Do not treat your DCIS lightly!

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  • april485
    april485 Member Posts: 3,257
    edited July 2014

    I was grade 2 and had rads and it was recommended for me even though I had a 5mm DCIS. I did a clinical trial of partial breast radiation 2x a day for 5 days at high grays and had minimal discomfort although was exhausted for a few weeks afterward. The fact that I could finish in one week is what prompted me to say yes more so than if I had to do 33 tx protocol.

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  • mefromcc
    mefromcc Member Posts: 188
    edited October 2014

    I might be able to handle just a week of having to show up. I will check with the BS when I see him again September 29.

    Two weeks ago my boyfriend asked me to marry him. I have been widowed for 13 years, and never expected to be planning a wedding at 64! After talking with the priest Monday, we set the date for the week before I see the BS.

    So I now have yet another reason to make sure I make the right decision on treating this DCIS. More worries/stress.

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  • Dogsneverlie
    Dogsneverlie Member Posts: 278
    edited July 2014

    Thank you so much for sharing - really appreciate it.  Love your Red Queen comment!!!!

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  • Mariael
    Mariael Member Posts: 7
    edited August 2014


    Thank you, Bessie. Your response really is helping me.

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  • Theda
    Theda Member Posts: 42
    edited September 2014

    Hindsfeet, sending you virtual hugs! Thanks for taking the time to tell your story. With the debate going on about DCIS not being "real cancer" and over treatment, I sometimes felt guilty about treatment options and decisions.

    I skipped rads and tamoxifen and had a mx. My DCIS was grade 1, micropapillar but multifocal and multcentric, 1.5 cm hidden in a 3 cm lump that was visible and palpable from the outside but still overseen on a mammo and ultrasound exam. I still did not have clear margins after removing 1/4 of the breast so there was not much left to work with, given I started with an A cup. I had an immediate reconstruction.

    A reason for not doing rads was also that you can only do it once in the same spot and at 37, I did want to keep that option in case something shows up at a later point. 

    The pathology results showed more DCIS in other spots, so it feel like it was the right decision for me.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited September 2014

    There is just no clear cut way to go.  Briefly, my DCIS was small, grade one with big margins.  Nothing more after lumpectomy because of second opinion.  I just had my two and a half year follow up diagnostic mammogram with an all clear but still, I worry.

    My friend, eight years ago, with similar situation just diagnosed with IDC in the opposite breast, three of four nodes positive.  Rads eight years ago would not have prevented this.  

    I used to think that women who opted for double mastectomy for similar diognosis was way overkill.  Now I think they are the smart ones.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited September 2014

    Infobabe, please cite your basis for your opinion that "rads eight years ago would not have prevented this" for your friend. Were rads recommended fo her? Were her stats exactly the same as yours?

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2014

    Melissa,

    Her friends IDC occurred in the other breast, not the DCIS breast.

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  • coffeelatte
    coffeelatte Member Posts: 209
    edited September 2014

    This has sure been an important thread with lots of pertinent information shared.  I am a little scared (ok, a lot) the cancer will come back even though I had a double mastectomy.  I see the BS every four months for a manual check from him and I do a lot of exams along the scar line and around the lymph nodes weekly to see if I feel any new lumps of bumps.  I did not think I would still feel this nervous after my PCP last year said "how lucky" I was to have been diagnosed with DCIS.  But my BS is not so lighthearted on the subject.  He takes DCIS very seriously because he said cancer is mean and it can reoccur in a patient you think is totally in the clear and then on the other hand you will have a patient with very advanced cancer, that behaves, and it doesn't come back.  There is still a lot to be learned regarding breast cancer; definitely not a one-size fits all.

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited October 2014

    Thank you Hindsfeet and Beesie for sharing. I'm new to this and still learning. We can't live in fear but thank you for the reminder to be vigilant. I know what fear and anxiety can do to our lives...mental and physical anguish. I thank God that I m spared radiation and chemo for now.  I try to remind myself not to worry about the possibility of getting invasive cancer in the future because I have no control over it. I do what I can now to stay healthy (regular exercise, eating organics when I can, avoiding processed food, adequate sleep,decrease stress, etc..) . I'm so grateful for this community of women. Many are so generous with sharing their journeys, times, and informations.  

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