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ellientta
ellientta Member Posts: 12
edited April 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hello! I don't know if this is the right forum to post this greeting. There's probably a better place to say hello. (Moderators: You are welcome to move this post to a better place). I was just diagnosed today with Stage IV De Novo Breast Cancer. I'm 39 years old. I'm sure I'll have more to say later, but I really just wanted to say hello. I was supposed to start chemo for a stage III diagnosis on Monday, but the bone scan found metastasis. I was told that there was almost no chance of metastasis. I'm in shock. I don't know what to expect. I'm grieving the loss of all the places I would have seen and people I would have known and growing old with my husband. I'm scared for my stepdaughter who just started high school. My mom died when I was a child. I watched her die from a fatal disease. I can't believe I'm doing that to my own child. I'm so worried about my husband and how much stress this is putting on him. And telling my father today was the hardest thing I have had to do so far. I read that having a survival goal was important. My first survival goal is to make it to my first sabbatical (2020-2021). My second survival goal is to make it to my child's high school graduation (June 2022). I am hoping those are realistic. My long term survival goal is to outlive my father. I don't want him to have to watch me die.

I plan to be on these boards as much as possible. I'm meeting with my oncologist to change my treatment plan on Monday. He told me I have years, not months to live. So far I am asymptomatic. I would have told you last month I was in perfect health. I'm trying to be hopeful while also being realistic. I'm trying to accept my diagnosis while also fighting to survive.

Annoyingly, I'm also currently in the hospital. I had a chemo port installed on Tuesday. I ended up in the ER that night with a collapsed lung. My lung was punctured during the port surgery. They put in a chest tube. The chest tube either moved or was in the wrong place, so the lung collapsed again the next day. They removed the original chest tube and put in a new one. I'm doing much better now but I've probably got another 2-3 days in the hospital.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2019

    So sorry to hear, sounds scary I hope things continue to get better.

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited April 2019

    oh my heart is with you. All your fearful thoughts I have and had just in the last 2 weeks. I was diagnosed with Metastatic breast cancer to the liver 2 weeks ago. Please feel free to PM me any time. (((((Hugs))))))

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  • illimae
    illimae Member Posts: 5,710
    edited April 2019

    ellientta, you are in the worst of it right now but it does get better. I was stage IV de novo too at 41, a total shock and scary but I’ve learned so much here, seen so many live for several years and found chemo/treatments a lot easier than I expected. Goals are great, start planning things for after chemo, many things are bittersweet but there are still good times to be had 😀

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  • ellientta
    ellientta Member Posts: 12
    edited April 2019

    Thank you, all! NicoleRod - I would love to talk more. I'm so sorry about your diagnosis. Thank you, illimae , for helping me see beyond this moment. I'm so sorry you are both in this club, but I am glad to have met you.

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  • Christene502
    Christene502 Member Posts: 115
    edited April 2019

    ellientta

    I have MBC -- let me tell you it's not an easy thing to hear.

    10/17 - I had my reg mammo/sono, my Dr said to call a breast surgeon immediately I did. Gave him all my records. He ordered me to get a port in asap. and immediately sent me to an oncologist. The oncologist sent me for a MRI, bone scan and PT CT Scan and set up a date for Chemo... Had surgery - port in my chest... Went for my tests... The day I was suppose to start Chemo is when the Oncologist Read the test results... He said that I have metastasis breast cancer and can not do chemo... I said why didn't you read the reports earlier I wouldn't have had the port put in... He apologized and said he made a big mistake. But it might be used down the road.. If it isn't blocked by then... He told me at that time no surgery. Drs have a hard time drawing blood at out this useless port, had a test on it... Flapper is stuck...

    My oncologist put me Ibrance and letrozole and monitors me monthly.. Six months later had all the test again, it showed the tumors shrunk... Both my Doctors were extremely pleased. Told to wait again and repeat the tests, No new tumors one they can't even find.

    In Feb repeat again all tests -- MRI showed a tiny new tumor in my left and a new nodule in my right... Oncologist and Breast Surgeon both agreed it was time to get out the primary tumors.. Have a mastectomy. I asked will this cure me? No of course not. ...Dr wants only to take the left breast - I ordered him to take both.... Drs said I will live a long life... Oncologist said 20 yrs or more... He is giving me great hope... I have the cancer in my right hip Femur, chest wall, lymph nodes.

    Surgery is all set for May 6th.

    If you need just to talk PM


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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited April 2019

    Ellientta- Do not get too far ahead projecting your imminient demise, with so many treatments you can expect to live a long time with a mostly normal quality of life, and the further you can go, the more likely you will be to be around for some kind of breakthrough immunotherapy game-changer. Until proven otherwise, I assume that I won't actually die of this diease.

    Also, how extensive are your bone mets? If there are only mets in a handful of places, it is considered oligometastatic and they radiate those spots along with the systemic treatment, and quite a few of those cases can be cured nowadays. But even widespread mets can respond totally for years without any new symptoms developing..

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  • illimae
    illimae Member Posts: 5,710
    edited April 2019

    Feel free to reach out, there are so many questions in the beginning.


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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited April 2019

    ellie, sorry to read of your diagnosis. As others have said, it's always hard with this at the beginning. There's so much information to cram into our heads and a different lifeperspective to wrap our heads around.

    Please know there are women on this forum with mbc who have been around for awhile. I found a lump in my breast in December of 2010 and several weeks later learned it was bc metastasized to several areas of the bone. Who knows how long it had been there before it was discovered, and now look at the date, 2019. I am still doing pretty well. It is possible to live a reasonable good day to day life once treatment is in place. And many of us view this as living with mbc, not dying from it. I've had some of the best times of my life since being diagnosed, not because of mbc, but in spite of it.

    It is good that you found this forum, it is great for support, insight and information.

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  • illimae
    illimae Member Posts: 5,710
    edited April 2019

    I always love the “living with, not dying from” perspective Divine 😀

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  • JCSLibrarian
    JCSLibrarian Member Posts: 564
    edited April 2019

    Hello, Ellientta! Nice to meet you. Sorry it is here. I was diagnosed last October after finding the breast tumor myself. The diagnosis progression was very similar to yours. My MO even told me that he is not a fan of ports, but it was put in prior to the MBC diagnosis. He is against any surgery or radiation of the primary tumor. Even though the surgeon is willing since the tumor has reduced in size by 90% with chemo. We are still in negotiation about this issue! Certain parts of this are not fun, but the support from family, friends, people on this forum and even the chemo nurses is wonderful! Do not troll the Internet too much. Get a second opinion if you need it. I have learned a great deal from the people on these forums about cancer treatments and life in general. I am a good bit older than you, but plan on living a long time yet. I call myself a healthy person that happens to have cancer. Good luck!

    Check back often and let us know if you need anything

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited April 2019

    hi Ellientta!

    So sorry you have joined us :( but you have found an incredibly supportive and amazing community on this site.

    I was diagnosed stage 4 de novo with bone mets on my 40th bday, a little over 2 years ago. It was scary as all hell. Do what you need to do to get fresh air, laugh, cry, vent, get the support you need in whatever forms it comes in: family, doctors, therapists, shamans, yoga teachers, friends, support groups, medications, animals...

    I thought I was going to die quickly after receiving my diagnosis but turns out, I haven’t miss one day of work (aside from having a flu-like bug one week) and I have traveled extensively and actually surprisingly been having a great life!

    We are here for you. Please feel free to reach out as much as you need.

    Big hugs!!

    Philly

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  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,284
    edited April 2019

    Ellientta, welcome! I’m 4 years in with metastatic breast cancer. The beginning is the worst, the shock and the fear are overwhelming. Once you get your treatment plan and begin, things settle down some. There is always someone here to listen and give advice. I always say that you will learn more here then any doctor could ever tell you.

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  • ellientta
    ellientta Member Posts: 12
    edited April 2019

    Thank you all. You are making some of the most difficult days of my life so much better. I feel so much less alone and so much more surrounded by a community. I have more hope that I will be able to handle this after reading your words of encouragement and your stories.

    Lynnwood1960 : Thank you so much. Your words are so comforting to me. And I love hearing how much I have to learn from these boards. I have already learned so much.

    IchangedMyName : I dream of continuing to work. I am so glad you have been able to continue working. And I would love hearing about your travels! What a way to turn 40. Most of my friends are turning 40 right now or just turned 40. Everyone is talking about what they want the next decade of their life to look like. And at the moment I can't imagine being alive in a decade (this board is giving me some hope). I imagine a diagnosis on your birthday must have been particularly intense.

    JCSLibrarian: I love your philosophy of being healthy person who happens to have cancer. I'm going to try to emulate it. I hope you are successful convincing your oncologist about your primary tumor.

    DivineMrsM and illimae: I'm going to have a make a bulletin board of all the helpful advice and framing. I need to work on telling people I am living with cancer rather than dying from cancer.

    Cure-ious: I should find out tomorrow how extensive my bone mets are. The hospital would not give me the report and were vague in sharing the details. I know my oncologist will show me all the images and the full report and explain everything to me. My understanding is that there were four ribs involved (all next to one another), a spot on the hip, and maybe a spot on the sternum. The oncologist did tell me that I would get one treatment for extensive metastasis and another one for oligometastatic. This seems like something in between, so I don't know how he'll respond. I'm also not sure how big the spots are. They didn't show up on the Chest Xrays or the Chest CT scans. Also, I love your sentiment, "Until proven otherwise, I assume that I won't actually die of this disease." I don't know how to believe that yet, but I would love to get to that point.

    Christene50…: It is so helpful to hear the details of your story. Good luck with your surgery. I'll keep my fingers crossed for success and easy healing that day for you. I'm sorry I'm not the only one who got a port put in prematurely.

    Does anyone have kids? How are your kids handling it? My 15 year old knew that my cancer was stage 3. My mother-in-law had a conversation with her about my cancer being stage 4 while I was in the hospital. I don't know what my stepdaughter was told, but I've been getting texts that just say things like, "I love you." I know I need to have a conversation with her as soon as I'm home.

    I want to surround all of you with love and hope and best wishes. Your comments mean so much to me.

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