I have a date for my lumpectomy (plus my rant of the day)

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Kitchenwitch
Kitchenwitch Member Posts: 374
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Now that I have a date, my anxiety is ramping up. Of course today I found out it's going to be lumpectomy PLUS another biopsy. Very unhappy about this, but I think it's my best course, given that I just don't think I can do a second stereotactic core biopsy before the lumpectomy, and I don't want to jump ahead to a double lumpectomy. 

When does a person find out what the results of the Silverstein's Van Nuys Prognostic Index? Is that a result after lumpectomy, or should I have gotten it based on biopsy?

I've been to three breast surgeons and no one's mentioned it. I only found out about it here. I met a patient navigator today who was very anxious to help me with info. I just wasn't in the mood to ask any more questions, and I told her I'd call her, and that i was finding out pretty much everything I need online. "Well," she said, "Be careful. Not everything you find online is helpful or accurate."

Ugh, I can't tell you how much this disgusted me.  I successfully navigated a premature baby away from having a tracheotomy to a better medical course. I avoided having my colon resected and found a fanastic colorectal surgeon who helped me do that. I found out everything I needed to know about having a myomectomy (and made two lifelong pals). And I did it all online, managing to find reputable, dependable sites with solid information.

So thank you to everyone here who really has been so helpful with info... in some ways, more helpful than the medical pros I've dealt with (tho they've all been fairly nice and somewhat helpful). 

Wait, is this my second rant? Guess I'm losing track. Rough day. 

Thanks for listening... and if anyone can shed any light on the Van Nuys info, I'd be grateful! (Tho I'm pretty sure I am a candidate for radiation. I just want to ... know!) 

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited January 2010

    Oh, as a fellow internet user who finds truth and reliability if you dig deep enough and think, I appreciate your rant. Besides, bc.org home site is excellent for truthful information, so maybe you can tell her about it.

    As to the Van Nuys Score (tubules, nuclear grade, and mitosis, on a scale of 1 (least) to 3 (more) each (nine total), it's done on the lumpectomy or mastectomy specimen, not the core. In fact it's recently been found again to be pretty accurate in giving a handle on one's cancer aggressiveness, but doesn't of course say anything about important factors such as ER+ or HER+. I believe it's still routinely given on pathology reports.

    Sending good wishes your way for a safe and uneventful surgery and recovery,

    Tender

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  • mbordo
    mbordo Member Posts: 253
    edited January 2010

    VNPI is different than the other score which includes mitosis, nuclear grade etc... which is done by most pathologists...

    VNPI is a DCIS-specific index which is supposed to help decide who is more at risk for recurrence.  The following 4 areas are scored on a scale of 1-3 - grade, size of involved area, age of patient and margin status.  Scores range from a low of 4 to a high of 12.  My score was a 10, which tipped the scales for me to consider mastectomy.  You cannot calculate this until after a lumpectomy when you know the width of your margins.

    Search for "VNPI and Drs Silverstein and Lagios"  I consulted with Dr. Lagios in person and I was very impressed with his knowledge of DCIS pathology. 

    Good luck with your surgery!

    Mary 

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited January 2010

    As others have said, VNPI is designed for use after lumpectomy.  I tried to use it post-biopsy to make a surgical decision and sent an email to Silverstein asking him what he thought.  He replied saying the index was NOT to be used in that way. 

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  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited January 2010

    thanks, everyone. Good know I don't have info I'm not supposed to have yet! I'm pretty much counting on radiation. Though I had a shock yesterday, no one has said that skipping radiation is a possibility. 

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  • Bless
    Bless Member Posts: 141
    edited January 2010

    The "standard of care is radiation".  As I understand it the doctor must tell you that is recommended or risk being guilty of malpractice.  It is up to us to decide if that is the road we want to take.

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