Confused Staging

Options
1207262
1207262 Member Posts: 28
edited September 2019 in IDC (Invasive Ductal Carcinoma)

Hi, I’m twenty-two and live at home as a very recent college grad. My mom was just diagnosed with breast cancer. I’m so anxious and paranoid that I can hardly function, and have been lurking these boards for a bit and know this seems universal.

I have anxiety, though, as does my mom, so I don’t know if reading on here so much is good for me. My aunt tells me to stay off the internet, it’ll upset me. She’s usually right about that, but I can’t help it. I’m so paranoid the diagnosis is going to keep getting worse and my mom feels the same, though I hide it for her sake. I know it’s the anxiety talking, but the dark thoughts won’t leave.

Anyway, I digress. My mom got her report from her first doctor (who she doesn’t like that much and is going to Jefferson in Philadelphia for a second opinion tomorrow). They staged her as 1b, but this doesn’t make sense to me based on my [obsessively anxious] research.

This is some of what the “surgical pathology report” says:

Estrogen Receptor (clone SP1): positive. Nuclear staining is seen in 98% of infiltrating tumor cells. Intensity of staining: strong

Progesterone receptor (clone IE2): Positive. Nuclear staining is seen in 82% of infiltrating tumor cells. Intensity of nuclear staining: strong

HER2 (clone 4B5)

Indeterminate (+2)* SENT FOR FISH: yes

*Note: results (+2) will be sent for FISH testing. An addendum will be issued when complete.

Final Dx:

A.) right breast retroareolar mass buckle clip MRI guided vacuum assisted needle core biopsy: poorly differentiated invasive and in Situ Ductal carcinoma involving multiple cores. Single largest longitudes extension of the tumor 1.2 centimeters in this biopsy material

Also has notes saying there is no lymph node involvement on the MRI (which I know can’t be known for sure until the surgical aspect, but then why is it stage 1b instead of 1a at this clinical stage? I know stage 3 is aggressive, which scares me a lot, but still on everything I’ve read, it says even if there is microscopic lymph node involvement, if you’re ER/PR+ you’re likely to be staged at 1A. So I’m confused.)

Thank you all lovely people 💖



· Share on FacebookShare on Twitter

Comments

  • DorothyB
    DorothyB Member Posts: 305
    edited September 2019

    Was the stage on the pathology report? If so, exactly how was it written? Normally a person isn't given a stage until after the surgery (lumpectomy or mastectomy)

    · Share on FacebookShare on Twitter
  • flashlight
    flashlight Member Posts: 698
    edited September 2019

    Hi 1207262, I agree with DorothyB nothing can be determined until she has the surgery. Is the surgeon the doctor she didn't care for? I wasn't crazy about mine either, but she did a great job. It is totally normal to be anxious, but you don't want your Mom to be worried about how you are feeling. It is important for her to feel that things are as normal as possible. The hardest thing I had to do was tell my two daughters and try to be strong for them. Can you go with her to the appointment and be her eyes and ears?

    · Share on FacebookShare on Twitter
  • 1207262
    1207262 Member Posts: 28
    edited September 2019

    Hi, thank you for your responses. It was written on the printed page in a way that looked official. There's notes on the page that say “1b because of no image detection of lymph node involvement". I don't understand that part. I'm not sure what kind of doctor he is, but I think he was the surgeon giving and explaining the pathology report.

    They did a core needle biopsy and MRI along with a mammogram for the report and diagnosis.

    I was under the impression that there was a clinical stage before surgery and a pathological state after. However, the paper very explicitly says “pathology report" at the top.

    Her tumor is right under her nipple, so he's saying she should get a Mx and also having her take a genetic test to see if a double Mx should be suitable. My mom is going to Jefferson tomorrow for a second opinion about that. It's all so confusing and overwhelming.

    I want to go with her, but she's bringing her sister because she's a doctor (not oncologist, but my mom feels she's more suited for note taking and understanding things). To the first doctor who did this report, my dad went and took notes, but he's not very good at understanding medical lexicon or anything. He was just emotional support and note taker, essentially.

    · Share on FacebookShare on Twitter
  • Mymomsgirl
    Mymomsgirl Member Posts: 174
    edited September 2019

    You could still consider going with her to her second opinion, there is no rule on how many people can go. When I went my husband when and we took his cousin because she is a Genetics Doc. I'm also surprised they put a stage one the report. My BS told me based on the report I would most likely be in the Stage 1 category, but I wouldn't have the formal stage until after surgery. I hope for her second opinion she is going to see at BS at a Breast Center, I think that makes a big difference in the care provided. Hang in there.

    · Share on FacebookShare on Twitter
  • Beesie
    Beesie Member Posts: 12,240
    edited September 2019

    Yes, there is Clincal Staging and Pathological Staging. Clinical Staging is mostly relevant when treatment such as chemo will be given prior to surgery, i.e. a treatment which might affect the size of the cancer that is eventually removed during surgery. When surgery is done as the first line of treatment, as will likely be the case for your mother, given the relatively size of her tumor, Clinical Staging is pretty much irrelevant and usually isn't even done.

    Clinical Staging is based on imaging reports and biopsy pathology. It is an estimate, a best guess. Pathological Staging is based on the combination of all pathology reports, including all biopsies and all surgeries. It is the final and more accurate staging (except in cases where treatment such as chemo is given prior to surgery).

    At this point your mother has the pathology report from her biopsy but does not have a final surgical pathology report. This means that any staging done now would be considered Clinical Staging and would be subject to change.

    What that all means is that you should ignore the reference to the 1b. At this point, it's meaningless.

    Edited to add: With regard to the suggestions that you go to the appointments with your mother, than is entirely up to her. She has the right to bring along whoever she wishes. If she has not asked you to attend, it may be because she doesn't want to worry about you and your reaction to the news as well as having to deal with the news herself and paying attention to what the doctor is saying. I understand and appreciate your interest, but that should not be your mother's priority.

    · Share on FacebookShare on Twitter
  • 1207262
    1207262 Member Posts: 28
    edited September 2019

    I'll ask my mom if she would like me there, but will leave the choice up to her, of course. I just want to be there in whichever way she needs.

    I'm still confused about why the doctor would say 1b, even as a guess. I suppose only he would have the answers to that. I hope there is more luck tomorrow with the new doctor.

    Thank you, everyone.

    · Share on FacebookShare on Twitter

Categories