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Re: How to know Mets or when to do more exams?

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Hi everyone,

I am writing this post on behalf of my mom. She is recently diagnosed with invasive breast cancer on February 11, lump size 1.3cmx1cmx1.3cm. Grade 2, ER+/HER2-. She is 58 years old and choosing bilateral mastectomy without reconstruction. The surgery is scheduled on March 11, 2022.

We have met with our nurse and surgeon twice. Here are a few key points during our conversation:

1. I specifically asked the nurse if my mom needs bone scan or full body ct, she said ultrasound did not show any abnormal lymph nodes as of now so there is no need to order that. This was later confirmed by MRI that no abnormal lymph nodes were present.

2. I asked the surgeon if it is possible that the cancer spreads to her chest wall or lungs before it spreads to lymph nodes. The surgeon said that it will be extremely rare since lymph node is generally the first place for the cancer cells to go.

3. the nurse said although the final pathology report will decide Stage and other info, by her experience this should be stage 1 cancer.


We are staying positive now. But I have a few questions as follows:

a. Does anyone hear or have any experience that breast cancer spreads to other parts of body without showing any abnormal lymph nodes near the breasts in the beginning?

b. Will the final pathology report decide if mets have happened or any need to order more tests?

c. After the surgery, my understanding is that we will be referred to an Oncologist from our surgeon. Should I push for a chest CT scan or brain MRI or bone scan if they do not order them? Based on my limited google study, my understanding is when someone have mets symptoms that's generally too late. Will the Oncologist order more tests in the follow-up appointments after the surgery? What are generally included in these follow-up visits? (my current thought is that at least we need a chest CT, if the hospital doesn't order it, we will go to a private clinic and pay out of our pocket)

Sorry for writing a long post like this. Thanks for reading this post! Any thoughts will be greatly appreciated!



Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,761
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    The beginning and the questions that come with it are a whirlwind. I can answer some of your questions but bear in mind that every bc patient is different (I was stunned when I first learned of the incredible number of variables that a bc diagnosis can have). Additionally, not every oncology practice approaches treatment the same way.

    - Lymph nodes do not always show up as positive on imaging. Since your mom is having a mx they will likely take sentinel nodes (SNB) so that will be the final word on node involvement. It is also possible for bc cells to travel through the bloodstream. However that is not a likely scenario.

    - The final pathology report will be an analysis of tissue removed during surgery and results of the SNB. It would have nothing to do with metastasis. Even if one or more positive nodes are found that does not indicate metastasis. Metastasis is determined by different means, commonly imaging of the area of suspected mets and biopsy if possible.

    - Regardless of when mets are found, symptomatic or not, it is theoretically too late. There is no cure for metastatic breast cancer. Some of us live longer, many of us don’t.

    As for imaging such as scans or CT’s that may depend on her final staging as routine scanning may not be recommended for an early stage diagnosis. It is not likely that your mom has any metastasis as this only occurs in about 6% of the newly diagnosed. Try not to go to places you may never need to be!

    If I can give a tiny bit of advice… Try not to get ahead of what you know. Focus on what you know now. There is little reason to be thinking metastasis at this point and it may just add an extra layer of unneeded worry. Take care

  • beesie.is.out-of-office
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    Welcome!

    So, the first thing to understand is that if a breast cancer is early stage and there is no reason to suspect metastasis, usually no testing for mets is done. Why? Because these tests only find mets above a certain size, and someone with an early stage breast cancer and no symptoms is extremely unlikely to have mets that are large enough to be detected (and yes, there are exceptions, some of whom may post here). If there is anything out there in the body, it's almost certainly microscopic, and no test in the world will find it. For this reason, with most early stage patients, testing for mets is not done at any stage of the process, either during diagnosis, treatment or post-treatment, unless there is a symptom.

    A couple of years after my diagnosis, when I had persistent hip pain, because of my breast cancer history and because mets to the hip is not uncommon, my MO (Medical Oncologist) ordered an x-ray. My pain was arthritis, as we'd suspected, but my symptom of hip pain led to imaging. That's the only testing I've had for mets. I have had imaging done for other reasons that have detected lesions that had to be investigated further solely because I am at risk of mets - all eventually were deemed to be benign. That's another issue with unnecessary imaging - most of us have some stuff going on internally, and these scans lead to lots of false positives that in turn lead to more testing and more stress.

    So to your questions:

    a. Does anyone hear or have any experience that breast cancer spreads to other parts of body without showing any abnormal lymph nodes near the breasts in the beginning? Yes, that happens. That is the risk that all breast cancer patients face.

    b. Will the final pathology report decide if mets have happened or any need to order more tests? No and Maybe. If the diagnosis is early stage and there is no physical evidence of mets, the staging will assume M0, i.e. no mets, but that's not based on the pathology, which only looks at the breast tumor and breast nodes. No tests will be done for mets. However if the pathology shows a more advanced cancer (and therefore a greater chance that there might be detectable mets), the MO may suggest additional scans.

    c. After the surgery, my understanding is that we will be referred to an Oncologist from our surgeon. Should I push for a chest CT scan or brain MRI or bone scan if they do not order them? Based on my limited google study, my understanding is when someone have mets symptoms that's generally too late. No, your mother should not push for additional scans if they are deemed to be unnecessary. Your mother should get a doctor she trusts and she should trust her doctor. And yes, when someone has symptoms of mets, the disease is no longer curable. Stage IV metastatic cancer is treatable but not curable. But this is equally true if someone has mets that are so tiny that they are asymptomatic and undetectable by screening. Once there is mets, the cancer is not curable. The systemic treatments given, whether endocrine therapy or chemo, are targeted at tracking down and killing any rogue breast cancer cells that might have escaped the breast, either undetected through the lymph nodes or through the bloodstream, and moved into body. The objective of these systemic treatments is to kill off these cells before they can take hold and develop into mets.

    The NCCN Treatment Guidelines are the gold standard guidelines used by most MOs:

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    By the way, does your mother know that you've posted this? We'd love to see here her. Most of us are in her age group. What is the role that she's asked you to take with all this? We want to be sensitive both to your needs and questions, but also to her's.



  • palake
    palake Member Posts: 11
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    To exbrnxgrl: Thank you so much for your reply. The surgeon does explain to us about SNB. We will stay positive and focus on surgery preparation.

  • mountainmia
    mountainmia Member Posts: 857
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    At first, it was hard for me to fathom that more testing wouldn't be done. How could they possibly know I didn't have more cancer elsewhere in my body? But after reading here a bit, and seeing clear, calm answers such as those above, I understood that more scans would not be done unless I had symptoms.

    That said, since treatment I've had a head CT and chest xray (to check for problems after I had an unrelated fall), a lower GI xray and upper abdominal ultrasound (because of digestive problems), and a pelvic xray (because of pain, expected to be and diagnosed as soft tissue strains). And after each of these, I've been relieved that there was no sign of mets. My medical team is thorough, and they are checking for issues as they come up, but there is no point in looking for trouble.

    I was 58 when diagnosed 3 years ago TODAY. While we're always glad to interact with caregivers, please do encourage your mom to join us as she has questions, wants support, or wants to share some of the absurdities of her life as a cancer patient.

  • palake
    palake Member Posts: 11
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    To Beesie: Thank you so much for your reply. We finally understand the logic behind these exams. We trust our doctors and will be reasonable about any additional exams as per your suggestions.

    The reason why I am posting on behalf of my mom is that she does not speak English well and all the English medical terms are difficult for her to understand. I was just reading your reply to her in Mandarin Chinese and she almost cried when she saw you and exbrnxgrl posted such detailed responses to our questions. I have been with her for every medical exams and appointments so far (from her very first mammogram to biopsy to diagnosis to MRI and every communication with hospital due to language barrier). Thanks for caring for her/our needs and questions. Much appreciated.

  • palake
    palake Member Posts: 11
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    Thank you MountainMia. This community has helped us a lot even though this is my very first post. My mom also has access to this account and she just needs me to post for her as she has some language barriers.

  • mountainmia
    mountainmia Member Posts: 857
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    PAL, thanks for helping her with this. I work with a number of foreign-born adults. They are smart and strong, and they work very hard at learning English. Please tell her we are pulling for her.

  • beesie.is.out-of-office
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    PALake, I'm glad that you are able to translate the answers here for your mother. We're here for any questions you or she have.

    Good luck to your mother with the surgery. Hopefully there are no surprises (or only good ones!) and her final diagnosis is a small early stage cancer. Is your mother being treated in the U.S.? If so, then after surgery her MO will probably order an Oncotype test, which studies in detail the genetic make-up of the cancer cells, and from that determines the aggressiveness of the cancer. Based on her Oncotype score, the MO will either recommend anti-hormone therapy alone or chemo followed by anti-hormone therapy.


  • palake
    palake Member Posts: 11
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    Thanks again Beesie, we are in Toronto Canada. I have learned Oncotype score in some other posts here. We are not afraid of Chemo, if the doctor thinks it’s necessary, we will do it.

  • beesie.is.out-of-office
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    Hey, I'm in Toronto too! Waving Hi!

    Where is your mother being treated

  • palake
    palake Member Posts: 11
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    Hi Beesie, wow we are in the same city! My mom was initially referred to Princess Margaret and she is going to have surgery at Toronto General Hospital.

  • beesie.is.out-of-office
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    PMH and TGH are both part of University Health Network so if you go to one, your doctors and surgeries and imaging might be at the other - all the doctors work together and have operating privileges at both hospitals. Although Mt. Sinai is not part of UHN, they are right next door to PMH and are actually connected underground, and also share some resources and doctors, so a patient might even end up there for some things. My breast surgeon was at PMH, my plastic surgeon was at TGH and I've had MRIs and nuclear injections (the procedure that is done just prior to surgery to do the sentinel node biopsy) at Mt. Sinai. My surgeries have been at both PMH and TGH.

    Your mother is in very good hands! Let me know if I can help in any way.

  • ssb110
    ssb110 Member Posts: 2
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    Immediately after diagnosis I had a chest, abdomen and pelvic CT, and a bone scan to look for Mets. At that time everything was normal. After chemo and lumpectomy I had a CT to prep for radiation which showed a liver lesion. I now have liver (abdomen) mri’s every 6 months to watch it because it is in a location that cannot be biopsied. It’s stressful! It is also stressful that every ache and pain, back, hip, headache etc..lead me to think that I have metastasis. I find it strange that pet scans aren’t done yearly. But I guess the research shows they aren’t necessary.