Confusion

HuntingtonNY
HuntingtonNY Member Posts: 31
edited March 2015 in Surgery - Before, During, and After

Greetings. . .

The last 2 weeks feel like a year. Yearly mamo was odd, core biopsy results came in yesterday. ER staining 90%, PR staining 75%. OK I understand that. High grade DCIS with comedo necrosis and calcification. P63 actin stains confirm the absence of invasive component. I can't find anything referring to "comedo necrosis".

Lumpectomy on the 6th. I was OK with that, but the surgeon called and said I will probably will have to have radiation and probably chemo.

YIKES!

IF anyone has had a hard time getting a handle on their experience please touch base. I keep thinking I understand then not so much.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    it is fairly standard protocol to get radiation with a lx, and chemo with a mx.

    DCIS, Non invasive sounds like not the most terrible dx. But, there's no real safety in numbers. You are very wise to have read your own path report. Learn as much as you can. Lurk around in the surgery and radiation threads.

    I don't know about the comedo necrosis. If chemo is even a possibility, start researching and have a consult now with a medical oncologist. He or she is the one you will have the long term relationship with. DEFINITELY pick one who will order a test called the Oncotype dx which will be the strongest piece of evidence you will get to help you and your doc decide on chemo. Call your insurance company and find out if they'll pay. Medicare started paying for it a couple of years ago, it's expensive, like $4K, so most private insurance has followed suit.

    There is a lot to learn. You can get most everything you need to know from your docs, but going into your appointments having done your homework will start your relationship off on better, more efficient footing. Use this site, and keep away otherwise from Dr. Google. Ok? A big hug to you. Katy

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  • HuntingtonNY
    HuntingtonNY Member Posts: 31
    edited March 2015

    Thank you so so much for the help.....you have given me a huge hand.

    I expect to be a walking encyclopedia in the next month!

    best wishes


    M

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  • canadiancampmama
    canadiancampmama Member Posts: 22
    edited March 2015

    Kayb what a great explanation!

    HuntingtonNY I truly understand how you are feeling . My lumpectomy is tomorrow, but then I have a 4 week wait for the results. Only then will I know what comes next. This is a great place to learn and find support . May I suggest checking out the main DCIS Boards Lots of good info to get you started.

    Best to all

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    a wonderful and instructive response, Kayb. I know you're not being contrary. It's vitaly important that we get it right here and not spread incorrect info. For the record, I was parroting what my bs said to me. I stand corrected.

    And good luck tomorrow Canadiancampmom! Smooth sailing

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  • HuntingtonNY
    HuntingtonNY Member Posts: 31
    edited March 2015

    I hope the surgery had no surprises . . . . sending good energy your way !

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  • HuntingtonNY
    HuntingtonNY Member Posts: 31
    edited March 2015

    Here's a new twist. I was poking around thinking of where to get a 2nd opinion and discovered that my insurance covers Sloan Kettering treatment 100%. There is a branch near my home town, around 3 1/2 hrs away. The drive doesn't bother me.

    I was going to have the lumpectomy here where I live now, then go to for the treatment options downstate at Sloan. Does that make sense?? I will talk to my gp about this but does anyone have a similar experience?

    ps ~ I work in a library so research is in my blood. . . . .

    M

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  • HuntingtonNY
    HuntingtonNY Member Posts: 31
    edited March 2015

    Forgot to ask . . . . Is the HER test done at the lumpectomy? It wasn't done at my biopsy.

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  • canadiancampmama
    canadiancampmama Member Posts: 22
    edited March 2015

    Thanks for the well wishes I'm home from surgery, resting well. No pain just a bit of a pinching.

    Surgery wasn't as smooth as I would have liked but that was due to underlying health issues.

    For anyone wondering YES you will pee bright blue after the SNB hehe

    Not sure about the USA but here in eastern Canada er/pr and HER testing is only done on the path report.

    Now to wait until April 21st for the results.

    Heather

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2015

    huntington - Her2 testing is often not done for DCIS, and would likely not be done on your lumpectomy tissue as long as it remains pure DCIS.  If they do find an invasive aspect they would test that part of the lumpectomy tissue for Her2.

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  • yoga_girl
    yoga_girl Member Posts: 234
    edited March 2015

    Lumpectomy vs. Mastectomy - paving the way for how we treat breast cancer

    Anchor Katie Couric interviews Ken Burns and Siddhartha Mukherjee, MD, who wrote the Pulitzer Prize-winning book, discuss how one doctor’s defiant hypothesis paved the way for how we treat breast cancer.

    The new documentary film “Cancer: The Emperor of All Maladies,” a six-hour, three-part film series airing on PBS March 30, 31, and April 1, 2015 tells the story of cancer’s complicated past and the doctors who questioned convention in search of a cure.

    Today, about 60 percent of women diagnosed with early-stage breast cancer choose to undergo lumpectomy surgery followed by radiation as their course of treatment. 

    It’s a choice that was hard-won.  The most common procedure to treat invasive breast cancer in America was once the most controversial surgery in the medical community.

    Watch the video and read the full article:
    http://news.yahoo.com/cancer-emperor-of-all-malodies-cancer-s-most-controversial-surgery-221909086.html

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  • HuntingtonNY
    HuntingtonNY Member Posts: 31
    edited March 2015

    Heather I'm glad you aren't in a lot of pain. Thanks for explaining the different test for differing diagnosis.

    The details are so complex. So much to learn.

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