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avidreader
avidreader Member Posts: 12
edited February 2017 in IDC (Invasive Ductal Carcinoma)

Hi everyone :)

In November 2016, the month I turned 33, I found a lump. I assumed it was a cyst, but it persisted and in December, I shared the finding with my husband, who insisted I should go to the doctor. After several re-schedules with the doctor's office, I finally got in and she wasn't too concerned, but scheduled a diagnostic u/s and mammogram anyway. I got a BI-RADS 5, but still felt optimistic that it was nothing. In hindsight, I should have known it wasn't very likely to be "nothing," but I wanted it to be nothing so I didn't fully pay attention to the cues people were giving me. They biopsied a slightly enlarged node and the estimated 2.5x2.7x2.6 cm lump. The node was clear (small victory), but the lump was positive for "invasive ductal carcinoma, moderately differentiated." There is a small amount of ductal carcinoma in situ present, but it seems like this makes sense since the cancer started in the duct, right? It's ER+ and PR+. My HER2 test hasn't come back yet, but we should know when I meet with the breast surgeon this week. The nurse said they won't stage it until surgical removal.

Anyway, when I asked what the best guess for treatment would be, the nurse said surgery and radiation with some sort of hormone treatment, but she can't say for sure. By my calculations, if all goes as planned, I'll have surgery at the end of March, maybe beginning of April, start radiation mid-May and be done at the beginning of July. This seems doable.

Everyone around me is fairly stressed about all of this. Before being told "Unfortunately, it did test positive for cancer," cancer seemed like something I'd never be able to handle, but I still feel fine/healthy/mostly-more-stressed-about-life-stuff, so "normalish". I can't sleep some nights, but day-to-day, I'm not worrying about it, for the most part, because I can't change it. I'm maybe more tired because I'm not sleeping at night, but the logical part of me knows this is going to be ok.

Anyway, what happens? Who makes the decisions on how this is treated? I have an appointment with a breast surgeon on Wednesday. Will the BS have a better idea if chemo will truly be avoided? Is there a "what to expect" post/list I've missed? I don't really know where to begin or what to do to make sure I'm in the best place emotionally/mentally and that I'm well-informed. I've been reading things online, but it just leads to more questions and I find an hour has gone by and I just have more questions - ha.

Thank you all for sharing so much information on these boards! It's been so helpful to read.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited February 2017

    Hi!

    What should happen before you make decisions is that you get your HER2 results back. If you test positive for an overexpression of the HER2 protein, you may end up doing chemo first, and then get surgery. You should also ask for genetic testing because that may impact your surgery choices. (Insurance should cover it because you are so young.) I would have had a double mastectomy if I had tested positive for BRCA, and would have had my ovaries removed.

    If you test negative for HER2, you will probably get your surgery first. After surgery, your doctors should send a sample of your cancer out to get an oncotype test. That test can help determine whether or not the benefits of chemo outweigh the risks. If you get a low oncotype score, you can skip chemo. You will make the choice about chemo, with the help of a medical oncologist (MO), not a surgeon.

    You may be able to skip radiation if you have a mastectomy instead of a lumpectomy, but then again, you may have to do radiation anyways. (I would have had radiation regardless of what surgery I chose.)

    A lot will depend on your pathology results from surgery; until then, you'll have to wait and see.

    Best wishes!

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  • avidreader
    avidreader Member Posts: 12
    edited February 2017

    Thanks so much, ElaineTherese. I feel like if I take each step, it doesn't feel so overwhelming. I'll be honing my patience skills, I guess.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited February 2017

    avidreader,

    By the way, if you're having trouble sleeping, you may want to ask for an anti-anxiety med that makes you sleepy. I have a small stash of Ativan on hand for those nights when I just can't sleep. I only take it if I've been tossing and turning and its midnight and I have to get up the next day for work.

    Hopefully, your BS will have the HER2 information at your next appointment. And remember, you make the final choice about any and all treatments! Don't be afraid to ask for a second opinion if you have concerns about the advice you get from any of your doctors. ((Hugs))

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  • Hopfull2
    Hopfull2 Member Posts: 418
    edited February 2017

    hi avidreader, so sorry your joining this group. But def as the other post said to make sure u get the her2 fish results back. And after surgery make sure they check what your oncotype score is. If your her 2negative the onco score will determine if u need chemo or not. Like I am stage 1 but still needed chemo due to a high score. Which meant I had a high reoccurrence without chemo. And it's your choice If u want a lumpectomy or mastectomy. For me mastectomy gives me more peace of mind and also means no radiation. God luck and keep us posted.

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited February 2017

    Avidreader, usually the oncologist drives the train. They're the ones who help you determine your course of treatment, based on your pathology results, age, family history, genetic testing, etc.. They will recommend chemo or radiation, plus hormone suppression (unless you're tumor is triple negative.)  In my case, the MO also recommended that I have a BMX and hysterectomy after I finished chemo, because of my gene mutations and strong family history of breast and uterine cancer.   But had I not had those mutations I would have had a lumpectomy, with rads.


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  • momand2kids
    momand2kids Member Posts: 1,508
    edited February 2017

    Hi there

    as others have mentioned, the oncologist really is the quarterback. It is important to point out that once you have all of your details--HER2 expression and oncotype score you will be able to make plan- and make decisions. You will have to weigh all of the information and decide on surgery type and treatment type. The oncologist should help you and give you recommendations. Second opinions are always a good idea. One step at a time... it is hard to be patient but it will all unfold for you as you gather your information.

    Best of luck!

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