DCIS with microinvasion , estrogen +, HER2 neg

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heidismom
heidismom Member Posts: 38
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I was diagnosed with med grade DCIS after biopsy.  Lumpectomy last week, surgeon called today to say tiny amount of invasive was found.  Less than 1 mm, "miniscule chance of spreading to lymph nodes, impressed they even saw it, considered inconsequential, will continue with thoughts of radiation".  Estrogen positive, HER2 neg. "hugely wide margins achieved".                                              He mentioned to my husband after surgery that I could be a good candidate for balloon radiation.  He mentioned that type previously at consultation and didn't recommend Tamoxifen due to terrible side effects.  I also have anti-phospholipid antibody which is a blood-clotting antibody, which I think negates the possibility of hormone therapy anyway.  And I'm 52 and told that I have reached menopause.                                                                                                                                                                                       Is he being casual about the micro-invasion, should I get another opinion?   Isn't balloon radiation still in clinical trials?  Too risky?  I am definitely available for daily radiation, but the "fast-track" type certainly is tempting.   My post-op appointment is tomorrow.  So many questions.    I keep getting thrown for a loop at every turn.    Feedback please?  Thank you!!!! 

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2012

    heidismom,

    I had a microinvasion too.  In most cases, the presence of a microinvasion doesn't have any affect on the treatment plan and barely has any effect on the long-term prognosis.  It does change your diagnosis however from DCIS Stage 0 to DCIS-Mi Stage I.  

    Did you have a sentinel node biopsy?  If not, then with the microinvasion, it is something you may want to consider.  Even with an invasive cancer that is so tiny, there is still a risk that there could be nodal involvement.  My microinvasion was 1mm and my surgeon told me that there was about a 10% chance that a very small amount of cancer might be found in the nodes.  I've seen studies since then that also put the risk at about 10%.  Fortunately my nodes were clear.

    Women who have small invasive cancer and clear nodes - and even some who have a small amount of nodal involvement - generally have the exact same treatment plan as someone who's had DCIS.  So with a single 1mm or <1mm microinvasion, there is no reason why your treatment plan should change. 

    As for your long-term prognosis, with the presence of any amount of invasive cancer, it means that there is a chance of mets.  But with such a tiny tiny amount of invasive cancer, the risk is very low, 1% or less.  The long-term studies I've seen put the survival rate for women with DCIS-Mi within a fraction of a percent of the survival rate of women with pure DCIS.  Both are in the range of 98% - 99%. 

    So do you need another opinion about the microinvasion?  No.  However, you should see a medical oncologist to review your overall prognosis and treatment plan.  A surgeon's job is surgery; it's the role of the medical oncologist to recommend any additional treatments that might be beneficial.  And since you had a lumpectomy and rads are the next step, you should talk to a radiation oncologist as well.

    As for your question about balloon radiation, I don't have any experience or knowledge on that one so hopefully someone else will come along soon. 

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited October 2012

    So sorry to hear about your diagnosis.  Regarding balloon radiation also known as Mammosite, as well as brachytherapy, you are correct that it is still considered experimental.  At last winter's prestigious San Antonio breast cancer summit, it was disclosed that women who had brachytherapy had more complications than women who had whole breast radiation following lumpectomy that led to subsequently more mastectomies.  I was given the choice of brachytherapy when I was diagnosed in 2010, but declined after doing research. Instead I chose whole breast radiation and I did well.  I wish you well with your decision.

    "Brachytherapy Was Associated With Twofold Increased Risk for Mastectomy, Complications"

    http://www.aacr.org/home/public--media/aacr-in-the-news.aspx?d=2603

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  • heidismom
    heidismom Member Posts: 38
    edited October 2012

    Thank you so much, both of you!   I too read some things about brachytherapy that gave me pause.  No need to be a guinea pig.

    Today I met with the surgeon, and his office is setting up appointments next week with both a radiation oncologist and medical oncologist.   Obviously I need to be prepared to hear they don't agree that sentinal node biopsy not necessary.  Because as you said, Beesie, he's the surgeon only.  

    As for the brachytherapy, he said they've been doing it with great success here in Charlotte for 20 years.  However, he wanted to consult with the oncologists whether I'd still be a good candidate now that the microinvasion is in the equation.  I told him I'd really rather do the standard whole breast radiation, and he was agreeable with that.    More waiting, worrying and wondering.  

    I returned to my kick-butt exercise class today, low-impact of course.  Any bouncing does not feel good.  Dr. said do whatever feels okay, as the seratonin/endorphins or whatever produced by exercise, sunshine and camaraderie are all good.  He's right, I love the girls in my class and they're among the few I've confided in so far.  Just waiting until I have the actual "plan" before I talk too much.  

    Thank you again for your input.  I've been lurking on the site, reading only, for a month.  It's good to actually be able to "talk" about it with people who truly understand. 

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