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How can someone jump from 1A to 4 quickly?

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  • mavericksmom
    mavericksmom Member Posts: 1,110

    Thank you Bessie, once again, very helpful!

    Could you clear up another question for me? Does my 7% also apply to new collateral cancer? My understanding is that breast cancer in the other breast is not considered a recurrence? I'm sure the AI has to help prevent that too, but I don't really know for sure.

    I also wonder why my schedule for follow up is the same as everyone else? I get so much anxiety over doctor appointments that the less I see the doctor's the better! They aren't going to find anything anyway. At my November appointment I am telling my doctor I will see her again in a year! Any time I ever had issues after my surgery in January I was always told to see my PC doctor.I would rather deal with him anyway because I trust him, the cancer doctors, not so much.


  • Mavericksmom,

    The Oncotype test only provides information about metastatic risk (i.e. a distant recurrence) related to the current diagnosis. Here is a copy of a sample report; I have noted in red where the report specifies that the results are specific to distant recurrence.

    image

    After a diagnosis of invasive breast cancer, we all face 3 risks:

    1. Distant/metastatic recurrence
    2. Local/in the breast area recurrence
    3. New primary breast cancer
    .

    Everyone's risk in each category is different. A small indolent cancer will have a low risk of distant recurrence whereas a large aggressive cancer will have a greater risk. The amount of risk directly influences the benefit from both chemo and endocrine therapy; the relative benefit from chemo and endocrine therapy will be about the same (for example, approx. a 30%-35% metastatic risk reduction from endocrine therapy) but the absolute benefit will be different. Someone with a metastatic risk of 9% will get approx. a 3% risk reduction from endocrine therapy whereas someone with a metastatic risk of 24% will get ~8% risk reduction benefit from endocrine therapy.

    Similarly, someone who's had a MX will likely have only a 1%-2% risk of local recurrence (this figure could be higher if the surgical margins were close) whereas someone who's had a lumpectomy + rads may have a 10% risk (or 5% or 25% - it depends on the pathology and surgical margins and even the patient's age). For local recurrence, endocrine therapy can reduce the risk by approx. 50%. For someone who's had a MX, this might only be a 0.5%-1% risk reduction benefit but another patient who has had a lumpectomy and has a 12% risk of recurrence (for example) would get ~6% risk reduction benefit.

    Then there is the risk of a new primary breast cancer. This one is even harder to determine, since it involves our personal history of breast cancer (which increases our risk to be diagnosed again), our family history of breast and related cancers and/or if we have an inherited genetic mutation, our biology (breast density, estrogen exposure, etc.), our environmental and lifestyles risk exposures, our age, and of course, the type of surgery we had previously - those who've had a BMX will face a lower risk of a new primary (but it's still possible) than someone who has had a UMX or lumpectomy. Here again endocrine therapy can reduce the risk by approx. 50% (the studies on this one are more variable than the studies on distant and local recurrence risk reduction benefit) but you have to keep in mind that the risk to develop a new primary exists for the rest of our lives, and as for all women, our risk to develop a new breast cancer is greatest when we are in our 60s and 70s. If someone is 45 when diagnosed and takes endocrine therapy for 10 years until she is 55, while this will cut in half her risk to be diagnosed with a new primary during those 10 years and for some time afterwards, there may be no effect from the meds by the time she is 65, when she faces her highest risk. That of course doesn't mean that she will be diagnosed again when she's older, but the risk is there, as it is for all women whether they've had breast cancer before or not. I am always surprised when women come back here, surprised that they have a new primary 15 or 20 years later. We are women, we have breasts (for those who haven't had a BMX) or some small amount of remaining breast tissue (for those who've had a BMX), we therefore have a risk of breast cancer, and this risk is greater as we age. The fact that we've been diagnosed before doesn't make us immune to another diagnosis. A recurrence after 15 or 20 years - yup, that's surprising. A new primary? Not so much.


  • mavericksmom
    mavericksmom Member Posts: 1,110

    Thanks again Bessie! Your information was so helpful, I pulled out my Oncotype paper to follow along.

    Another question for you, not sure you or anyone here will know the answer but I will ask anyway. When I had IDC in. 2003 the entire fat pad with 24 nodes were removed. This time no nodes were removed, obviously because the first tier were removed previously. I think they put it down as node negative on my Oncotype submission. Does breast cancer always travel first to nodes under arm? I know cells could have gone into blood etc. Is it correct to consider second primary to be node neg? I am assuming it is.

    Also, I was diagnosed with second primary same breast 15 1/2 years later because multiple doctors over the years told me I could consider myself cured! NEVER did any doctor tell me I could still get breast cancer, so YES I WAS in shock! Literally, when I got the call, at work, I said “ so you are calling me with the good news?” The RO was silent, then said how sorry she was...... My world crashed, I don’t remember what I said, I literally went into shock. I had to be driven home by a co-worker. I never thought I would ever get BC again. You may not understand but believe me, I will NEVER 100% believe anything a doctor related to cancer, BS or MO tells me ever again! My BS told me in August “ you are free of cancer!” I don’t believe him. I will always feel there will be another primary or recurrence no matter what I do.

  • letsgogolf
    letsgogolf Member Posts: 65

    Sounds like the doctors were correct and you were cured the first time. Since your cancers were different types it does not appear that you had a recurrence of the original tumor. Unfortunately, as long as we have breasts there is always a chance that we can get another primary, unrelated to the first cancer.

  • mavericksmom
    mavericksmom Member Posts: 1,110

    let'sgogolf, you missed the point! I give up. Sorry I was stupid, sorry I misunderstood the doctors, sorry I am a mess, sorry sorry sorry!!!!!!! Sorry I didn't have the benefit of a message board like this.

    I am so tired of apologizing/trying to explain my feelings. I give up.




  • Mavericksmom, I didn't see your most recent post and I notice you've deleted it and several of your other posts. That's unfortunate, because the value of this board comes from sharing our knowledge, our experiences and our feelings.

    No one should ever have to apologize for or explain one's feelings. We feel what we feel. Anger and frustration are reasonable and normal reactions to a diagnosis of breast cancer, and particularly a second diagnosis or recurrence (seriously, I am dealing with this again?) and particularly if you've been misled by your doctors about the risk. And yes, from reading this board for 14 years, I've learned that too often doctors do mislead their patients. Some doctors inflate the benefit of treatment, as a way to coerce a patient into treatments. Some doctors tell patients that they are cured, or that "they will never have to deal with breast cancer again", when there is absolutely no way that they can know this. Many doctors downplay the side effects of treatments or even tell patients that their side effects have nothing to do with the treatment. Most doctors under-estimate the risk that we all face to develop a new primary breast cancer after having been diagnosed a first time.

    If your doctors did not tell you the truth and misled you about your risks, that is on them and not on you. You have nothing to apologize for. And you have every right to be angry about it and to not trust them now.

  • lilliangish
    lilliangish Member Posts: 54

    Canadaliz, I liked your perspective on life after breast cancer. You are so right! I'd rather focus on doing something that actually reduces my chance of recurrence.

    Thank u for the oncotype explanation Beesie. One thing I wished my MO had done was order the Oncotype dx report. I had Mammaprint which said I was high risk....but barely. It didn't tell me the value of chemo and AI, the way oncotype does. I would have liked to know that. I also read that many of those deemed high risk on Mammaprint would have been intermediate on Oncotype. Intermediate would be a whole lot easier to live with. Still I had chemo and did all I could.

    Looking for a new MO for other reasons, but I wonder if they ever run oncotype dx after chemo, radiation? That ship may have sailed. Just makes it harder to let go of the recurrence worry. Not really sure what my chances actually are.

    I'm going to print Canadaliz' post when worry sets in. Thank you for that

  • meow13
    meow13 Member Posts: 1,363

    Lillian, you could call oncodx directly and ask them. Your mo would have to have your tumor sent. I think they are required to keep it so many years. I wanted a symphony test suite done on mine I think mammoprint was one in the suite. At the time my tjmor was 2 years old they said they thought too much time had passed.

  • muska
    muska Member Posts: 224

    This article in Time talks about the topics discussed on this thread. Time Article Today

    Editing to add: The author's book on breast cancer has very high ratings on Amazon, #3 in Oncology Books: Kate's book on Amazon