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Post chemo and still have cancer cells

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mommck3
mommck3 Member Posts: 1

hi- hoping someone might have advice on what I should push for next. I’m 42 and just finished a summer of DMX and 4 cycles of TC chemo. I had stage 2A IDC grade 3, onco 17,and extensive LVI (lymphovascular invasion). I’m now heading into hormone therapy stage with Lupron shots and AI drugs.

I went to a naturopathic oncologist to determine how to supplement my treatment naturally. He ran a test to determine if I still had breast cancer cells in my blood. Well, I do, it’s a low rate of them but they are there.

I’m wondering if this means I should have done more chemo? Or should I be looking into ways to “clean” my blood? I have no idea but grade 3 means they grow aggressively so I’m trying to get ahead of developing further.

Also does this put me in stage 4 versus 2A?

Thank you!!

Comments

  • WC3
    WC3 Member Posts: 658
    edited September 2018
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    mommck3:

    Have you talked with a conventional oncologist about this? When I asked mine if people ever had more than the standard 6 infusions of my chemotherapy or had any after surgery (I am having neoadjuvant chemotherapy...chemo before surgery) she said sometimes in instances where there is remaining cancer.

  • lexica
    lexica Member Posts: 138
    edited September 2018
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    hi, mommck3 - I'm wondering what test he did for you? Was it the circulating tumor cell (CTC) test? I had neoadjuvant chemo as well, and there was a lot of tumor left after my mastectomy, and some remaining in lymph nodes. I pushed for extra chemo and went to Hopkins for a second opinion, and everyone says with hormone positive, that your hormone therapy is more likely to be effective. So I'm on hormone therapy. I did the CTC test (on my own, bc my provider could not do it), but mine came back negative (prior to starting AI). I know the ctDNA test is more sensitive, and I plan on doing that one in about 6 months. I might suggest trying the hormone therapy and repeating the test in 3-6 months? Also, I agree with WC3 that you should discuss with an oncologist and possibly seek a second opinion. Good luck and let us know what you decide.

  • NotVeryBrave
    NotVeryBrave Member Posts: 169
    edited September 2018
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    I'm a little suspicious of tests like these that conventional oncologists don't do. It seems like if it was a reliable test with relevant information then it would be a part of standard care.

    What does the doctor that ran the test want you to do? Does it change their plan of care? Or are they only consulting?


  • meow13
    meow13 Member Posts: 1,363
    edited September 2018
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    The AI drugs you are taking should kill remaining cancer.

  • avag
    avag Member Posts: 15
    edited December 2021
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    My naturopath ordered a Biocept CTC and is came back that I had 7 CK- (no CK+ tumor cells) after chemo. I was distraught, but she assured me that these are not metastisized cells and that I could get them down to zero. We are doing the test again in January. What was your expereince?

  • VioletKali
    VioletKali Member Posts: 97
    edited December 2021
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    You can never get them down to 0. We cannot kill the tumor stem cells, this is why recurrence occurs. They say nearly everyone with cancer has circulating tumor cells.


  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited December 2021
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    It's normal to not have a complete response to chemo. Not ideal, obviously, but normal. And even if it appears that someone had a complete response, there can still be undetectable cancer cells lurking about. No one can ever guarantee or prove they are all gone.

  • elle2
    elle2 Member Posts: 57
    edited January 2022
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    I have heard, more than once, about naturopathic doctors running a type of body scan to “determine” if you have cancer cells. The two issues I have with this is 1) if it is so accurate and diagnostic why aren’t all cancer hospitals using this method, and 2) they claim to be able to get rid of the cells, but don’t actually say what they can do if they find an actual tumor. Those are two reasons why, in my humble opinion, you should be looking at a second opinion from a traditional oncologist. I wish you well in finding your answers

  • spookiesmom
    spookiesmom Member Posts: 8,173
    edited January 2022
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    Sounds like this “doctor “ wants you to take a bunch of supplements that will do nothing except lighten your checkbook and increase his.