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10 years after BC diagnosis, I have mets in lung which are BC

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Hi All

My oncologist called this morning to confirm that the node in my lung is indeed breast cancer, it took them a few days to figure out but they knew it wasn't lung cancer.

I'm so shocked. I had stage I, HER2+ breast cancer diagnosed 10 years ago and had a lumpectomy, lymph node removal (which was clear for cancer), taxol, herceptin and radiation.

After a totally unrelated issue where I had severe pain coming from my spleen my doctor sent me for a CT scan. After seeing that I had a splenic infarct I had another CT scan to rule out pulmonary embolism and they saw a nodule in my left lung almost directly behind where my initial breast cancer was. PET scan light up the nodule and a lymph node. Biopsy last week, plus there is another area of concern in my right lung (biopsy scheduled for next week on that.) Nothing else was lighting up from my PET scan.

My oncologist said it is treatable, but will not see her until after my next biopsy to discuss a plan. But I have been reading more today and am so worried that this is a stage IV cancer and am honestly freaking out.

Is anyone else going through this sudden appearance in lung?

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  • exbrnxgrl
    exbrnxgrl Member Posts: 4,853
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    fossf56,

    I am sorry to hear that you’re going through this. It is shocking for many who recur years after their initial diagnosis as this is something not spoken about often. If your biopsy shows breast cancer, it is, unfortunately, stage IV. Stage IV or metastatic breast cancer is when breast cancer moves beyond the breast, typically brain, liver, lungs, or bone. The lesion did not suddenly appear and has likely been growing for some time but not yet symptomatic so there was no reason to suspect anything. Your mo is correct in that it is treatable, though not curable (sorry to be the messenger). That being said, treatments continue to evolve and improve. I having been living with stage IV for 12+years (I am not typical) and have seen survival time increase markedly and new drugs are in the works.

    I know this is very stressful (all of us stage IV folk have been there)and a lot to digest. Try to focus on what you know and not spend too much time on the what ifs. You might also want to check out our stage IV lung metastasis thread. I would link it for you but I’m having copy/paste issues. Again, I am so sorry. Take care

  • moderators
    moderators Posts: 8,081
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    Dear @fossf56, we're truly sorry that you find yourself here under such difficult times, but we're glad you've found our community.

    We understand how shocked and overwhelmed you must feel, and the worry and fear that come with the uncertainty surrounding the stage of your cancer. Hope you get more information soon. Meanwhile, we are here to listen and support you, as you can already see. And if you want to check it out, here is the mets to lung thread, thank you, exbrnxgrl!

    Good luck with biopsy results and further appointments. Please, come back to let us know how you're doing. We're thinking of you!

    Sincerely,

    The Mods

  • cookie54
    cookie54 Member Posts: 701
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    @fossf56 So sorry to hear about your lung met. I'm sure it was very shocking after 10 years of thinking you are finished with cancer! Cancer is just so sneaky and can lay dormant or grow slowly . As @exbrnxgrl said there are many new advancements for Stage IV to improve overall survival rates. It takes quite some time to digest the Stage IV diagnosis, honestly I think it took me the whole first year to settle down. I am in year 2 and my treatment is holding things stable.

    Wishing you the best with the next biopsy and a treatment plan.

  • snm
    snm Member Posts: 93
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    @fossf56 I'm wishing you strength and hope. I'm sorry to hear your news..lots of emotions going through me as I was diagnosed with stage 1A Her2 positive last year- similar to you. I thought the 5 year mark was the safety goal to reach but your story emphasizes that we need to keep checking in with our bodies as symptoms come up. I really am pulling for you to get through this.

  • fossf56
    fossf56 Member Posts: 13
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    thank you all, I'm finding that being on this site and seeing so many who are still living well with many years of dx helps.

    I got laid off two weeks ago, so am also searching for new job but constantly distracted by the cancer. Not the best month for me and the family. Lets hope that May brings more insight and the treatment plan.

  • fossf56
    fossf56 Member Posts: 13
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    snm, I'm so sorry to hear about your hopefully only diagnosis.

  • janmnyc
    janmnyc Member Posts: 2
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    Hello all, I'm new to this boards here and @fossf56, I am in a very similar situation. I really feel for you. I was treated for stage 2b TN breast cancer 13 years ago (mastectomy, ACT chemo and radiation) and found out a few weeks ago that I had lung, bone and lymph mets. I had been feeling some pain in my neck and back but thought it was costochondritis. Then I noticed a little bump at the mastectomy site so finally went to check it out. CT scan, ultrasound and biopsy later showed it was cancer. We were completely devastated and basically cried for a week. I am feeling little better now that I've started treatment (abraxane and keytruda). I've only had one but so far, so much easier than the chemo 13 years ago. I'm keeping my fingers crossed that the treatment remains tolerable. Not sure if there is an cumulative effect—can someone share their experience?

    It's still really hard to think about the fact that this is not curable and I am afraid that my life is really going to change. But it's really comforting to hear that so many of you are doing well and for many years, that really helps me to be optimistic. I am also not looking forward to long term chemo, but I had a port placed last week and already that seems like it will be a big help. No more painful needle sticks in my sad veins! I will also really miss my hair:(. Just trying to find our new normal, seems like it's going to take a while.

    wishing you all the best.

  • moderators
    moderators Posts: 8,081
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    @janmnyc, welcome to our community. We are so glad that you reached out to join us and share your story, although we hate the reason that brought you here. As you navigate the site and the discussion forums, please let us know if we can be of any assistance.

    In case you didn't know already, we wanted to let you all know that each week we hold free virtual meetings where BCO members can ask and share questions in real-time. If you are interested, here is the webpage where you can register: https://www.breastcancer.org/community/virtual-meetups

    Let us know if you have questions. And looking forward to hearing more from you soon!

    The Mods

  • cookie54
    cookie54 Member Posts: 701
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    @janmnyc Hi , Sorry to hear you have been drug back into the cancer world. I can imagine how devastated you and your family feel after being stable for many years. It certainly is a tough pill to swallow that we are considered treatable but not curable. I have learned to think of each day and each scan one at a time. It helps me control all my worries about future possibilities of all I will miss.

    Are you still TN? I am and I have been on Keytruda and Xeloda since I was diagnosed MTNBC about 2 years ago. I find Keytruda to be very tolerable and have not experienced any big issues. I can't speak much on abraxane's I was only on Taxotere for a short time in 2016. As I'm sure you know neuropathy can be a cumulative effect. Agree having a port is definitely an easier way for infusions.

    Wishing you the best with your treatment and hope you have little or no side effects.

  • janmnyc
    janmnyc Member Posts: 2
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    thanks, @cookie54! I am mostly still TN, but they told me that I am HER-2 low. But maybe I was that all along. Just had a session of just abraxane today and so far, so good. I agree- best to take each day as it comes. Trying to be zen and appreciate feeling well right now.

    hope you have a good weekend!

  • cookie54
    cookie54 Member Posts: 701
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    Ok, gotcha. Glad it was a good day today! Yes I agree I always give thanks for every good day also. Enjoy your weekend as well

  • fossf56
    fossf56 Member Posts: 13
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    I'm back! Saw a new oncologist today, mine is on vacation and leaving.

    So have my plan from the tumor board and getting ready to have a brain MRI (kind of scary) and bronchoscopy to see if the lymph node involvement is Breast or Lung cancer.

    The oncologist want me to start on a chemo plan asap, so shuffling along waiting for insurance approval and will be getting a port next week.

    Will be taking TCHP every 3 weeks x 4.

    • docetaxel (Taxotere)
    • carboplatin (Paraplatin)
    • trastuzumab (Herceptin)
    • pertuzumab (Perjeta)

    Then Herceptin/Perjeta until I don't know, when it stops working?

    After the chemo if there is any lung cancer left they will do targeted radiation but the oncologist did mention that all of the treatments will help tackle that too.

    I'm feeling so much more relief. I mean it's still shit, but you know what I mean.

  • snm
    snm Member Posts: 93
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    @fossf56 so glad that your care team has a plan! You might want to check out "ER-, PR-, Her2+ Roll call" group as there are others who have recently started similar treatment regimen. Sending you good vibes!