chemo or no with micro metastasis

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Confetti
Confetti Member Posts: 7
edited December 2023 in Newly diagnosed
Recent mastectomy with aesthetic closure, one mini slash micro metastasis in one lymph node, hormone positive at 90% and no chemo? Only a 2% chance of it adding anything to my 10 year rates? I keep reading everyone has chemo with lymph node involvement… just a wee bit concerned I’ve made the right choice? Thankyou.
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  • arpie
    arpie Member Posts: 7,574
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    SO sorry to see you here, @confetti ..... Hmmm, To be honest, I think maybe you maybe could ask for a 2nd opinion ....I know that if it was me, even ONE  'positive' would be 'one too many' for me ..... unless they can back up their decision not to have chemo with proven data ..... 

    Your profile is 'private', so we are unable to message you 'privately' .... You may like to reconsider this xx

    take care & all the best for your ongoing treatment xx


  • Confetti
    Confetti Member Posts: 7
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    Thankyou @arpie i think I’ve been able to change my profile, unsure.
    the reasoning was only her2 and triple negative BC really needs chemo and stage 2 hormone positive benefits hormone treatment. I’m pretty sure I’m the only person I’ve heard of or read about with even small node involvement not having chemo. My surgery was over four weeks ago.
  • iserbrown
    iserbrown Member Posts: 5,552
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    Is the advice from the Breast Surgeon or Oncologist?
  • Confetti
    Confetti Member Posts: 7
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    Oncologist 
  • Afraser
    Afraser Member Posts: 4,371
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    If you have any doubts, seek a second opinion but bear in mind it’s a qualified, experienced opinion, not gospel. Every medical practitioner relies on both training and experience and neither will be exactly the same. I had a mastectomy with one clearly malignant lymph node, my cancer was also hormone positive. My surgeon said maybe no chemo but that’s up to your oncologist. My oncologist (and yes, the two work together a lot) was in no doubt about recommending chemo (6 months). My choice, of course, and very few treatments are identical, but like @arpie, the ‘small percentage’ of benefit does matter depending on what side of the ledger you are on! A second opinion may settle your uncertainties. Best wishes.
  • arpie
    arpie Member Posts: 7,574
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    What was your pathology result @Confetti?   Which type of cancer was it? Was it invasive or not?  What Stage/grade?

    What is your 'general' area,  Town/state?  If you are in a larger town/city, there should be quite a few Oncs that you can choose from, less so if you are in regional/rural areas  .... (You can add your town in your profile) and members may be able to message you (well done on making that available!) with Oncs in your area that they are happy with ....

    I changed my Onc very early in the piece, as he was not at all supportive of me or listening to my concerns ... I am VERY happy with my 2nd Onc & have been with her for 5 years now.

    take care xx

  • Confetti
    Confetti Member Posts: 7
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    Invasive Ductal Carcinoma, grade 2, 2.1 mm tumor, Mastectomy with lymph node biopsy. Biopsy found micro metastasis in lymph node. Not sure on rads until next weeks appointment, currently starting zoladex and Aromasin? My Ki67 was under 10 I believe. ACT currently, sadly I think my window is pretty much in the days category.
  • arpie
    arpie Member Posts: 7,574
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    We have lots of members in Canberra ....@lrb_03 is one ... 

    For peace of mind I, personally, would get a 2nd Onc opinion as your BC was invasive. 

    Are you Her2- as well as Est/PR+? 

    take care xx
  • Confetti
    Confetti Member Posts: 7
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    The her2 come back as equivocal first as it was only 2+ which is a negative clinically, so it’s her2 negative. 
    I think I’ve got no real time to get a second opinion as every appointment has taken me weeks to get, and from what I was told I’m in the very last days of being able to even pursue the chemo.

    The hormone therapy is supposed to be the front line for the highly positive BC I was told, but I’ve searched this forum high and low and I just can’t find someone who has had a lymph node positive and not had chemo. 

    It’s hard to feel okay with your choice when no one has shared your experience. It’s an isolating feeling. Which I hope if someone has this experience like me they can search this forum and try and find some comfort. 
  • arpie
    arpie Member Posts: 7,574
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    Have you been assigned a Breast Care Nurse?  You could ask them about it. 
    Maybe also raise the issue with your Rad Onc when you see them? They may be able to explain it  better.  
    Or even ring your Surgeon's office tomorrow & explain your dilemma .... they may be able to get you in to see someone else quicker ....  The Onc would have sent their report to your surgeon already, too.

    I really think you need to fully understand why the Onc has made this suggestion - and only another Medical Onc can do that for you.
  • Confetti
    Confetti Member Posts: 7
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    Thankyou @arpie I appreciate your responses, yes on the BcN but not really heard anything and they tend to be more involved if you are a public patient. Seeing the Rad Onc late this week, the Onc also doesn’t believe the Rad Onc will suggest a need for Radiation either. My Surgeon honestly kept saying everything was +/- and seemed like my cancer was so early that my needs were minimal…but my pathology doesn’t look like it’s early nor minimal. So in essence I was just posting to see if there’s anyone at all in a similar place as myself. Or similar treatment plan.
    It’s just hard when you feel like you are the only one. Thanks for you help.
  • iserbrown
    iserbrown Member Posts: 5,552
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    @Confetti
    Sorry to read you're so perplexed.  Treatment plans are individual so you may struggle to find a comparison. 
    Your upcoming appointment, Rads?  may give you clarity 

    Take care
  • Cindi
    Cindi Member Posts: 133
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    Hi Confetti,

    I'm so sorry for you, you must be so stressed.

     If it was me I'd INSIST on at least an opinion of another expert.
     Can you could talk to your GP ? ( even either a phone call or appointment)and don't hold back on expressing your concerns and stress over it all, and hopefully they  could push for a quick appointment with someone else for you? for another opinion.

    GP's are better at getting you in quicker with the specialists, I've found.

    That's just me, but I feel sticking up for what you want is important. It's your illness, not theirs, you should be allowed to feel satisfied with what's planned for your treatment.

    I don't think it's fair.

    Hugs,
    Cindi xx

  • cactusk
    cactusk Member Posts: 52
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    Hi @Confetti
    i too am ER+/PR+ HER2- 
    I had a lumpectomy & 2 sentinel nodes removed, both showed activity 
    1 micro metastases & 1 macro
    Rad onc wanted to do a 2nd surgery, surgeon said no. I also have ‘multiple foci of lympho vascular invasion’
    I had a very long appointment with my med onc & her resident on Thursday, we’ve decided to do the oncotype DX to make sure chemo will be the best way.
    I know that 5 weeks (estimated) of radio will happen either with or without chemo
    has the genome test been discussed with you?
    I was sure that I’d need chemo given the lymphatic Mets but it’s now wait & see what the oncotype says.
    realise this thread is a few weeks ago now - hope you’re doing ok with where your treatment is right now?
    you are not alone x
  • Rowey
    Rowey Member Posts: 37
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    Hi @Confetti. I see that your post was a little while ago and you may have more answers now but thought I would share my experience. I was diagnosed with stage 2 lobular carcinoma last year. I had a mastectomy with sentinel node biopsy and axillary sampling. The pathology showed “a few isolated cells” in the sentinel node group but nothing elsewhere. My oncologist said that this is considered node negative. Therefore chemo would not be of any benefit. I think less than 1% was mentioned. Nor did I need radiotherapy after my case was discussed at multi disciplinary level. I am on hormone blockers only. Sometimes those few little words about isolated cells are in my mind but I trust my team and feel ok with what has happened. My pathology may not be the same as yours as “micro and macro” were not words that were mentioned to me, but I thought this might help. 
    Hope treatment is going well for you