what type of cancer if progression.

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liv-
liv- Member Posts: 521

hello,

think this might be a dumb question but im confused, doesnt take much these days!

im a ibc trip neg & if i was to have progression/mets,  will the mets still be trip neg inflammatory, say i progress to liver or bones is that too trip neg inflammatory?

xx

Comments

  • chrissyb
    chrissyb Member Posts: 16,818
    edited January 2013

    Hi Liv, the mets usually follow what your first dx was but it can change. The only way to tell is if the new tumour is biopsied and sent to path for testing.



    Hoping you never need to find out.



    Love n hugs. Chrissy

  • mandymoo
    mandymoo Member Posts: 815
    edited January 2013

    Hi Liv, Chrissy is right. The mets are usually the same however sometimes it can change. I was diagnosed with IBC December 2006. Are you a member of IBC support group (ibcsupport.org). Their website is very informative. EraseIBC is another helpful website.

    Mandy

  • liv-
    liv- Member Posts: 521
    edited January 2013

    thx mandy & chrissy ((hugs))

    yes i thought as much, what i was thinking if i did have mets and was NED in breast and had mets to say liver, which has nothing to do with estrogen.   got me thinking, would i be then able to take tamoxifen, then i was thinking, taking tamoxifen would only be beneficial to the positive receptor for breast cancer only & it would not help positives with their liver cancer, is that right? gawd im going around in circles!

    yes mandy i also get all the updates from IBC support group (ibcsupport.org).

    mzzz dizzzy giddy liv

    xx

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2013

    Liv,

    You're right about how complex this is! Just for clarity's sake, if you have mets, to any area, from bc then you still have bc, not liver cancer, bone or lung cancer etc. This is true even if the hormone receptor status has changed. Saying you have liver cancer, for instance, would indicate a new primary cancer rather than a metastasis.

  • liv-
    liv- Member Posts: 521
    edited January 2013

    thx exbrnxgrl ((hugs))

    yep i get it, still same breast cancer spread, mets.

    new primary cancer saying you have liver cancer rather than mets.

    xx

  • mandymoo
    mandymoo Member Posts: 815
    edited January 2013

    Yes, it is complicated. I was diagnosed with IBC in December 2006 and had the 6 rounds of chemo before mastectomy and lymph removal. They did a biopsy from that which indicated that the breast cancer was estrogen positive and progesterone positive, HER negative. After another 6 rounds of chemo and radiotherapy, I was then put on Arimidex for 5 years. After that - nothing.  Two months later, I requested a bone scan due to pain in right knee, however bone scan found bone mets to left femur and right skull. Based on that I was put on Aromasin which is also a hormone therapy but for stage 4, and the oncologist assumed that I was still Estrogen and Progesterone positive. However 6 months later I was put on chemo again as the hormone therapy definitely wasnt working. This makes me think that the mets may have changed and mabe they are not Estrogen positive anymore ???? The only way the oncologist can determine this would be for me to ask for another biopsy, which he is not keen to do yet. 

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2013

    Mandymoo,

    Complicated indeed! It's funny now but when I was first dx and started getting info about my biopsy, my first reaction was, "there's more than one type of breast cancer?" What a learning curve this has been. BTW, Aromasin is not just for stage IV. It is an aromatase inhibitor that can be used for ER+ bc at any stage.

  • liv-
    liv- Member Posts: 521
    edited January 2013

    mandy you poor thing, you have been around the mill. after all that time bloody mets to your bones.

    good point, it absolutely infuriates me when you have been through so much and they make you wait for a simple biopsy that could show so many different things. mandy be aggressive as you can because ibc is so nasty and you have every right to know exactly what is going on inside you and especially now with mets. its all about bloody money!

    assuming is not enough, your onc should have done these tests so you know you are getting exactly what you need and not to be told later, we should have done this.

    sorry for the rant it just makes me so angry that you are going through this and not completely sure/satisfied you are getting the correct treatment.

    from bloody bloody bloody

    ((hugs))

  • mandymoo
    mandymoo Member Posts: 815
    edited January 2013

    Thanks LIv, I only just wanted to make it simpler by explaining my story as I could realate it this way.

    I think that I am fortunate that both times that mets were found quite accidentally. First by requesting bone scan due to my sore knee which turned out to be arthritis, and bone mets were found elsewhere. So if I didnt have an arthritic knee (which incidentally was excasberated by Arimidex as it is no longer sore now), the bone mets would not have been spottedl. I had the worst cold back in September, and I think that I got the pleural effustion from that. I went into casualty in the public hospital complaining of shortness of breath on November 17th (but I was'nt sure, as I thought that maybe I was imagining it. I felt pretty good, but noticed that I couldnt walk as briskly and climb stairs like I used to, and maybe I was just not as fit as I was). Thank goodness the hospital took an X-ray, because all my vital stats were normal and ECG was normal as well. I had to stay in hospital for 10 days to get the pleural effustion drained and they took more tests which is when I kept getting all this bad news. 

    So if it wasn't for these 2 unrelated medical conditions, I might still be walking around with these mets and not know. They have been caught early and hopefully they will find something that will zap all these areas. 

    I have a fantastic relationship with my oncologist, and yes, I am doing as much research as possible, so that my next appointment, there will be lots of effective communication and discussion as to where we go next. Oh, I also ask for all my results to be printed out as I can't remember everything and then I know where I am at. 

    We are all fighting this nasty devil in our own individual ways and we are all warriors. I believe in technology and know that the cure for cancer is only around the corner. 

    This is a wonderful website, and I am truly grateful for communicating and venting and knowing that people here understand, because we are all in the same boat. 

    Mandy Smile

  • liv-
    liv- Member Posts: 521
    edited January 2013

    hoping so too mandy that technology is just around the corner.

    i also get my results before i see onc so im ready to fire all the questions at him.

    glad you do have a great relationship with your onc but even so make sure you get what you want/deserve, ibc is aggressive so we need to be also.  think sometimes onc's become a little complacent if we just go along with them.

    just like you have highlighted, if it weren't for your other symptoms, not relating to cancer that showed your mets and who knows how far they could have spread before your next scan.

    it was the same with me they had told me after my mastectomy that i couldnt have more chemo.

    had a really bad path showing only 0.3 clear margin, 17/24 nodes were bad, 10cm trip neg ibc. i was not happy with my then onc because i was wanting more chemo and she wouldnt give it to me so switched and at the same time had a blood clot, after scans showed nodes on chest wall were back and thankfully new onc gave me more chemo.  it just shows those nodes would have been sitting there for another 3 months before i would have had next tests, scans and would more than likely have spread to mets.

    feel sorry for my poor onc, when im there i tell him about all the new research i find and luckily he is very obliging and sits there and lets me get it all out.

     for your next appointment, our guard

  • mandymoo
    mandymoo Member Posts: 815
    edited January 2013

    HI Liv, I am glad you got a second opinion. I also got DVT in my leg when I was getting my chemo and radiotherapy after MRM (6 rounds before MRM and then 6 rounds after), however I had to forgo the last 2 rounds of chemo because I was hospitalised after each round of chemo and the last 2 rounds I should have been in intensive care.

    I think the oncologists like it when we do our own research for our own situation, and that we are interested in our results, and I like being involved in my treatment as well. I figure that they cannot know everything and keep up with the latest as they have so many patients with many different types of cancer and then varying types of mets as well. We also react differently to drugs, so if we print out our research and show them, it is a win/win for everyone. Smile

  • liv-
    liv- Member Posts: 521
    edited January 2013

    not that this makes any difference to what the cancer is going to do!

    From The American Cancer Society website

    "An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses.  A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed - information about the current extent of the cancer is added to it.

    For example, let's say a woman was first diagnosed with stage II breast cancer and the cancer went away with treatment.  But then it came back with spread to bones.  The cancer is still called a stage II breast cancer with recurrent disease in the bones.  If the breast cancer did not respond to treatment and spread to the bones, it's called a stage II breast cancer with bone metastasis.  In either case, the original stage does not change and it's not called a stage IV breast cancer.  A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it's first diagnosed.  A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current state of the disease.

    This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed.  The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer."

    So, if I understand the above correctly, one does not progress through the stages like grades in a school.  One does not become stage IV simply because one has developed metastatic disease.  What you are staged when you are first diagnosed remains your stage for life.  If you do develop distant metastasis, you don't "graduate" to stage IV, you remain at your original stage, with a qualifier added that says you, now, have metastatic disease.

    Questions: Does this mean that a stage II breast cancer patient who remains NED for several years before developing metastatic disease has a better survival outcome than someone who was stage IV out-of-the-gate?  Or are the statistics more favourable for a stage IV patient?  How important is this distinction?  How does it impact survival statistics, if at all?

  • mandymoo
    mandymoo Member Posts: 815
    edited January 2013

    Liv, surely that is a typo. Perhaps they mean the grade of cancer and not the stage of cancer??? now I am confused?????

    Cheers

    mandyUndecided 

  • mandymoo
    mandymoo Member Posts: 815
    edited January 2013

    OMG I just found it on their website, how bazaar!!!! I will print it out and discuss this with my oncologist. That does not make sense, but we are forever learning.Wink

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2013

    Interesting ,because in the real world, even oncologists do not say that a patient has stage II with recurrence to the... They all say stage IV when it metastasizes. Perhaps, by strict definition, the ACR is correct but that is not how the world of oncologists and their patients term progression (as far as I can tell).

    Caryn

  • liv-
    liv- Member Posts: 521
    edited January 2013

    in the end it doesnt really change anything but then again, treatments might be different and being able to join certain clinical trials depending on staging.

    too confusing for me.

    xx

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2013

    Liv,

    Treatment would not be different nor eligibility for clinical trials regardless of what one called it. If I said I had stage II with metastasis to the bones or stage IV with bone mets, it's still the same.

    Caryn

  • liv-
    liv- Member Posts: 521
    edited January 2013
  • ibcmets
    ibcmets Member Posts: 4,286
    edited January 2013

    First that I heard your stage remains the same if you metastacize.

    Terri

  • liv-
    liv- Member Posts: 521
    edited January 2013

    me too terri, we are complicated and so is cancer..

  • liv-
    liv- Member Posts: 521
    edited January 2013

    thx bon interesting,

    x

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