Phyllis tumor recurring

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Gradycat
Gradycat Member Posts: 1
edited July 2018 in Less Common Types of Breast Cancer

I had my first Phyllodes tumor in 2009 and a lumpectomy with wide margins shortly after.It was benign and never gave me problems after surgery. The tumor came back again in 2012. It grew quickly and was dense but also benign. Against Dr. Orders I chose another wide margin lumpectomy and was told by oncologist and surgeon they felt confident the surgery was succesful. It came back in 2016 malignant, fast growing. I had double mastectomy and partial reconstruction on the good breast ,right side. One week after this surgery my cancer team said more surgery would need to be done to the left side with lymph node removal. One month later I was back in for a 4th srgery. This was followed by 6 weeks of radiation and a boost for a seventh week. I suffered thru 2nd degree burns a cut ostebracial nerve and no tissue or skin for any reconstruction. This has dramaticaticall altered my life, with level 7 to 8 pain almost daily for 2years. My surgeon has told me that my GO is the one to pick up where she left off. With regard to any more PT or pain management. Im now 68 , this has been my life for the past nine years. Anyone out there diagnosed with Phyllis tumor be very careful whom you choose as your Dr and surgeon. Do your research. If I had the info I do now of recurring Phyllodess tumors a mastectomy would have been the better option.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2018

    Dear Gradycat,

    Welcome to the community. We are so sorry that you have been through so much and continue to have such pain. We are glad that you reached out here. We hope you will stay active and connected. We are wondering if you are referring to a Phyllodes tumor and if so here is a page to a number of links and resources on that topic. There are some other threads devoted to this topic as well. Let us know if there is anything we can do to assist you in navigating the boards. The Mods

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  • sm627
    sm627 Member Posts: 298
    edited July 2018

    Dear Gradycat,

    My heart goes out to you and everything you have been through over the years dealing with your Phyllodes. You have been through such a stressful and horrible frustrating ordeal. How are you doing and feeling now?

    Thank you for the advice about having a mastectomy for preventing the phyllodes tumor from coming back again. I have talked to my breast surgeon and told her that if I happen to get a phyllodes in my left breast I want a mastectomy just like she did for my right one. Phyllodes should be taken very seriously. They are not to be messed around with. I think they should be nick named the weed tumor since they seem to grow back so fast.

    Sending you good wishes and hugs!

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  • Boyd748
    Boyd748 Member Posts: 149
    edited July 2018

    thanks for the insight. I had a lumpectomy a couple weeks ago to remove what my breast surgeon who actually is a surgical oncologist thought was a harmless fibroadenoma. She removed it and didn't worry about getting extra. She called me about a week after surgery and told me it's a phyllodes tumor but completely benign and nothing to worry about. She said it may grow back so we have to keep an eye on it and if it did next time she would have to remove more. What I read seems to be worrysome so I'm going to discuss masectomy. It's not like I haven't had any other problems. I've had two previous lumpectomies on the left, one was size of peach, 2 needle biopsies and a stereotactic biopsy for microcalcifications that were concerning in 2016 but they were only usual hyperplasia and nothing to worry about according tom my surgeon. Any tips for convincing my surgeon to go ahead and do a preventative masectomy on my left breast?

    Thanks


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