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New diagnosis IDC stage IV + lymph node

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lilygizmocat123
lilygizmocat123 Member Posts: 13
edited June 2022 in Just Diagnosed

I just got diagnosed with IDC stage 4 right breast and right armpit lymph node. They haven't biopsed the left breast yet but they want to asap! My question is isn't more important to see if the cancer has spread anywhere else in my body before the slightly suspicious left breast??

Its been really hard getting STRAIGHT answers from any of these doctors! They have a protocol they want to follow without and deviation! IF I find out it is in other parts of my body/organs that would greatly effect what treatment options I would consider or not consider?? Also if anyone else has IDC 4 please chirp in and let me know how long you've had it any information would be helpful!

Quality of life is more important to me then "quantity"

So I'm going to have some tough decisions soon! I realize once you make those decisions you can't really change your mind later! I don't want to be halfway through some treatment and regret my decisions ...at least thats my goal anyway! You don't get alot of "do-overs" with this horrific disease!! Thank you!!

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  • moth
    moth Member Posts: 3,293
    edited June 2022
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    armpit lymph nodes positive do not lead to stage IV diagnosis. Do you have mets somewhere else? Where are your tumors & what size?

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,070
    edited June 2022
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    As moth said, positive axillary lymph nodes are not considered stage IV. Metastatic bc would be spread to distant organs such as brain, lungs, liver or bones so it is unclear why you think it’s stage IV. Even women with numerous positive lymph nodes are notstaged as metastatic. Metastasis at initial diagnosis only occurs about 6% of the time. I know this can get very confusing and there is a lot of info being thrown at you but please double check as you may not be stage IV if only axillary node/s were positive. Even with nodal involvement, scans to check for mets areusually not done, especially in the absence of symptoms. IDC is the most common type of invasive bc. The majority of women on the stage IV forums, though not all, have IDC. Again please double check but positive armpit nodes are not stage IV. Also, if you are not satisfied with your MO's find new ones ASAP! It is important that you have a comfortable and mutually respectful relationship with your mo so you are not confused! Take care.

  • sondraf
    sondraf Member Posts: 1,631
    edited June 2022
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    Was there something suspicious in the left breast as a result of a breast MRI? Bilateral bc is fairly rare.

    However, your instinct to get further scans done is correct. Right now you are not Stage IV, but axillary spread would get you a ticket to a pelvic/chest CT and bone scan here in the UK. I had axillary spread and until those scans came back showing bone mets, was classed as Stage III. Doctors here also don't tell you anything, so if you are reading your results from a letter or something with no one to explain what is going on, it can be really distressing. I've been there.

  • gb2115
    gb2115 Member Posts: 553
    edited June 2022
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    Hi there, sorry to hear about your diagnosis. I agree with the others. If they are telling you that you're stage 4, please ask them for clarification if cancer has only been found in your lymph nodes. I have had lymph node positive cancer twice, and neither occurrence was stage 4. You're not considered metastatic until it's found beyond the nodes in other parts of your body.

    Hang in there.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,070
    edited June 2022
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    “My question is isn't more important to see if the cancer has spread anywhere else in my body before the slightly suspicious left breast??“

    I forgot to answer your question directly. If you were told that you are stage IV that means the cancer has already spread elsewhere in your body. Exactly where were you told you have mets and how were they discovered if you have not had imaging and/or a biopsy to the suspected site of metastasis? Metastatic disease is not determined by a breast biopsy.

  • lilygizmocat123
    lilygizmocat123 Member Posts: 13
    edited June 2022
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    Moth: I did NOT post every single detail of my diagnosis and I wasn't asking what everyone "thinks" I have. I have doctors. If you don't want to answer then don't but I'm not getting into a pissing contest into who has the most or biggest tumors! WTH? I didn't ask what MY diagnosis is?!

  • lilygizmocat123
    lilygizmocat123 Member Posts: 13
    edited June 2022
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    Its a very LARGE fast growing tumor i will say that!

    I'm going to shoot straight from the hip- they want to chemo me asap, at least one mastectomy maybe two right off the bat! They are pushing to for left breast biopsy before checking other parts of the body - I've got LARGE tumor right and I mean BIG and 4 other lymph nodes as of today ( that I know of) IF this has spread to lungs, chest, liver ect ect I do not see the point of them doing the double mastectomy and lymph node removal! I am currently fighting for them to check the rest of my body first! THEY keep diverting me back to breasts and lymph nodes only! IF it has spread more I would probably forgo the current plan they want! In my opinion its really just drawing out the inevitable! I wanted to know if this is typical?? Planning out the first surgeries BEFORE scanning my whole body?? Especially since its already spread to 4 lymph nodes. I personally think they know it HAS spread ( stage IV diagnosis) Even though a 4 can be bc of tumor size ( I don't buy it!) I think its in lungs! My guess is lungs and they saw it in all the mammograms, sonogram and ultrasounds I've had but they are hiding it from me! I've already said I don't see the point of all this chemo and surgery if it has spread so they KNOW what I'm thinking. Is this normal behavior??

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited June 2022
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    This is a difficult time for you but that's no excuse to be so rude to moth. She (and others) were asking relevant clarifying questions in order to better answer your question. If you don't trust your doctors and their treatment plan, the solution is to stop and get a second or even third opinion.

    Only the most horrible incompetent doctors would hide a Stage 4 diagnosis. If you think that's what happening, you need to get a new doctor ASAP instead of coming here and falsely accusing actual Stage 4 patients of engaging in pissing contests. We have no reason to do that. Don't take out your anger on anonymous people in a cancer forum.

    Edit: this was in response to the post that has now been removed by moderators.

  • wondering44
    wondering44 Member Posts: 261
    edited June 2022
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    lily,

    When I started here, I did not understand that metastatic did not mean stage IV, nor did I understand much about cancer. I have read and written posts where others asked questions to clarify the interpretation to assist in answering questions about the topic or to engage in the topic with a better understanding. Asking questions for clarification can help to alleviate miscommunications. The follow-up to Moth's questions reads (IMO) like a severe case of "road rage."

    I sat with my therapist regularly for the first six months of my diagnosis to help me deal with the stress of my dx and lack of cancer knowledge. Consider talking to a therapist to get through the initial hump of emotions that come with a dx. Another option is to talk to a physician about a prescription to help with the cancer rollercoaster ride. It is a doozy going up and down the first loop.

    The boards here have women who have a wealth of knowledge to share with other women about cancer. Moth is one of those women.


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,070
    edited July 2022
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    lily,

    Breast cancer is a lot to deal with especially early on. There is definitely a learning curve. That being said I agree with parakeetsrule's post. Understanding an individual's situation is an important factor on this forum. Breast cancer is more varied and complex than most of us knew so we often ask questions so we can understand a new members situation. You may not like everyone here but respect and kindness are free and don't forget, we all have breast cancer.

    I am still not understanding why you are stage IV. The imaging that you have had appears to be inconclusive but you believe you have an incidental finding. Is a lung biopsy in the offing? Thus far, none of what you gone through is typical of arriving at a stage IV dx yet you stated earlier that you are stage IV. I also doubt that any doctor would make a dx based solely on an incidental finding. My bone met was an incidental finding but was not a confirmed bc met until it was biopsy proven. Lastly, if you really believe that your doctors are deceiving you, find new doctors ASAP. We are happy to help you learn about bc but please be respectful to our members.

    PS: You mentioned that you think something was visualized in your lung during a mammogram. That would be impossible as mammos literally only see what’s pressed between the plates which couldn’t possibly involve your lungs or any other internal imaging. As far as the other MRI’s or ultrasounds, I can’t comment on those.