Diagnosed with angiosarcoma in breast ,where do I fit in

Lily22
Lily22 Member Posts: 2
edited May 2018 in Young With Breast Cancer

I'm 28 years old , I was diagnosed with angiosarcoma in my breast. I just had surgery to remove my tumor a week ago, and also had a mastectomy. 

Although my cancer was in the breast I was told that it is not breast cancer. I guess I'm just worried that I will not fit in here, which is ridiculous to think that way since I'm experiencing what a breast cancer patient is also going through .

I'm also very new to discussion boards , but so far reading things that people have said has been really helpful. 

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited January 2014

    Hi Lily22, Very sorry to hear about your diagnosis. I particularly hate hearing about young women being diagnosed - it just doesn't seem fair. I don't see why you wouldn't 'fit in' here - a mastectomy is a mastectomy whether it's for breast cancer or something else. Waiting for a treatment plan is the same scary thing for all of us. So if you have found these boards to be helpful - that's great. It may be that you have some things go on with you that we can't relate to and vis-versa, but it's always that way. 

    ((hugs))

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  • JennaJMU
    JennaJMU Member Posts: 97
    edited January 2014

    Lily22, are you on Facebook?  Friend request me (Jenna Lawson-profile pic is of me and my husband sitting on a couch with our daughter on our laps). My friend has primary angiosarcoma of the breast (diagnosed at 34 in 2013) and knows a lot of people in the AS community. I will put you in touch with her!

    Jenna

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  • lisajnicholl
    lisajnicholl Member Posts: 1
    edited January 2014

    Hi Lily

    My name is Lisa I know a support group on Facebook which can help it the Angiosarcoma Cancer group there is loads of people in group in the same boat. They can answer your questions about anything. They were a great help to me when my mum was diagnosed with radiation induced angiosarcoma.

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  • mindykaye34
    mindykaye34 Member Posts: 1
    edited January 2014

    Hi Lily22!! 

    First of all, I am so sorry to hear of your recent diagnosis! I am 29 years old and was diagnosed with AS of the Breast in May 2013. Initially my tumor was around 3.2cm, but nearly doubled in size in the 3 weeks it took to be diagnosed. That put me outside of the parameters for surgery first. I had 6 rounds of AIM, which shrunk my tumor by 93% overall and of the remaining 7%, only 1-2% of the cells were viable cancer cells. I had a mastectomy at the end of October 2013 and am now following up with some "clean up or just in case chemo." As Jenna said, we have an awesome group on Facebook. It is full of angiosarcoma warriors and I can speak on behalf of everyone in the group when I say that we would love to get to know you and help you however we can. It has helped me so much. Best of luck in everything to come! And don't believe everything you read on the internet!! There are a lot of people beating the crap out of this disease every single day!! Have a great day!

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  • AbbyWesthafer
    AbbyWesthafer Member Posts: 1
    edited January 2014

    Hi Lily22! I am that 34(now 35) year old friend of Jenna's and I know the other 2 girls who just introduced themselves. You should join the facebook Angiosarcoma Cancer group on facebook. It is filled with a bunch of people who have the same type of cancer in many different areas. Mindy is my friend whom I met through this group and was also diagnosed with primary AS of the breast as well as me. You are not alone. Yes, our cancer is not the "pink" ribbon breast cancer and we make up of only 1% of the cancers in the world, but we do go through a ton of the same things as them. I was diagnosed in April 2013 (actually misdiagnosed in Sept 2012..they told me it was a benign fibroadenoma)...I had a lumpectomy first because my biopsy came back Non cancer but with vascular channels...A week after the lumpectomy it was confirmed that it was AS. I was so shocked and so sad. I turned to the internet to research this weird rare cancer and found no hope as I kept reading "poor prognosis" and horrible things. I then stumbled on the AS facebook group and met so many wonderful people who have helped me so much. Hearing that this happened to them 3, 8, 11, years ago and they are still fine gave me tons of hope. I had my mastectomy at Johns Hopkins with a breast surgeon who specializes in sarcomas on May 1st. June 10th through Aug 19th I did 12 weeks of chemo (gemzar/taxotere) and now am on the 3 month scan cycle. I had a scan in Sept and just in Dec in which both came out NED...no evidence of disease. Make sure your Dr. is a specialist in dealing with sarcomas...a bunch of Dr.s out there really have no clue what AS is so make sure you are with one who does know. You can friend me on Facebook if you'd like.. and if I can help you with any questions, please ask!! I remember when I found out that I had AS I just wanted to meet/know another person who had this same rare cancer, and now I know quite a few!! Happy to help you out!! Take care! 

    Edited by Mods to remove personally identifiable information. Please PM Abby if you'd like to share contact information for facebook or otherwise.

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  • kkmich
    kkmich Member Posts: 4
    edited January 2014

    Hi Lilly22 - I was also diagnosed with Angiosarcoma primary of the right breast at age 38. I'm 40 now and have been through the whole cycle - lumpectomy to diagnose (9 cm tumor). Mastecomy to try to get margins - including my pec major muscle. Followed by 33 rad treatments & 12 months of chemo. I just finally started my reconstruction process last month. Yay. 

    I know the ladies above and also highly encourage you to join our FB group. You can find the link off of cureasc.org. Or search FB for Angiosarcoma Cancer. BTW I feel the same when posting on this site - my doc said "sorry but you can't own the pink, it's not BC". That's great but geez. How do you find support then??? We're here if/when you need us.  Oh & it should be noted that a male member of our clan found you on here but was too shy to post on a BC site. Feel free to tease him mercilessly when you "meet" him. Name of Ryan Humphrey. :)

    It's never fun to say welcome to a new person - cause you just got an awful diagnosis. But welcome. 

    Kim

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  • wenblown
    wenblown Member Posts: 25
    edited January 2014

    hi: I do know a few of the women who posted as I am part of the angiosarcoma group on Facebook. I was diagnosed with AS of the breast in July 2013. I am an 8 year breast cancer survivor but just diagnosed with this new cancer this year . I have been doing chemo for 5 months and will be doing it for another 6-7 months prior to surgery. I see a sarcoma specialist in Houston Texas; Dr. Ravi . I live in Kansas and do treatments at KU, but DR Ravi runs my case. We visit him every six weeks. Consider joining the AS group. They have a wealth of knowledge. I am a very private person so I have not felt a part of the group, but I know most love the group. If there is anything you need; a question, someone to cry with or just to rant: please know I am happy to listen!! I am older than you but have dealt with cancer, chemo, bi lat mastectomy radiation surgeries etc... For 8 years now and I started at 37 years old! Lots of hugs to you !!! Wendy 

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  • Westiefriend17
    Westiefriend17 Member Posts: 1
    edited January 2014

    Hello, just wanted to check in quickly and say hello.  I had invasive lobular breast cancer in 2007; I was diagnosed

    with radiation induced angiosarcoma on my right chest wall in Feb. of 2012.  My AS was caused by

    the radiation I had for my breast cancer.  I had a double mastectomy in 2007.  I had surgery in Feb.

    of 2013 to remove the AS tumor and parts of surrounding ribs, sternum and other tissue/fat in the

    area.  I am on the Angiosarcoma Awareness, Inc. Facebook page and have found it to be a

    Godsend.  I hope you join us there!  I am also on some other sites such as this one.  We can

    never have too much support! 

    Sara

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  • Eileent54
    Eileent54 Member Posts: 1
    edited January 2014

    my daughter had primary AS of the Breast. the AS Facebook page and www.cureasc.org can't be beat.  Wonderful, caring folks with great info. 

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  • MLG41
    MLG41 Member Posts: 1
    edited January 2014

    Hi everyone 

    So happy to find you all. I've been crazily and ag all advice searching the Internet since my DX on Dec 27. I was DX w primary AS of the left breast.  I'm 41 yrs old. I've spent the last few weeks absorbing the news and prepping for my surgery this Friday (mastectomy) and just finished w my PET scan today.  plan to date is 12 weeks of chemo w poss 5 wks of radiation.  As all of you have stated I've been so down after reviewing the info on line and not knowing anyone else w this DX so happy to hear all of your stories. Thank you. Did join the FB group at your urging. 

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  • wyo
    wyo Member Posts: 541
    edited January 2014

    mlg- glad you found this site and this group.  I am not in the angiosarcoma group but welcome you to the breastcancer.org family.  I think there is someone who knows something about just about anything that might come up- I find that reassuring and wonderful. One thing they always say is "stay away from Dr. Google"  those wonderful search engines can bring up all sorts of information some good and some not helpful or even accurate.  

    Best of luck on your surgery on friday- stay out in front of your pain after surgery and make sure everyone is washing their hands!! (its the nurse in me can't help it)

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  • Susa195127
    Susa195127 Member Posts: 1
    edited January 2014

    Hi lilly,

    I was diagnosed with primary breast angiosarcoma in july 2013, age 39. I also have the same feeling about not fitting anywhere. It is not breast cancer, but i've had a mastectomy... But the diagnosis, treatments, risk factors, etc are different from those of BC. So i understand you very very well!

    I'll be happy to hear from you,

    Susa (from Spain)

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  • Lovepugs
    Lovepugs Member Posts: 1
    edited May 2018

    hello my name is Tasha and i am 32 yrs old and have just been diagnosed with primary angiosarcoma. i have to have a mastectomy and i am terrified. would like to hear from others.

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  • pawstucket
    pawstucket Member Posts: 5
    edited May 2018

    Check out The Angiosarcoma Awareness Group on Facebook

    Paws

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