Grade 2 DCIS and my difficult decision...to radiate or not?

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texgirl3
texgirl3 Member Posts: 3
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I am 42 years old. About 2 weeks ago, I had a lumpectomy to remove a .2cm, Grade 2 DCIS.  At my follow up appointment last week, my breast surgeon informed me that since this is a low grade DCIS, radiation is not completely necessary. She said that in a recent study, women with grade 2 DCIS who did not undergo radiation have a 10% risk of recurrence within 12 years.  My surgeon mentioned that since I was young, a radiation oncologist may recommend it more so than if I were older.  I have a meeting in about a week with my radiation oncologist to discuss options.  I know there are risks with radiation, but I know there are risks for not radiating.  I want to make an informed decision.  Thanks for any input anyone might have.  

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  • Beesie
    Beesie Member Posts: 12,240
    edited August 2013

    texgirl, there are many factors that influence recurrence risk.  One of the most significant factors is the size of the surgical margins.  Do you have a copy of your pathology report from your surgery, which would include reference to the surgical margins?

    One thing you might want to consider is a second opinion.  Many of the women on this board have used Dr. Lagios.  He's an expert on DCIS and one of the strongest proponents for avoiding rads, if it makes sense.  On the other hand, he will be honest and say when rads would be advisable.

    If you do a search on his name on this board (use the Search button on the left hand side), you'll find some of the women who've used him before and I'm sure someone can advise you on how to reach him.

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  • ballet12
    ballet12 Member Posts: 981
    edited August 2013

    Hi Tex, is it .2 cm (2mm) or 2 cm?  2mm is really tiny.  That may be why they are thinking you can forego radiation.

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  • texgirl3
    texgirl3 Member Posts: 3
    edited August 2013

    Bessie, thanks for your reply.  According to my pathology report, it states:

    Left breast, inferior margin, excision: DCIS present 0.5 cm from the resection margin

    Left breast, superior margin, excision: benign breast tissue

    Left breast, lateral margin, excision: focal atypical ductal hyperplasia 

    Left breast, medial and anterior margin, excision: benign

    DCIS largest focus measure 0.2 cm

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  • texgirl3
    texgirl3 Member Posts: 3
    edited August 2013

    ballet, thanks for your response.  It is actually 2 mm, which, yes, is very tiny.  However, I believe they removed a lot of the original DCIS in my initial stereotactic needle biopsy, so I would have to look at my reports to see what the original size was.  I do know for sure that it was less than 1 cm.

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  • SJW1
    SJW1 Member Posts: 244
    edited August 2013

    Texgirl,

    One thing to keep in mind is that you can only use radiation once. That's why I opted out of using it in 2007, after consulting with Dr. Lagios, who is a world renowned DCIS expert and pathologist, with a consulting service that anyone can use.

    Using the Van Nuys Prognostic Index, he calculated my risk at only 4 percent without radiation. I didn't think the typical 50 percent risk reduction that radiation has (only 2 percent in my case) was worth the risks involved in my case.

    You can also calculate your risk without radiation using the newer and less tested, plus more expensive Oncotype DX test for DCIS.

    If you want to contact Dr. Lagios or if you want to read more of my story you can PM me or check out my story on my website: http://dciswithoutrads.com/

    Best,

    Sandie

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