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Young with MBC

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Comments

  • star2017
    star2017 Member Posts: 370
    edited June 2021

    thanks, micmel and buttonsmachine. i've been okay with radiation, though the fatigue feels pretty severe today. overall, pain is better, and i'm doing okay.

  • illimae
    illimae Member Posts: 5,739
    edited June 2021

    buttons and star, I know it sucks and understand how it feels when things seem to go downhill fast but I have seen many return to living through those times with new treatments. I wish you awesome luck!

  • Touched_by_an_angel86
    Touched_by_an_angel86 Member Posts: 4
    edited July 2021

    My breast cancer story started in June last year when I was diagnosed with node negative stage 2 er positive prog neg her2 neg breast cancer had mastectomy and hormone therapy I have now been told iam stage 4 as I have reacrurrence in my lymph nodes both sides and middle of chest want to connect with others for a chat and advice as iam only 35 with 4 children and I carnt let this disease win. I have also been reading though people's stories and I see people saying your not stage 4 till its in organ or bones brain but my doctor is saying iam wen my scans where clear had bone scan ct and pet scan which showed lymph nodes only.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited July 2021

    Touched_by_an_angel, I'm sorry you've found yourself here, but welcome. Have your doctors said what your treatment plan will be? It's good that you don't have organ involvement at this time. Hopefully treatment will be effective on your lymph nodes and it will get the cancer under control.

    This disease is terrible at any age, of course, but do I think it's especially sad for those of us who are supposed to be in our prime. ((Hugs))

  • aprilgirl1
    aprilgirl1 Member Posts: 800
    edited July 2021

    Touched_by_an_angel, I am sorry you are here at such a young age. Your post caught my attention because I too am stage IV with cancer spread to lymph nodes in my chest. I was dx stage IV in November of 2019 after 11 years from original dx of stage1, node negative (chemo, rads, surgery and 7 years of femara). My stage IV was found in my superclavicular nodes on the left side and many nodes in my chest - no cancer has been found in bones or organs. From what I was told, the cancer in nodes in my chest (mediastinal and hilar nodes) qualified me as stage IV. I have responded well to treatment and currently have had no evidence of disease on scans for the past year. Feel free to send me a pm if you would like to chat.

  • Touched_by_an_angel86
    Touched_by_an_angel86 Member Posts: 4
    edited July 2021

    Hi I am so worried about treatment and hope I have choose the right plan I start taxol in 2 weeks but been looking at thread on it and people say it's side effects are bad. Hope I tolarate it OK have you managed neg for long periods of time?

  • Touched_by_an_angel86
    Touched_by_an_angel86 Member Posts: 4
    edited July 2021

    Hi that's good to hear that you have no evidence of disease what treatment did you do? and how was it. Iam starting taxol in 2 weeks hate waiting I have waited 8 weeks so far just having tests waiting for results. I have read some great stories of people achieving neg for years and I so hope that's me cos now that's all I can wish for hate this cancer I don't want to be the sick mother that all other mothers feel sorry for

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited August 2021

    Hello my fellow young friends with MBC,

    I wanted to share this post that I made on social media. I hope it is okay to share this here:

    This is my friend April April Johnson Stearns. She is an incredible human that started the one magazine I discovered for women with breast cancer under 50. I bought a subscription right away and even had a few pieces I wrote in this magazine WILDFIRE. April approached me at an MBC weekend convention put on by Living Beyond Breast Cancer and told me about her work. I loved her immediately. I hope you or someone you know would benefit from this magazine too. It's a labor of love.

    From April: What you see: Wildfire issue no 32! What you don't see: the making of the Wildfire community. You don't see the nearly 1000 breast cancer survivors and thrivers I've published over the years, or the many hours spent holding space in writing workshops as these stories are born. You don't see hours holding space for each other, or the tears when another writer-turned-friend is lost to metastatic breast cancer. Nor do you see the ecstatic celebration over Zoom when a clean scan result comes back or when a challenging story is bravely crafted to sparkling clear perfection. You don't see my family supporting me in the background. You can't see the more than 5 years I've spent figuring out how to be an entrepreneur, how to be an indie publisher. You don't see my more than 9 years of navigating the rocky road of my own breast cancer survivorship along the way. And you can't see my mighty tiny team working hard to produce a gorgeous 100-page magazine every 60 days like clockwork. (Hats off to you: @monicawashere @emilypiercell @suziegee03 @journey_back_to_health @offgriddesign. ❤) All that said, here's what I want you to see:💥What I truly hope you see when you look at this pic and when you read any Wildfire issue is YOU, beautiful. Yourself reflected back through the stories, through the scars, because you're not alone. You have a place here in this community. You matter, as does making sense of what's happened to you along the way. This is YOUR community. 🔥 Grab your copy of the Community issue today. Wildfirecommunity.org/shop

    image



  • moderators
    moderators Posts: 8,633
    edited August 2021

    Thanks for sharing this Lovefromphilly! So inspirational.

  • lotusnoiramethyst
    lotusnoiramethyst Member Posts: 19
    edited November 2021

    I feel like punching my former oncologist. She told me 3 months ago I was in remission, now I have a lump on my sacrum with new oncologist telling me its my breast cancer metastasized according to my bone biopsy results. Spent $20k of my money on my former oncologist's chemo treatments. Can I sue her?

  • moth
    moth Member Posts: 3,293
    edited November 2021

    LotusNoirAmethyst, I'm sorry you find yourself here & with a mets diagnosis.

    Metastatic recurrences do happen. Unless your chemotherapy treatment was not evidence based, I don't see how you'd have a claim. Cancer can fail to respond to treatment, can return, can be invisible on scans one month and then apper on scans the next. It's just such an awful disease. What chemo did you receive?

    btw, if you only have the one bone met, you would be considered oligometastatic and there's some recent research suggesting aggressive treatment with radiation & systemic treatment might provide benefit. Maybe come join us on the bone mets thread. https://community.breastcancer.org/forum/8/topics/...


  • lotusnoiramethyst
    lotusnoiramethyst Member Posts: 19
    edited November 2021

    Thank you Moth for responding. I really hope it is oligometastatic so that the upcoming radiation treatments could zap it away (scheduled for 10 sessions). I have a PET scan this Monday so I am very nervous.

  • lotusnoiramethyst
    lotusnoiramethyst Member Posts: 19
    edited November 2021

    I want that pesky thing gone. I can't bend down, can't sit down for a few seconds, I use a cane to get around because of pain on my right leg and hip. Before opioids, I would cry sitting down to use the bathroom or wake up with jolting pain at 4AM (and cry). Could not sleep for weeks due to chronic pain. I am doing radiation because my rad oncologist said it will help with pain within two weeks or so and I am desperate for relief. I want to get off the opioids, start walking with my two legs and get back to excercising.

  • moderators
    moderators Posts: 8,633
    edited May 2022

    Hi all! We recently added a NEW Zoom meetup for those with MBC who are under 45 years of age. We'd love if you could join us on Thursdays at 1pm ET, starting May 26, 2022.Register here: https://breastcancer-org.zoom.us/meeting/register/...


  • moderators
    moderators Posts: 8,633
    edited June 2022

    Please join us for our Young with MBC Zoom meetup 1pm ET: https://breastcancer-org.zoom.us/meeting/register/...


  • moderators
    moderators Posts: 8,633
    edited September 2022

    Hi, all!

    I wanted to post on here to bring this thread to the surface for you in today's meet-up that would like to continue to chat throughout the week and not just every Thursday. Again, it was a great chat today and we are sending all the love to you all!

    - The Mods

  • moderators
    moderators Posts: 8,633
    edited September 2022

    Join us TODAY at 1pm ET for our Young WIth MBC Zoom Meetup. Register here: https://breastcancer-org.zoom.us/meeting/register/...


  • fighter00
    fighter00 Member Posts: 41

    Hi I'm new here, just diagnosed with mets with multifocal bone Mets. Waiting for bone biopsy to start treatment. I'm 33 l, one daughter, full of sadness for her. Looking for hope, inspiration. I’m very devastated

    I would like to connect with young woman with MBC. Thanks

  • lexierose
    lexierose Member Posts: 12

    I’m very devastated as I feel it’s my fault for not getting a mammogram when I noticed something.

  • vajra13
    vajra13 Member Posts: 19
    edited August 23

    Hello to all! I am uncertain if this thread is still active.

    I recently re-joined, was here 13 years ago. I find connecting with others going through the same hurdles I navigate quite uplifting and inspiring. Thank you all for sharing your stories.

    Someone mentioned how brutal this disease could be at any age, but there is an added conundrum when it afflicts someone at their prime. I couldn't agree more. I share the anguish and devastation of others who have to muster strength and solidity amidst the heart-breaking, gut-wrenching pain caused by this illness - meanwhile being a parent/mother, a wife, a student, a professional, whatever role you fulfill, or perhaps, while pursuing life endeavors and aspirations in becoming one's best self.

    I pray that hope never loses its path to reach all of your hearts - all our hearts and souls, that there would always remain an option for everyone, that we all find the cracks where the light falls through.

    Wishing everyone the very best.

    EL

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