Different DX now?

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Melonda
Melonda Member Posts: 309
edited October 2021 in Just Diagnosed With a Recurrence or Metastasis

I had posted like 2 weeks ago about a new dx, first it was just BC, then it was BC liver mets and I had adjusted to it and I know people who are living with that and I knew where to find support and I felt like I had a handle on things because I'm 14 years out and I feel...not like an expert but like I get how BC works you know?

Well last week they called and said that the pathology was back and that it's a new primary and now it's GI cancer and almost definitely cholangiocarcinoma or bile duct cancer. Because it's rare and aggressive it is hard to dx and it needs more biopsies and scopes to officially dx but mine is definitely large and inoperable. Basically I'm stunned because I know nothing about this and I looked at one thing, got terrified and haven't looked again because I don't have the official 100000% dx and treatment plan yet.

I'm a person who likes to research and plan and know things so right now I am going insane and from what I know the prognosis it horrible. DH and I are devastated. I'm holding onto a sliver of hope but not much.

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited October 2021

    Melonda, sending lots of gentle hugs your way ((((())))). Of course you are devastated by the information you have been given. Hoping you find some comfort as you move to dx and rx.

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  • LW422
    LW422 Member Posts: 1,312
    edited October 2021

    Bless you, Melonda. We all understand your fear and devastation, but try to hang tough until all the tests are done. My very best to you for the most positive outcome.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited October 2021

    Sending you hugs and supportive thoughts.

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  • Jelson
    Jelson Member Posts: 1,535
    edited October 2021

    Melonda- so sorry you have been blindsided by this new diagnosis. as you learn more about your particular situation, maybe you are eligible for clinical trials?

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  • Rah2464
    Rah2464 Member Posts: 1,647
    edited October 2021

    Melonda I am so sorry to hear about your diagnosis. God Bless you. (((Hugs)))

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  • Sarah_78
    Sarah_78 Member Posts: 137
    edited October 2021

    Dear Melonda,

    I'd like to send you my positive thoughts and hope you get the answers you need very soon. Try not to google and jump into conclusions. As we know each cancer has types then subtypes and don't assume yours will be the worst, it might have a good treatment option depending on the pathology. The sentences "almost definitely this or that" doesn't sound very definite to me. Breathe in and out, think positive (as much as you can) and let's hope this turns out to be a better diagnosis than MBC maybe.

    *hugs*

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  • Melonda
    Melonda Member Posts: 309
    edited October 2021

    Thanks everyone, I haven't looked for or found an appropriate support group yet because I'm scared of looking up info as the tiny bit I saw was seriously scary and I want to wait until I hear it from the oncologist. After that I guess I'll look for the GI version BC support? idk, I'm overwhelmed,

    The sliver of hope I have is around the 'not 100%' yet and that we have to do more testing to verify. The oncologist is at The James at OSU and is a specialist in this area, he does research and is on a clinical trial now for this so I feel like I have a good team and he will try to get me the best care possible. And I'll do whatever treatment they give me.

    Right now I'm in so much pain though from the mass on my liver that we can't do anything about until we know more and it's so uncomfortable. That's another reason I want to start treatment ASAP.

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  • Aram
    Aram Member Posts: 417
    edited October 2021

    Melonda, I am really sorry you are facing this. My cousin, who is also BRCA1+, had bile duct cancer about 5 years ago. His was first deemed non-operable as well but then he was able to do the surgery. He is doing well 5 years after surgery and chemo. Maybe you might be able to get a second opinion as well?

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  • Melonda
    Melonda Member Posts: 309
    edited October 2021

    Aram, my fear is based solely on the tiny bit I saw, I haven't seen my GI onc yet - that's tomorrow but my BC onc told me it's inoperable because of the size, I am hoping it can get to be operable once I do chemo but I don't know yet because I haven't seen the GI onc. Truly once I see him maybe my outlook will completely change (I REALLY hope so!) because right now I am feeling so hopeless. But hearing about your cousin gives me some so thank you for that! And yes I absolutely want to get a second opinion, I just am waiting fully for the first one. This waiting is such bullshit uggh.

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  • typhoon
    typhoon Member Posts: 80
    edited October 2021

    Melonda - My dad was diagnosed with a large, inoperable distal bile duct tumor when he was 70. His doctors were able to reduce the size of the tumor through chemotherapy, and he underwent a successful Whipple procedure after he finished the initial rounds of chemo. He lived happily and busily for seven more years (still doing chemo throughout), and died in his sleep of a heart attack (unrelated to the cancer).

    I'm so sorry that you are in pain, and that you are facing this new and frightening diagnosis. There *are* success stories, and I hope you are one of them.

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  • moth
    moth Member Posts: 4,800
    edited October 2021

    Thinking of you Melonda. Cancer is such a bastard, ripping the carpet from under our feet time & again... I hope you get more answers and a treatment plan soon! The waiting sucks

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  • Melonda
    Melonda Member Posts: 309
    edited October 2021

    Thank you to people who are giving me some hope! I've been completely freaked out the last week, but I feel a little bit more like I can handle it tomorrow.

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  • KBeee
    KBeee Member Posts: 5,109
    edited October 2021

    I'm so sorry you are dealing with this. Hoping you have a treatment plan in place soon. Don't hesitate to get more opinions, even after treatment begins.. Thinking of you. Because you've had multiple cancers, also ask your doc about genetic testing.

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