Sarcoma Years after Radiation Therapy

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mimi791
mimi791 Member Posts: 92
edited May 2018 in Radiation Therapy - Before, During, and After

I am 8 years out from stage III A +++ cancer and I have now developed a sarcoma in my scapula and rotator cuff where I had my radiation. This is apparently a very rare late effect which hardly every happens....but lucky me. Are they any other folks out there like me with a new type of cancer? I'm too tired to be scared...I'm just sort of angry at the universe and was wondering about starting new chemo and having new surgery after all the other stuff.


Thanks,

Mimi

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  • Tara17
    Tara17 Member Posts: 386
    edited July 2017

    Hi mimi79 --sending you lots of gentle hugs. All your emotions right now are so valid. I am sorry that i dont know anything about this topic , expect to say as yousaid, that this is apparently very rare. Given that it's so rare it sounds like seeking out a second opinion at a major academic center with someone who specializes in this specific issue would be an appropriate next step as you wonder about new chemo and new surgery ? Maybe sloan kettering in New York since you live in CT? Sending healing wishes your way

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  • mimi791
    mimi791 Member Posts: 92
    edited July 2017

    Hi:

    I'm very lucky that I work at Yale, so I have excellent resources as well as access to Sloane Kettering and Dana Farber....just stunned. My cousin is a Rad Onc so the two of us were both blown out of the water. I was hoping there might be one other lovely lady out there like me to share experiences. Thank you so much for your response.

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  • Tara17
    Tara17 Member Posts: 386
    edited July 2017

    Mimi --very glad that you have resources both in terms of family with your cousin, and access to all the best places -- ! Wishing you the very best and sending healing vibes!

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  • Tara17
    Tara17 Member Posts: 386
    edited August 2017

    Hi Mimi --thinking of you , hope you have been making forward progress and making a plan to address this . Sending good vibes your way

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  • mimi791
    mimi791 Member Posts: 92
    edited August 2017

    Hi Tara:

    It took almost 2 weeks to get pathology back, but it is indeed a radiation induced sarcoma. I am having a PET scan monday, meeting with interventional radiology to re-insert a port, an echo on Wednesday and my pathology has been sent to Dana Farber for a second review. I officially have a "zebra" diagnosis and I'm not too happy. I can't do surgery because the placement of the tumor currently would be extremely difficult to remove with out at best removing my entire scapula and a worse, my arm. We did discover that I hadn't had the maximum dosage of anthracyclines when I treated for my breast cancer, so right now, more Adriamycin looks like our first drug. This is why I have to have an echo. It looks like some lucky provider is going to have a case to publish....it's localized, so the outlook is good for removal and life, but still not sure how much shoulder will remain when it's done.

    Thanks for following up and i hope if there is anyone else out there like me....they will poke their head in, but Sarcoma's account for only 1% of all cancers and this counts for only 4% of all sarcomas and it's usually in people who have had chest radiation for lung cancer who develop the sarcoma.

    Safe paths...

    Mimi

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  • Tara17
    Tara17 Member Posts: 386
    edited August 2017

    Mimi - you have every right to be not happy, be frustrated , vent - I hope you will find the support you deserve on these boards as you deal with this complication of breast cancer treatment. I am thinking of you and rooting for your success. Hoping that Adriamyicn just melts the tumor away. Are there any targeted agents that they can use . Hope your PET scan went well yesterday . Wishing you all the best with your port placement . Do keep us updated here on how things go.

    Yes its rare as you point out, but given the sheer size of these boards, if there are other women going through this, hopefully they too will find this and poke their head in. I think I have read about angiosarcoma of the breast on these boards when I was researching radiation , but have not read about other types of sarcoma on these boards In the mean time , I will keep checking in on you, sending supporting and healing vibes your way

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  • virginiab
    virginiab Member Posts: 205
    edited December 2017

    I too have been recently diagnosed with angiosarcoma, 5 years after radiation treatment of Stage 2 breast cancer. I did some research on sarcoma centers and settled on The Ohio State University as my choice. In the past two weeks I met with three doctors there: an Oncology Surgeon, a Medical Oncologist, and a Plastic Surgeon. I was impressed with all three and feel I am in good hands. They are recommending more agressive treatment than my local oncologist suggested (masstectomy). Tomorrow I start weekly paclitaxel chemo for 8 weeks, then I will probably be ready for surgery, to be followed by another 4 months of weeky chemo. The docs in Ohio are coordinating things with my doc here in Illinois, so I can do chemo here in Illinois, then go to Ohio for surgery, then get our local breast surgeon to do follow up on the drains from that surgery.

    This is a scary cancer, but I think I am in good hands. It would be good to connect with others who are dealing with angiosarcoma.


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  • mimi791
    mimi791 Member Posts: 92
    edited December 2017

    Hi Virginia:

    Welcome to a very, very small club. I ended up treating at Dana Farber in Boston. My final pathology was for a malignant peripheral nerve sheath tumor that involved most of my scapula and my rotator cuff and was deemed to be radiation induced by the team up there. I did 25 rounds more of radiation and just had surgery on 12.1.17. They took out my scapula and rotator cuff. I won't have the use of my shoulder any more, but they saved my hand and elbow and here i am typing. I wasn't a candidate for any type of reconstruction or flap because my latissimus dorsi was used for my reconstruction years ago. I go up next week to find out the results of tumor board and if i will need chemo. That is also dicey because they used anthracyclines on me in 2009 and radiation induced tumors don't respond well to much else. I also get my drain and stitches out. We shall see what happens next. Mine isn't an angio, but there aren't a lot of us out there so keep me updated!

    Mimi

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  • virginiab
    virginiab Member Posts: 205
    edited May 2018

    Hi, Mimi--

    I hope your sarcoma treatment has gone or is going well.

    I ended up doing 4 months of Paclitaxel chemo, then had a mastectomy last month. The pathology for the mastectomy showed none of the cancer that was previouslt seen. But because this is a persistent kind of cancer, we are doing two more months of the same chemo to try to prevent a recurrence.

    You are certainly in good hands at Dana Farber and I am sending good wishes your way.

    Virginia

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  • virginiab
    virginiab Member Posts: 205
    edited May 2018

    Hi, Mimi--

    I hope your sarcoma treatment has gone or is going well.

    I ended up doing 4 months of Paclitaxel chemo, then had a mastectomy last month. The pathology for the mastectomy showed none of the cancer that was previously seen. But because this is a persistent kind of cancer, we are doing two more months of the same chemo to try to prevent a recurrence.

    You are certainly in good hands at Dana Farber and I am sending good wishes your way.

    Virginia

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