.
Please ask the group on Facebook their opinion if you want to confirm what I'm suggesting is true.
I do wish you the best with this...
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Hi Jo. I can relate exactly. I had breast cancer, lumpectomy, followed by radiation treatments. 10 years later I noticed bruising on the same breast - first doctors thought it was a breast infection - so I wasted time until I was finally sent for a biopsy - the surgeon who saw the biopsy results recognized right away that it was angiosarcoma - his third case in 30 years of practice - so I was then scheduled for a radical mastectomy - the tumor was small but had started to spread in the area - I then saw the sarcoma specialists at Oregon's OHSU. At that time no further treatment was advised because it was certain that all the bad 'stuff' had been excised. However, I was given a prognosis of 1 1/2 to 2 1/2 years. I was checked every three months, then six months and had just been given word that I could go a year before I went back to the sarcoma clinic. I went 5 1/2. years NED! In January I noticed a small - what looked like a freckle - in the area of the mastectomy scar - went to the same surgeon, he did a biopsy, it was examined and then at the same time removed the beginning of a growing tumor and was able to get wide, clear margins, going into the chest wall. I again visited the sarcoma doctors at OHSU and they did not see reason for any further treatment. I have had many, many scans of my entire body over the past years, regularly. I am confident with the way my doctors have treated my angiosarcoma. I am totally vigilant and when a spot appears that I don't like, I see the doctors. The OHSU drs are now back to following me again regularly......So, good luck to you and trust your instincts and your doctors - and yes - see sarcoma specialists, definitely. They are interested in this cancer - and there are so many new ways to approach it now that were not there five or six years ago. I have found it gets on my nerves when it is getting to be time to visit the doctors again - I guess it is a dread of perhaps learning what I don't want to hear - but I also know that my life is in God's hands and in His timetable - so I really try to not worry and just trust in Him - Wish you all the best, and please know that you are not alone - there are many of us sharing what you are going through. God bless you. Sally0 -
Dear Jo-5 You are being lovingly stalked by and Anglosarcoma Awareness group. You can find us on Facebook or go to the site cureasa.org. here you will find survivors and warriors with the best information and support on the web. Come over and check us out.♡
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Thank you for sharing your decision.
Please note that the correct website for the Angiosarcoma Awareness site is: www.cureacs.org (not www.cureasa.org)
Did you find the Liddy Shriver site? They offer support for all sarcomas, not just angiosarcoma. They have a very good article online about why being treated by experts in sarcoma is so important:http://sarcomahelp.org/sarcoma-centers.html
I wish you the best with your decisions and your treatment. Everyone has their own preferences and their choices are honored.
I wish there was this much wealth of accumulated knowledge and sharing when my mother was diagnosed first diagnosed. It was very scary knowing that she could have been one who progressed and died quickly. I'm grateful that she has not had a recurrence and hope that you have the same outcome.
Take care...
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i am so happy and relieved for you JO-55!!! great news!!!
edited to say that those links provided above by that queen lady, is basically just an alternate search page that BOTH links go to and i consider that spam. it is not an actually website.
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but if you do click on Queen's name, if you go to her 1st post, and click on that link, THAT one works!
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Thank you, JO-5. I mainly looked at your original post, because i had not heard of it, and i do like to be informed. But if i did see a suspicious spot, i would certainly want it checked out! I am glad you are good to go!
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JO-5: I'm pleased to hear your surgery went well, and I truly hope things work out well for you. I do not like to "scare people to death." I shared the information that I have based on what I have personally experienced caring for someone with secondary breast angiosarcoma over the past four (now, almost five) years and getting to know scores of angiosarcoma patients and their families, both those with the same diagnosis as yours well as those battling AS arising from other parts of their bodies.
Kathe: It's unfortunate (and frankly insulting) that you assumed and publicly stated that my posting was "spam." I was not the one who posted the incorrect web address, and I believe it was an honest error by the person who did post it incorrectly. We are all just trying to help. The sites I referenced are legitimate sources of up-to-date (not old, outdated) information, as well as group support from those currently dealing with this very aggressive cancer.
I have worked in the medical field for my entire career and currently in the oncology area. I have quite a bit of experience with diagnosing, treating, and managing cancer and am very familiar with the healthcare system including how tumor boards and individual doctors reach their treatment decisions. If you feel my advice is "alarmist" and choose to dismiss it because of that, I'm dismayed. This is a very aggressive, and yes, scary cancer.
JO-5 is correct that angiosarcoma is extremely rare. Sarcomas represent only 1% of all cancers, and angiosarcoma represents only 1% of all sarcomas. Although my mother's angiosarcoma was caused by the radiation she received to treat her initial breast cancer, I still support women with certain types of breast cancer be treated with radiation; the benefit outweighs the risk. However, I would like to see doctors more strongly recommend that their patients watch for signs of angiosarcoma in the future since it tends to first appear 5-12 years after radiation treatment.
Each patient has the right to pursue the treatment that they feel is the best for them and I honor those decisions. I and others who have dealt with this cancer have learned that inexperienced doctors have caused more harm than good because THEY rely on outdated information. I stand by my earlier recommendation that patients with this diagnosis work only with the most experienced sarcoma oncologists and sarcoma surgeons who have seen and treated a lot of cases of angiosarcoma.
JO-5: Again, I do wish you the best outcome and do not intend to make this an adversarial discussion.
Peace to all of you...
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QUEEN OF SWORDS:.... i did not mean to upset you, and i wasnt calling your POSTS spam, only the fact that the cureasc links had been hacked, and did not bring me to the website you suggested. But, when i went to your very first post, THAT LINK WORKED. so, that is all i am saying.And sorry, but those links ARE your post.
Did not mean to cause any trouble, i am so glad that JO-5 is okay, and seemingly great hands,to me anyway. But as a voracious reader, the subtext of your message IS troubling to me. I would be extremely scared, and not trusting my doctors,generallyhalf out of my mind. not a good place to be. heck, i am already scared, and have looked at my breast trying to memorize what spots are already there, that the drs have already seen, just to know if a new one comes. I DO agree, new patients should be told. I was told, other cancers could occur, just not when or where, or what type. I see, queen that it is your mother. And the drs give us a brief and unscary as possible idea as to what could happen and they do stress as much as possible to you, how absolutely necessary it is, at least in my case. I could have refused, but believe me, you do want to do every thing possible, if you have decided to keep a slightly altered breast. And, not having cancer yourself, maybe you don't understand how awful and scary it is to make desciousons about what not or what to do.
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Thank you JO-5. I do believe with your faith, and your good doctors that you are in extremely good hands. And maybe sally ruth just doesnt come to BCO that often,but i do hope she does respond to your PM soon, because there is nothing like talking to someone who has experienced the very same thing. Wishing you all the best in future.
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so nice to meet you!
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JO-5 - I haven't been affected by angiosarcoma, but I wanted to add my prayers for a benign report. I think it's great that you continue to post about your experience with this rare condition to educate and support others who come along.
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JO-5 - Thanks for keeping us updated.
Hoping and praying for best results.
Hugs
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I'm new to this problem and to this board. Yesterday I had a CT scan to see if my Angiosarcoma of the Breast had metastasized. I've had it for a while, have been in denial, and finally went to the doctor. Last week the Surgeon did a biopsy and came up with the diagnosis, that it was caused by radiation from my 2008 lumpectomy and radiation therapy. My husband and I were really worried that it had spread but today got the results and it has not. The doctors say now I'll get the simple mastectomy without any followup radiation or chemo.
JO-5, I'm so sorry I signed up with a user name so similar to yours, I must have read your posts and thought that was a good name! I thought it was unique when I signed up for JQ5.
At the beginning of the year I caught four colds in a row plus had a lot of stress with my only daughter's wedding, and ended up seeing the pulmonologist. As a result I had to start taking medicine just to breathe every day and I found Buteyko breath training on Youtube. It's lucky for me because with that I've been able to get myself healthier with that and serious Macrobiotics. I've been playing around with Macrobiotics for years ever since my Dad was sick with cancer, but was never dedicated before like I am now, that's for sure. Anyway, that's the plan, work on being healthier, get the Mastectomy, and be thankful. Speaking of being thankful, we're new to Kelsey Seybold and we just love them. They're so well organized and everyone we have met has been very kind. They're really outstanding.
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Hi JO-5. I changed my name to JACKIE88, sorry it's been a while since I posted, I forgot how to get here! Yes I'm old I guess.
It has been here for about 18 months. At first it was a small bruise, about the size of a postage stamp, then it became larger, then became hard and red with black blood blister looking areas. Shame on me for not following up sooner, but I was really in denial. One day I was on the internet and saw a picture on the right side that identified a blood blister as cancer. So, soon after that I did get it checked out.
I think I'm pretty lucky it hasn't spread. Maybe I have the nice kind.
I would love to PM, but I don't know how. If that's a setting, I'll go and set that up. If not, let me know what to do to get it going.
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I am a bit concerned about my radiated breast. I had lumpectomy and my radiation treatment ended ten month ago. I awoke yesterday with a very discolored breast, all mottled and dark pink. Also purple bruises around the perimeter or breast. Look like hickies...not that I have ever had any, lol.
Anyway I wondered if that sounded familiar.0 -
thank you Jo. I saw breast surgeon this morning. She thinks it came on too quickly to be angio.
She sent me over for mammo and U/S. Radiologist said they looked good but she was concerned about IBC. She said if antibiotics dont ckear it up I shoukd have a biopsy.
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I saw my MO today. She said that she doesnt think it is angio or IBC. She said it looks to her like I have lymphadema in my breast and it has burst blood vessels. She has not seen ine that covered so much if the breast befire. But she has seen it in another patient ended up getting a mastectomy.
I am still on antibiotics in case the LE caused an infection. But I am also booked in at the LE clinic (have to wait a month). If it doesn't clear up they will do a biopsy.
Huge sigh of relief!!! Anything but cancer please and thank you!!!
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I may have bumped it. But I have had a couple of hot baths lately maybe that triggered it. I disnt submerge fully or anything. Just trying to figure it out. It is heavier than usual, and I have noticed an increase in size.
i wont rush into anything, dont worry.
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Thank you Jo. The more I think about it the more I realize it was very likely a result of a hot bath. I have had kidney stones and a pinched nerve in my back and have had hot baths and heating pad to help with that. Never occurred to me that I could start LE. The thought of living without hot baths saddens me. Bur I will have to accept it.
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Thanks for coming back to update us. I hope you come back in another 5 years to tell us you have enjoyed another quiet surgery free 5 years
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