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I feel like it will never end

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Hello, I'm new to posting but not new to this site. 12 years ago, at age 33, I was diagnosed with stage 3a invasive ductal carcinoma. I found this forum helpful then and have returned for support. That year I completed chemotherapy, had a unilateral mastectomy with multiple recons over the years, and completed radiation treatment. I completed 10 yrs of Tamoxifen, finishing up in Dec 2022, and felt free for the first time since my diagnosis in 2012. Last summer I had my routine annual mammo on my good side where my real breast is and it showed an asymmetry. I didn't know what that meant at the time but I felt more deflated than ever. I now that what they saw could only be seen it from one angle. They suggested a mammo guided biopsy but when I went for it they could not see anything via mammography so did not proceed with the biopsy. They suggested an MRI which I had and nothing was identified. I was told to repeat both in 6 months. In January I had both tests scheduled for the same day. Immediately, I was called in by the Radiologist for my mammo. They still see what they saw 6 months prior but without any change. And they saw it on the MRI this time around as well. They said it was not a tumor but they didn't know what it is they were seeing. They said I was being put under surveillance for 2 yrs with mammo + mri repeating every 6 months during that time. They said cancer will evolve within 2 yrs so if it is cancer it will show itself and if at the end of 2 yrs, whatever they're seeing is still there, unchanged, it isn't cancer. I have pain in that breast, just like the pain I had in the breast that had cancer 12 yrs ago. I'm no longer seeing an oncologist. I graduated into the survivor program once I completed Tamoxifen so I just see the NP that leads the program. She's absolutely terrible, but that is beside the point. My question to the group is, have you been through this? I'm trying to get a sense of how often this happens and what the end result is. My next scan isn't until July but I just can't get it out of my head. I don't want to be pacified. I like facts and I'd love to hear your experiences with this, good and bad. I'm now 45 and perimenopausal. I'm wondering if my hormones could cause the change they are seeing. They said it wasn't that but I don't see how they could be certain. Between perimenopause and the 10 yrs of Tamoxifen, my hormones are insane. Please share what you can. Thx 🙏

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  • moderators
    moderators Posts: 8,282
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    @veghead so sorry you find yourself in this constant cycle of worry. You deserve the best possible attention and care. If you are not satisfied with the NP and you are having pain, we suggest that you reach out to either your PCP or even GYN for a referral, if that is needed to get your scans moved up. We understand wanting to be "in the know". Even if the pain is due to menopause (or peri menopause), it's important for you to get to the reason for your pain. In other words, advocate for what you feel you need, and follow your body and your gut. We're all here for you!

  • mandy23
    mandy23 Member Posts: 113
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    Hi @veghead -

    I'm sorry for what you are going through. I went through something a bit similar. My first BC dx was in 2003. 19 years (!) later, I had a routine breast MRI 3 months after a clear Mammo. They saw 'something'. They did an MRI-guided biopsy which came back negative. The radiologist wasn't happy with the result because she still didn't know what it was. They had me come back 3 months later for another biopsy. Unfortunately, the (different) radiologist that day didn't think it was necessary and had me come back after 6 months.

    6 months later, it had grown slightly, so they did another biopsy. Positive for BC. Fortunately, it was a 'new' BC, not Mets, but that began the roller coaster once again.

    That's my story and my story is not your story. That being said, it's important to advocate for yourself. I would concur with the mods and see if your PCP can get involved. At minimum, I would want it biopsied if they don't know what it is. Are they able to do an MRI-guided biopsy? It did seem more complicated than the biopsy I had with my first dx, so maybe they can't do it if it isn't big enough? The good news about that is that even if it is BC, it is likely an early stage.

    As you say, it may be 'nothing', being peri-menopausal, but if your "gut" doesn't feel good about it, follow up on it. Hoping your PCP can get involved…..and if yours isn't helpful, try another?

    Good luck to you. I know how difficult all this can be, especially when you don't know what you don't know.

    Hang in there.