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Gray zones for everything

vibespright
vibespright Member Posts: 5

Hi,

I have a case that’s full of gray areas. I’m 51, pre menopausal, extensive LVi, multi focal, bi lateral, high ki67 of 54% but low oncotype of 18. I am considered technically node free but had some isolated tumor cells in node found in breast. None in sentinel nodes.


my situation makes all the doctors I’ve talked to give me different guidance. I have to make decision about chemo (4 said no, 3 said yes) ASAP. I’m just wondering if anyone else had been in this situation. What did you do!?

Comments

  • mandy23
    mandy23 Member Posts: 92

    Hi @vibespright !

    Welcome to the club no one wants to be a part of…..sorry you are here, but glad you found us.

    Yeah…lots of gray. Nice oncotype score though…that's good to see.

    Maybe more information will help others to advise. What size tumor? Grade? ER+ %? PR+%? Her2 status?

    Assuming you are hormone positive, the one thing I would want to to if it was me is somehow get to menopausal—-either by drugs or an oophorectomy—-or I think if you decide on chemo, that might do it also. That way you could take one of the AIs which have some improvement over Tamoxifen….especially since you are likely 'close' to menopause.

    I wasn't in your position….my oncotype was high, so no question this time, though my 1st dx was more of a grey area. That was 20 years ago though…so …. probably not too relevant in today's environment.

    Hang in there. Give us some more details and hopefully you will get some further thoughts.

    Take care.

  • vibespright
    vibespright Member Posts: 5

    Thank you. It’s Er/PR positive (strongly at 95%). And her - It was multi focal but largest was 2.8cm. Was grade 2.


    I am for sure going to do ovarian suppression plus AI. That’s the only thing people agree on. But you’re right. I could get there potentially through chemo too. Either way, AI. It’s just the chemo/not decision to make right now.

  • maggie15
    maggie15 Member Posts: 766

    Hi @vibespright , I was older (69) but in a similar gray zone: 3.2 cm, ER+ 90%/PR+30% /HER2- by FISH, grade 2/3 (2 different pathologists), 1/3 SN, LVI, single focus, close margins (<1mm but no ink on tumor), Oncotype 24 so no chemo recommended. The teaching hospital tumor board concluded no chemo, extra rads (nodes as well as whole breast) and AI; my MO said there was much debate. I went with the no chemo even though my surgeon was for it.

    It's tough to decide but I figured there are no guarantees either way and I can live with my choice no matter what happens in the future. If you feel you would regret skipping chemo if you had a recurrence then do it. Good luck with your decision!

  • vibespright
    vibespright Member Posts: 5
    edited November 2023

    @maggie15 Why did you do radiation? You did mastectomy right?

  • kaynotrealname
    kaynotrealname Member Posts: 346

    I think you'd have to figure out how you'd feel regret wise if you got a recurrence. If you know you would regret not having chemo if it comes back then do chemo.

  • maggie15
    maggie15 Member Posts: 766

    @vibespright I had a lumpectomy. In spite of the tumor size the surgeon used oncoplastic techniques so that I'm cosmetically close to even. If you're bilateral mastectomy will give you a more symmetrical result and avoid radiation. I needed WBR for the lumpectomy so they were a bit more aggressive with that to make up for skipping chemo. Lots to consider but do what feels right for you.

  • jrnj
    jrnj Member Posts: 407

    I was similar. 54 premenopausal Onco 15 ki 20 I think 2.5 cm ilc grade 2/3 lvi pleomorphic in 2 nodes 2mm and 3 mm. Rutgers said no chemo MSK said yes. I wanted to be aggressive so easy decision. I had CMF an older less toxic chemo. You didn’t say what type of cancer?

  • vibespright
    vibespright Member Posts: 5

    @jrnj it was IDC. And the chemo recommended is TC. And no doubt I’m more afraid of long term chemo problems right now than anything else. I’m not even sure that’s rational.

    the MO I trust and like the most says at best chemo would give me 5% benefit and that’s even rounding up into a situation Im not in (full node involvement). The absolute benefit that anyone can “guarantee“ is 1 to 2%. They are rounding up a bit because they think there might be some benefit because of all my gray zones.

  • laughinggull
    laughinggull Member Posts: 509

    Hi vibbespright,

    Sorry you are in this situation. What is the risk of recurrence/spread they estimate for you without the chemo? ie that absolute benefit you mention, 1 to 2% applies to which remaining risk?

    It is normal to worry about chemo side effects, that being said, is there a reason why you think you have a higher risk of severe side effects, or long term side effects? And do you think you would regret not having gotten the chemo, if and when your cancer comes back? Or do you think you would be at peace?

    I would take these factors into consideration in my decision

    LaughingGull

  • vibespright
    vibespright Member Posts: 5

    Hey @laughinggull thank you. Without chemo I have a 5% chance of metastis in 9 years per the oncotoype. Technically. That’s for node negative. I’m considered node negative but I do have isolated tumor cells in one node (breast wall not sentinel) which is like 1/2 step up from negative but not micrometasis nor positive. If I did have micromestasis or a positive node it would be a 16% chance of metastasis in 9 years. So I this way my MO says it, if we round up, it might be. 3-5% benefit of chemo but that would be generous.

    i don’t know why I’m afraid of the higher risks. I’m pretty healthy overall. I eat well, exercise often, am “young and strong” according to doctors. Probably cuz the whole idea freaks me out completely. Maybe I still can’t get my head around the idea I’m “sick”? And chemo would absolutely make me sick?

    I don’t like “if and when”. Let’s just stick with if. And if the cancer comes back i think I will just be pissed it’s back. I don’t know if I would spend much time beating myself for not doing chemo now. It’s a legit choice not to. I had 4/7 MOs say they wouldn’t recommend. It’s just the big ones MD Anderson, City of Hope and UT Health said consider it. But it’s just the should I not could I of this all that’s torturing me.