So Confused

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Nulyte
Nulyte Member Posts: 62
edited October 2016 in Just Diagnosed

Hello Ladies, so last Month I saw the oncologist who clearly told me if the MRI showed less than 3 lymphs involved and no chest wall involvement and a low oncotype score she would be comfortable with no chemo and just double mastectomy.


So got the MRI results and it showed 1 lymph and no chest wall involvement and today she says ok so surgery first or chemo? I was to say the least confused. She then backpedal and said oh well I just assumed you wanted chemo. No not being luminal A and low score so now she is sending out the Mammaprint.
Anyone else have less than 3 lymphs and didn't do Chemo?
Thanks!

Comments

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2016

    There are many women here with 1 or 2 positive nodes who skipped chemo, either because their OncotypeDX scores were low enough, their tumors small enough, or if their OncotypeDX scores were “intermediate” but a subsequent Mammaprint came back “low-risk” and Luminal A. But they all had surgery first—as did most women who got chemo. Sounds like your onc. is considering “neoadjuvant chemo,” which means chemo before surgery to both assess response to the drugs and shrink the tumor to a manageable size for removal by whatever means (LX or MX).

    I assume by the ER/PR+ and HER2- that you had at least a core needle biopsy, and from "Stage IIB” the imaging showed the tumor is >2 cm and at least 1 lymph node was positive (how was the latter diagnosed?). But perhaps because of the tumor’s size she’d prefer to shrink it so that either lumpectomy would be possible or that BMX would be likelier to get it all. How do you know your tumor is Luminal A and “low score” if you haven’t had surgery and therefore surgical pathology yet? And how do you know only one node is positive without having at least a sentinel node biopsy, if not axillary dissection? You didn’t mention what that “low score” is. Oncotype DX is almost never done before surgery, because it needs a large enough sample to assay 17 genes, and it is never given if there are more than 3 positive nodes. By “low score” do you mean “grade?” Maybe your onc. thinks Oncotype DX would come back “intermediate” so she’s cutting to the chase by ordering the Mammaprint. If it comes back “low risk” she’d do the BMX and maybe radiation before endocrine therapy. If it comes back “high risk” (there’s no “intermediate” in Mammaprint), then the question is whether to try to shrink the tumor before surgery—both to see if it responds to chemo and if so, to either try for lumpectomy or have a better chance that the BMX would get it all. Or perhaps the game plan is to get rid of the tumor entirely and then go after any possible micromets via chemo.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2016

    I'm a little confused by your post. It sounds like you already had a lumpectomy and sentinal node biopsy? Or did you just have an MRI?


  • Nulyte
    Nulyte Member Posts: 62
    edited October 2016
    I have had a core biopsy ,that was when they sent the oncotype off of the fixed slide. The MRI showed only 1 lymph node involved which she told us meant that the others were measuring "normal" . When they did the breast biopsy they also did lymph node biopsy. My grade is 2 and its luminal A. All that information has been obtained in the 2 months we have been seeking an answer to how we are going to treat.
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2016

    What is your oncotype score

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2016

    Ahhh.. okay, I was not aware that you could do the oncotype test off of a core biopsy sample. It sounds like you are searching for opinions that would help you avoid chemo and I don't blame you for that. :)

    If there is no pressing reason for neoadjuvant chemotherapy (reducing the tumor to avoid a mastectomy), then it sounds like you might be better off to do the mastectomy first. You would then have more definitive information about the extent of the tumor, whether or not you get clear margins, know if more nodes are involved (assuming they inspect more during surgery). Since MRI's are not infallible, you may find out additional information not revealed on the MRI. At that point you may be able to have a more clear picture as to whether or not chemotherapy is the best weapon for your case.

  • Nulyte
    Nulyte Member Posts: 62
    edited October 2016

    Thank you and yes I'm trying to figure out if not having chemo , with less than 3 nodes, is a viable option or just a pipe dream. I have already decided , with oncologists input , on a double mastectomy , so shrinking the tumor for a possible lumpectomy isn't in my future. Thank you for your input it's greatly appreciated

  • windingshores
    windingshores Member Posts: 704
    edited October 2016

    When do you get your Oncotype score? How strong are your ER/PR scores? How do you know you are Luminal A? Do you have a ki67 result? (Not every lab does them or communicates them.)

    The MRI cannot tell what is really going on in the lymph nodes.

    If it has already been two months, I would at least do the BMX asap and then deal with decisions. If your ER/PR is low positive, that might change things. What part of your grade is higher- is it mitotic score?

    See if you can do hormonal therapy after surgery while you decide.

    Just fyi they sent my Oncotype out after biopsy and it caused me a lot of problems. I did find a doctor who retested it after surgery and it was exactly the same! (My HER2 was positive after biopsy but negative after surgery, so I had assumed there was something different about the samples from those different times.)

  • Nulyte
    Nulyte Member Posts: 62
    edited October 2016

    Hi all my info has come from the oncologist. She just said onco was low , grade 2 , luminal A, no Ki67 score. I am 98 % ER and 93%PR.We requested hormone therapy , because our first opinion said that after 30 years in the business he feels tamoxifen is just as effective if not more effective than chemo in high percentage hormone positive cancers.
    Like I said she is having the MRI read for a second opinion and they biopsied sentinel node.
    I have scheduled the bilateral for Nov 14th / just figured I would go with my gut and hope for the best.
  • Toad
    Toad Member Posts: 54
    edited October 2016

    A lot can change once they have access to the entire tumor. As others have mentioned, the MRI is not a good gauge of lymph node involvement. My stage changed from II to I, post surgery, and from high grade 1 (possibly grade 2) to low grade 1. The snippet they retrieved in the biopsy just happened to be "off" more than the rest of the tumor, and the MRI overestimated my tumor size by 62%. (The ER+/PR+/HER2- percentages also changed slightly, but not significantly). The sentinel node isn't typically identified until the actual surgery (they can guess, but it takes a dye/tracer injection to identify it), and since the biopsy only grabs a snippet, it is subject to the same ambiguity that the tumor biopsy is (they might hit micrometastases - or the stray cells might be hiding beyond the reach of the needle).

    I'll wish you the same luck I had - that everything comes back better than the pre-surgical predictions.

  • Nulyte
    Nulyte Member Posts: 62
    edited October 2016

    Thank you , that information was more informative than what I've received from my doctor and explains more to me, at least now I understand

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