More questions than answers

Snaffle53
Snaffle53 Member Posts: 140
edited August 2019 in Diagnosed and Waiting for Test Results

So, swollen axillary lymph node tested positive for cancer. Breast cancer most like source based on pathology. But since then both mammogram and breast MRI have been negative.

Has anyone here been diagnosed with breast cancer with no tumor of any size found in the breast

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2019

    Snaffle, usethe search function here and try using the term “occult” There are other women and threads here about/with occult breast cancer

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  • Snaffle53
    Snaffle53 Member Posts: 140
    edited August 2019

    Thank you for sending me in some direction. This is testing my patience to the max.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2019

    I’ll bet. Such a weird and scary situation to find yourself in. I had a rare other cancer and it is odd having so few people in the same boatwith you

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  • Snaffle53
    Snaffle53 Member Posts: 140
    edited August 2019

    This week I have a biopsy of mediastinal lymph nodes via Bronchoscopy. I don’t know what i’ll Do if results only confuse things further. I want my Oncologist to get my diagnosis right. But I need to start doing something about all this instead of going through test after test. OBC or not, I’m pretty certain based on my anxiety and familial history that I will opt for BMX. At this stage, it is the only thing that will give me any peace of mind. I’m pretty sure i’m Headed towards an axillary lymph node dissection too.

    I think I can get through just about anything as far as treatment. I just want to get to it

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  • BevJen
    BevJen Member Posts: 2,523
    edited August 2019

    One suggestion: if at all possible, make sure you are being seen at a large cancer center. If you get conflicting or indefinite results, try to get a second opinion at such a center. It's worth it. Good luck


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  • Snaffle53
    Snaffle53 Member Posts: 140
    edited August 2019

    I am being referred to Dana-Farber for a consult and second opinion. I’m distressed that this means more waiting. But, I do want the doctors to get my diagnosis correct so the best treatment plan can be formulated for me.

    I had the Bronchoscopy w/biopsy two days ago. I’ve not yet heard if they got good samples of tissue or not. I sure hope so. I just know that this waiting is terrible. I’m hopelessly distracted to the point of really not being able to do very much. I just want some answers and a game plan.

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  • KBL
    KBL Member Posts: 2,521
    edited August 2019

    Hi, Snaffle53. I’m just seeing this post, but I want to tell you that you are not alone. I went in for an endoscopy because I had lost over 10 pounds in six months and was having trouble with eating. I would get full very quickly. Doctor said he didn’t see anything but took some samples to have biopsied of my stomach. Got a result of metastatic adenocarcinoma. They didn’t know where the cancer came from, but it looked like the breast. Had a second endoscopy because they wanted more samples. This time cancer in two places in my stomach. They did tissue testing and ruled it was breast cancer.

    I had a PET scan, a mammogram, an ultrasound, and a breast MRI. They found nothing in my breast. It’s hard thinking you may be the only one with occult breast cancer. It’s the weirdest thing. I have no breast cancer in my family.

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  • Snaffle53
    Snaffle53 Member Posts: 140
    edited August 2019

    KBL, so sorry you are here with the rest of us. It just chance my cancer was found before spreading to other organs. It’s just so strange that all those negative mammograms pretty much mean nothing. I was vigilant about self breast exams too. Nothing.

    I’m going to pray your treatment is effective giving you lots of quality time. Cancer sucks

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  • KBL
    KBL Member Posts: 2,521
    edited August 2019

    Thank you, Snaffle53. I appreciate it. I just became a first-time grandma, so I have something wonderful to think about. I know I wake up every morning shaking my head in disbelief and then get on with my day. Cancer does suck, but I refuse to let it consume every waking moment. I’ve only known since May. I will be watching what they say from Dana-Farber. I agree with most, the waiting to start treatment is the worst. I’m thinking of you.

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  • Snaffle53
    Snaffle53 Member Posts: 140
    edited August 2019

    Bronchoscopy results were all negative for cancer.

    And tomorrow is my big day at Dana Farber. I am so hoping for an official diagnosis and treatment plan. I just hope my expectations aren’t set too high.

    Hopefully the test phase is done. It’s time to start doing something about this cancer in me

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  • KBL
    KBL Member Posts: 2,521
    edited August 2019

    Thank you for the update. That’s great news. Please let me know how the second opinion goes and what treatment is in your future. It’s always nice to get some good news for a change.

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