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De Novo newbie trying to not panic

lacorneille17
lacorneille17 Member Posts: 19

Hi all. In Feb of this year I was diagnosed with IDC, hr +(over 95%) HER2 -. Large multifocal tumor in my right breast and one lymph biopsied positive as well. The tumor and lymph node were concerning enough to the surgeon I was sent to first that she ordered a pet CT which lit up in my breast, that one lymph node, and a small spot on my pelvis. The pelvis was biopsied and in March I was confirmed de Novo stage 4 because it's the same cancer as my breast..I was started on Lupron shots and then two weeks later started letrozole and kisqali.

am full of anxiety constantly, and I'm working with a therapist about that and she's sent me to an NP for medication. I am 45.

I guess I'm just saying hello. I don't even have a question and I realize it's not really my place to seem reassurance from other people who are dealing with this same disease. This is a scary time and a scary place.


The treatment is so surprising, I expected chemo and surgery and radiation and now it seems I will not be doing any of those things.


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Comments

  • AKJ
    AKJ Member Posts: 115
    edited April 2023

    Lacornielle, you’re in the right place. I’m fairly new at this too. It’s shocking. Believe it or not, it gets a little better. Take advantage of all the services your clinic offers. Palliative care is helpful

  • illimae
    illimae Member Posts: 5,569
    edited April 2023

    lacornielle, I was diagnosed de novo with a single hip bone met at 41 in 2016 and I did get chemo, surgery and radiation. Some MO’s would consider you oligometastic and do treat with “curative intent”. But just know that surgery hasn’t proven beneficial for stage 4, the studies have conflicting info and I recently read about radiation perhaps not having a big bang for the buck. Might be worth asking about, so you at least get an explanation that you’re comfortable with. I assume you’d start on ibrance, I know others doing well on that for years. Things will get better once a plan is in place, you will find you footing. Welcome :)

  • lacorneille17
    lacorneille17 Member Posts: 19
    edited April 2023

    aKJ thank you. I am hooked up with my office counselor and they are very helpful and taking my anxiety seriously. I hate the term palliative care because I've only ever heard it used in the hospice setting, although the nurses constantly correct me on that.

    Illamae, my MO is open to input and has mentioned possibility of surgery and radiation in the future but has started me on kisqali. She is very positive about it, and research seems good? I am also close to an NCI cancer center (Sloan Kettering) and she is arranging me to have a second opinion there. She has mentioned they may change the treatment plan, which is another reason she has given for starting on the AI and cdk4 inhibitor (in addition to it being best practice) that it is easier to switch from that to chemo than the other way around. I trust her and she seems to both know what she is doing, be very up on research, and also open to other opinions.

    So far minimal to no side effects which is good too. It's just all so new and terrifying.

    Physically I feel completely fine. No difference between now and the day before I went in for screening mammogram except now my anxiety is through the roof!


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,726
    edited April 2023

    hello,

    I’m at 11+ years with a single bone met and no progression. The initial tx was rads to the bone met and AI’s since then. I did have a bmx but my bone met was discovered by accident about 6 weeks after surgery. No chemo, no talk of curative intent back then but for some inexplicable reason I’ve done well. Take care

  • nopink2019
    nopink2019 Member Posts: 384
    edited April 2023

    This is definitely the place to seek reassurance. I think that's why many of us check in. Confidence in your MO is a great start.2nd opinion is a good thing, will give you more information and hopefully confidence. I tried a couple of anti-anxiety meds before one worked well. Keep a list of how you feel so you will be sure to communicate well. The stage4 forums are a good place if you're curious about how others are handling similar treatment. Keep us informed and do what you need to take care of yourself

  • moderators
    moderators Posts: 7,884
    edited April 2023

    We're so sorry to hear, lacorneille17! Please, let us know how you're doing. Our thoughts are with you and we are all here to support you.

    The Mods


  • 42young
    42young Member Posts: 124
    edited April 2023

    I was the same 4.5 years ago at 42 when my son was in middle school. I didn't think I will make to his high school graduation, but here I am still stable on anastrozole, ibrance & xgeva & will see my son graduating in a few weeks. Please keep hoping since some treatments can work for years!

  • lacorneille17
    lacorneille17 Member Posts: 19
    edited April 2023

    Thank you. My biggest worry right now is not seeing him grow up/him not having me around. He knows I have cancer but since he's eight he doesn't know the stage. He has been extra snuggly lately. I cry about it nearly every day

  • sondraf
    sondraf Member Posts: 1,579
    edited April 2023

    The first six to nine months i was a total wreck but I got out of the hole eventually and now i complain life is too dull. You will see the treatment starting to work and you get in the rhythm of it. Its wonderful to see that your doc is open to arranging a second opinion and open for potentially shifting your treatment to something more aggressive. I actually DID end up having a mastectomy/ reconstruction and radiation to the breast two years after diagnosis due to local growth - they wanted to see if that local treatment would help keep me on Ibrance. It didn't quite work out that way in the end, but it removed a few big wads of cancer for which I was grateful.

    I think there is a de novo thread somewhere but its been buried. There's quite a few of us floating around who can answer any questions.

  • lacorneille17
    lacorneille17 Member Posts: 19
    edited April 2023

    Thank you. I am interested in mastectomy eventually if it's an option and nice to know that you were able to get reconstruction. I just want the cancer out of me but my MO says it's also good to see if the therapy I'm on now is working first. And I'm hopeful that some time, continued therapy, and possibly better anxiety medication will help with some of the emotional issues, but I also think it's completely normal to have this level of emotional fragility with such a sudden diagnosis


    Everyone here is so supportive and knowledgeable on it's very helpful

  • mojos
    mojos Member Posts: 29
    edited April 2023

    It is wonderful that your MO is so supportive of getting a second opinion. I also am de novo stage 4. My MO at the time approved my having a single mastectomy in the cancer filled breast; I have no regrets about that. I am in my 4th year on Ibrance and anastroloze. Beginnings are tough but it does get better and life goes on. My best to you!

  • nopink2019
    nopink2019 Member Posts: 384
    edited April 2023

    lacorneille17- accept all those snuggles from your son. Makes you both feel better. I even get those from my 14-year-old nephew. Hopefully your meds will work for many years and you'll get the same snuggle at his wedding.

  • kbl
    kbl Member Posts: 2,675
    edited April 2023

    Lacorneille17, I’m sorry you are having to deal with a de novo diagnosis. I am going to place the link to the de novo thread I started quite a while ago that SondraF mentioned. It has been quiet lately, but maybe you can read through it when you have some time. I am thinking of you.


    https://community.breastcancer.org/forum/8/topics/876918?page=197&post_creation=true#post_5796732