Understanding Staging

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Here4Mom28828
Here4Mom28828 Member Posts: 3
edited May 2017 in Caring for Someone with Breast cancer

Hello, I'm new here. My mom is 68 and was recently diagnosed with Stage 2 er+pr+ breast cancer. She had a mastectomy on the right side back in April (followed by a terrible infection at the mastectomy site that has left her packing a deep wound for weeks - what a drag. Her pathology did show lymph involvement, unfortunately. In preparing for chemo (16 rounds...first four, red devil, then 12 weeks of taxol, then radiation), she is getting bone scan and pet scan this coming week. I'm confused as to why they gave her a stage when the results of these scans could change everrything if there are signs of metastasis? It just sEEms like a head game. We had all felt relieved after her pathology showed stage 2, but now with these scans, it feels like we are back to square one. So far, this whole experience has felt like doctors tell us one thing only to have it change. ANyone have insght

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  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2017

    Wait until you get the scan results. I was stage 1 and no lymph nodes involved but I had full scans to see if they found any signs of metastasis. I think it is pretty common.

    How many nodes were positive? I am suprised they are recommending chemo given she is er and pr positive. Is she her2 positive? In that case they would recommend chemo and herceptin.

    It might be a good thing to get a second opinion. If she has fewer than 3 nodes positive and is her2 negative she should get an oncodx test to see if chemo would be effective or necessary.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited May 2017

    It's normal for staging to change along the way, depending on what is found. I went from stage 1 to stage 2 after surgery because of a lymph node then my CT and bone scan after showed nothing. No one actually even dwelled on the stage or mentioned it at all (I figured it out on my own) and it wasn't until I saw stage 2 listed on my survivorship care plan that I realized I had correctly staged myself.

    It's also normal for the plan to change along the way, that's just breast cancer. It doesn't mean they don't know what they are doing...or are jerking you around...they just take things one step at a time. They are just covering all bases with the scans, a lot of docs don't even do it anymore with early stage cancer.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited May 2017

    I was DX as Stage 2 at three onset. My ONC said I was staged wrong by the BS and should have been Stage 1b.

    I had a micromet show up in the SN on the Path report after my lumpectomy. My BS was surprised. I was stunned. My ONC ordered the Oncotype test. My score of 11 allowed me to dodge chemo.

    Doctors aren't infalliable. I think for the most part they do a good job but of course there are exceptions. I know several women who suffered more as a result of a missed DX.

    I'm sorry your mom is going through all of that. It's s good thing she has you for help and support.

    Diane

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2017

    Well, staging is often unclear until surgery in many cases. Mammograms, ultrasounds, MRIs: none of these imaging techniques is perfect. The ultrasound showed that my tumor was 3.9 cm; the MRI showed that it was 5 cm+, with a satellite. Both showed one node as being suspicious (which was then subject to a fine needle biopsy, which showed that it was positive for cancer). I may never know my true stage because I had chemo before surgery and all of the active cancer was gone by the time I had my lumpectomy and ALND. In the end, the most important aspect of my cancer was its HER2 status (it was positive), not my stage. Because my cancer was HER2+, my doctors were going to recommend chemo no matter what.

    In a similar fashion, your Mom's doctors must have some reason for recommending chemo. Ask them! It may have absolutely nothing to do with stage.

    ((Hugs))


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  • Here4Mom28828
    Here4Mom28828 Member Posts: 3
    edited May 2017

    Thanks so much for writing back, all, I really appreciate the insight. This is such a rollercoaster and it's nice to have a place to go with my questions. It's often hard to go to my mom directly because she is overwhelmed as she deals with this new reality, and I feel like sometimes my questions cause more stress for her. I am a researcher by profession (public health) and I have quite a bit of medical and health-knowledge...just enough to be dangerous, I guess! ;)

    Mom's cancer is 2a thus far (pre bone scan and pet scan which are happening today). She is ER+PR+ and HER-, which is "good" in the grand scheme. She did have node involvement but the way she described her pathology report/nodal involvement was very confusing to me. I believe they said she had 3/4 nodes test positive but the surgeon also commented on being disappointed because she had "scooped a whole bunch out" but the path lab had only tested a few. Weird response but I attribute this possibly to me getting the information second/third hand from my mom and dad who I do not think always hear and or digest the information they are receiving properly. Unfortunately, I live 4 hours away and have a just turned 6 year old, a not yet three year old and a 5 month old...so I am not able to be there for every appointment as I wish I could. I am trying to encourage mom to write things down more or even use her iPhone to record. I also have asked her to get me a copy of her path report to look over. It's really hard not being there all of the time. I was there for 7 days after her mastectomy and was able to meet with her surgeon, etc.. but have not been to any appointments since that.

    There was never a question on chemo for her. They told her this from the start because of the location of the tumor (almost 2 cm in size) being so close to the chest wall in the lower quadrant of the right breast. When they did the mastectomy, the plan was to put a tissue expander in and they ended up NOT doing that because the surgeon ended up removing a decent piece of skin given how close the tumor was to the chest wall. She wanted to ensure she got clear margins, which she did. Thankfully she didnt get the expander as she ended up developing that infection at the surgical site which would have required removal of the expander.

    Chemo port goes in June 9th. Crazy how much we've been through already and we have only just begun. I really, really, really appreciate the support from you all. My mom is my very best friend. If I could do this for her, I think I would. Just praying for a positive outcome for her and staying focused on being her biggest cheerleader.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2017

    Hope your Mom's PET and bone scans don't pick anything else. I had AC+T; the AC was the harsher regimen, so I'm glad I did that first. Even though you're far away from your Mom, I'm sure she appreciates your support. ((Hugs))

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  • pupmom
    pupmom Member Posts: 5,068
    edited May 2017

    That's what they do. Staging can change at any time, and frequently does after surgery. Mine did. All pre-surgery scans indicated no nodal involvement. Turns out I had micromets in 2 nodes. I am also 68 now. Diagnosed at age 62 and doing great! Best wishes to your mom!

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