DCIS and Double Mastectomy Follow Up Care

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cinnamonsmiles
cinnamonsmiles Member Posts: 779
edited June 2014 in Comments, Suggestions, Feature Requests

I was looking for standard of care for follow up treatment for DCIS with a BMX. I have read bc.org's information on it. Do the suggesitons written, apply to a lumpectomy, lumpectomy plus rads, BMX, and a BMX plus rads?

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2012

    cinnamonsmiles, you'll find more information about Lumpectomy, and about Lumpectomy with Rads, starting at this link. For information about Mastectomy, and about Mastectomy with Rads, begin at this link.

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited November 2012

    Mods,

    I looked at those links and there is absolutely nothing written about follow up care for those with DCIS and had a double mastectomy. The information I am referring to is:

    Follow-up Care for DCIS

    Last modified on September 17, 2012 at 6:56 pm

    Leer esta página en Español

    After surgery and radiation therapy, you and your doctor will work together to develop a plan for your follow-up care. If you had a mastectomy and are undergoing breast reconstruction, you will have a series of office visits to check on your healing. If you are taking tamoxifen or another form of hormonal therapy, this usually continues for a period of about 5 years, so your doctor will want to monitor you throughout that time.

    Although follow-up care plans can vary from person to person, your plan is at least likely to include:

    • a checkup and physical exam by your doctor every 6 to 12 months for 5 years and then once a year after that
    • a mammogram every 12 months and possibly other screening methods depending on your doctor’s recommendations

     

    I am sure there is a difference between follow up care for DCIS with lumpectomy alone, lumpectomy plus rads, single mastectomy, double mastectomy, and single or double mastectomy plus rads.

     

    I am looking for a standard of care for DCIS with a BMX follow up treatments. And for the record, not all have radiation after surgery. I see that as confusing for those just starting out...Not all that have DCIS get radation as treatment.
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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited November 2012

    Mods?

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited November 2012

    Any reply Mods on the differences in follow up for someone with lumpectomy and/or rads, UMX or BMX?

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited December 2012

    I guess I will give up on any comments from the moderators.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2012

    Cinnamon-- we are so, so sorry for letting this slip by!! Please accept our apologies -- we'll reach out to the Editorial team immediately to get some clarification for you.

    In the future, if we ever don't see your post, please feel free to shoot us a PM so we'll get an alert!

    --Your Mods

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2012

    Hi Cinnamon,

    We've heard back from our editorial team and our in house medical advisor, Dr. Brian Wojciechowski. Here's what he had to say:

    "The recommended follow-up schedule is the same for all women with DCIS or invasive cancer, regardless of what procedure was done: h and p (Edit: short for History and Physical Examination) every 3-6 mos for the first 3 years, every 6-12 for the next 2 and annually after 5 years. The only imaging studies recommended for routine use are annual mammograms for anyone with residual breasts. Women with mastectomies will not have mammograms but will still need a clinical exam. Routine lab work is actually NOT recommended. It is true that not all women with DCIS get radiation. Certainly not those who have had mastectomies or who have contraindications to radiation. Women who have had DCIS and only lumpectomy are supposed to get radiation. (Breast conserving therapy) It is not possible yet to identify women who are low enough risk to be spared radiation after lumpectomy alone in DCIS."

    Thanks for bringing this to our attention, and we'll be sure to update our site content soon!

    --The Mods

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  • icefishinglady
    icefishinglady Member Posts: 56
    edited December 2012

    With apologies for my ignorance, what is "h and p"?

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2012

    icefishinglady, it's short for "History and Physical Examination." Thank you for asking; we've added the explanation to the text.  Smile

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  • cathy1957
    cathy1957 Member Posts: 3
    edited January 2013

    Thank you so much for addressing and responding to the questions about 'standards of care'.  I too was diagnosed with DCIS; High Grade with multiple areas of comedonecrosis and on biopsy, no clean margins...required mastectomy; chose bilateral with reconstruction, did not have minimum standard for margins again [.45cm] so 7 weeks of whole breast radiation.  I requested clarification on follow up care and have been told that for DCIS there is no standard.

    I recognize that my set of circumstances with DCIS is unusual but still deserving of clear guidelines for the lifelong committment needed to monitor my health.  I will print off the above response from the moderators and take it to my next appointment as a starting point to address the question again.

    Thank you Thank you

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  • Kassylou
    Kassylou Member Posts: 63
    edited February 2013

    Thank you!!

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