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anzu2snow
anzu2snow Member Posts: 4
edited September 2020 in Stage IV/Metastatic Breast Cancer ONLY

Hi! I'm new to this forum. I was diagnosed with metastatic breast cancer in April 2020. Didn't have a cancer diagnosis before that. Still feel pretty new to everything. Mine's er+, pr+, and her2-, and IDC. Mets are widespread throughout my skeleton, and recently found out that it's spread to my skin. My mom was diagnosed with breast cancer when she was 47, and metastatic bc at 54. Hers was not as aggressive as mine is. She passed away in 2012 from an abdominal tumor not related to her bc. So, I have some experience with watching her deal with it, but it's different going through it. Plus, I'm 35, so much younger than she was even with her first diagnosis. Her mother and grandma had it as well, but later in life. One of my aunts on that side, that's still around, also had it. Oddly I've tested negative with the genetic testing they've done so far. I had some radiation, but couldn't finish the full course of treatment. I had a radical hysterectomy recently. I'm on Ibrance and arimidex. I broke my right shoulder back in March, and without the x-rays they took they wouldn't have found the mets or cancer. I've been in palliative care since April. It's difficult to do things while still recovering from the broken shoulder and other cancer stuff. They've helped me a lot.


I'm a self-published author (have 5 books out), clarinetist, love learning about other cultures, languages, horror/mystery books/shows/movies, and more. I have 2 cats and live with my parent. All of which have helped me a lot.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2020

    anzu,

    You might consider posting on the stage IV forum which is for those of us with MBC. As to the negative genetic testing, it is not surprising at all. The vast majority of breast cancers are not linked to any genetic mutations. I believe only 15-20% are genetically related. That being said, there may be undiscovered mutations out there but until they’re discovered we can’t know the link. Wishing you the best and have a look at the stage IV threads

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  • anzu2snow
    anzu2snow Member Posts: 4
    edited September 2020

    @exbrnxgrl: I wasn’t sure since there really isn’t an intro forum. I knew that IDC was part of my type and thought that could be an ok one to post to. The metastatic one is fine with me, too. Thought it could fit in either, reall. I will definitely check the other threads out in this one. They really thought I’d be positive for one of the genetic mutations because of my family history. They’re going to do another genetic test on a biopsy they have of one of the tumors to see what would work if my current meds don’t. Sounds interesting.

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  • illimae
    illimae Member Posts: 5,710
    edited September 2020

    Hi there! I was diagnosed de novo at 41, my mom and maternal aunt both had/have BC too and I was negative for genetic mutations. Next month will be 4 years since discovering a lump that appeared out of nowhere.

    Feel free to post to your thread but just so you know, there is a de novo thread and young with stage IV, if you’re interested in checking them out.

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  • KBL
    KBL Member Posts: 2,521
    edited September 2020

    I had posted in the young thread but realized Mae let you know about the de novo thread, so I deleted it.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2020

    anzu,

    You are free to post anywhere! The IDC threads feature members with all stages of IDC. Stage IV concerns and tx can be very different from earlier stages. TBH, although I have IDC it’s sometimes difficult to read posts from folks who complete tx and will most likely never have to worry too much about bc. I am thrilled for them, but that’s not my bc reality.For stage IV, the worry never goes away, you just learn to cope with it. There is no cure and most of us remain on some sort of tx until the end.

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  • scar1888
    scar1888 Member Posts: 28
    edited September 2020

    Anzu, my gosh, an accomplished author! I would love to know the names of your books! It's so hard to get out and do things with Covid going on; restaurants, movies and so forth. Are you working on another book at this time? I taught special needs fo 25 years and have always wanted to write a children's book about dog rescue! Rescuing is one of my passions but due to such tough fatigue I'm not doing much with it right now. Curious to know if you're near any positive breast cancer support groups? Here in Charlotte we have Carolina Breast Friends and such an active group in fund raising and providing all kinds of workshops, speakers, pot luck dinners, I could go on.

    What are you doing with your time? Really look forward to hearing from you and again, post anywhere you like on breast cancer.org! A super resource!

    Love,

    Lynn

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