Post BMX - DCIS to IDC - 1.5 mm Margin - No Radiation?

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BlairK
BlairK Member Posts: 399
edited June 2014 in Radiation Therapy - Before, During, and After

have been posting on the DCIS section and now am moving here because my wife's diagnosis and possible treatment options have changed.  Initially, my wife was diagnosed with DCIS in both breasts.  On October 14th, she had a double mastectomy with immediate reconstruction with gummy implants.  She also had bilateral sentinel node biopsies which were negative.  We received the final pathology report on October 27th.  The final pathology report said that the left breast was all DCIS with surgical margins of 16 mm and Stage 0.  The right breast pathology changed.  It is now Stage 1a.  It is now both DCIS and invasive ductal carcinoma IDC.  Grade 3, comedo type with necrosis, solid and cribform, ER positive, PR negative, 3 foci of IDC - 1 mm, 1 mm and 3.5 mm.  Unfortunately HER2 positive.  Surgical margin of IDC is 1.5 mm and DCIS is 2.0 mm.  The Breast Surgeon referred us to a medical oncologist and we will have a consultation on Monday.  The Breast Surgeon also said radiation was not necessary.  The Breast Surgeon mentioned that in her opinion, my wife will need to have herceptin, chemotherapy and arimidex.  I would appreciate hearing from you if you are in a situtation similar to this and face a dilemma with radiation where the surgical margin of IDC is 1.5 mm (and 2.0 DCIS).  Thank you very much in advance for your information-sharing and advice.

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited October 2011

    Hey Blair & wife!  I am not in the same situation as your wife...But I just thought I would comment on how this forum helped me....I'm a lot older than you guys, and when I first found out I had cancer, in November 2 years ago, I was just terrified! 

    I was really careful how I explained it all to my Husband and our 2 grown Daughters....Because each of them have their own fears, and I just didn't want to scare them...So I really played it down.   And actually my Husband knows about as much about a computer as he does repairing the space station..Wink  So he wouldn't be as inter-active as you are. And honestly I wouldn't want him knowing how fearful I was....so the women on here have helped me more than I could ever wish for.....because they have all been through it.

    Maybe your wife could somehow "find" us, and we could give her even more support.. she would feel even more "in control"? 

     We could all help her.  You have to be commended for trying to help your wife.... But maybe she could just try....   We could all guide her, and comment on her fears/treatments.  Best of luck to you guys....

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear chevyboy - My wife will never visit this bulletin board.  The bulletin board has helped me gather information and be well-prepared for the doctors.  I am 56 and my wife is 52.  As we approach the possibility of chemotherapy and herceptin, these medicines have very scary side effects.  It is not simply take this and that and everything will be great.  You have to be well prepared and to ask questions and understand the benefits and risks.  So it is I who am on the bulletin board.  My wife does go to a breast cancer support group but it only has 10-12 people and meets once a month.  Anyway thank you for your post.

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited October 2011

    Morning Blair...I don't know if the other gals know you are posting on this thread....Try going back to the one you were first posting on, or look into the others that talk about treatments, like Herceptin, Chemo & Arimidex...

    I'm glad she is going to a support group anyway!  I just find it easier to talk to people I "don't know"...

    I know EVERYone is different....I tried talking to my one older friend, & she said she would never have any surgery, no matter what...So basically she thought I was nuts to even try and take care of my breast cancer...!    She TOLD me that you don't even suffer in Hospice's...that they keep you pain free....  So needless to say, I don't even talk to her about our health....

    Take good care!

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited October 2011

    BlairK, Sorry to hear you and your wife are going through this. FWIW, I heard that 2 mm is the margin that they shoot for. The good news is that the IDC tumors are very very small, so that might be why the BS feels comfortable with the the 1.5 mm margin. Did the BS talk about a possible second surgery to get a larger margin? (or maybe with the BMX there's no extra tissue to remove?) I'm not an expert on this (I had a lumpectomy and mine was close to the skin) but my understanding is that there are some situations where MX is followed by rads, and it would seem like small margins for a grade 3 IDC tumor could be one of them.  I know you're meeting with the MO tomorrow, but it never hurts to get a second opinion (from another BS). My understanding is that most insurance companies pay for second opinions.

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited October 2011

    Blair - as you know, I've been doing lots of research on this for radiation post-MX for DCIS with small margins.  Recommendations on that are still controversial - not enough data to have a firm guideline.  I don't know what the guidelines are for IDC/margins/postMX, but I found this link which was helpful to me, and I thought perhaps you may find some good info in here.  It's really technical though - you'll have to wade through it. 

     http://www.acr.org/SecondaryMainMenuCategories/quality_safety/app_criteria/pdf/ExpertPanelonRadiationOncologyBreastWorkGroup/PostmastectomyRadiotherapyUpdateinProgressDoc5.aspx

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear dancetrancer - I will read this article when I have a chance.  We have our appointment with the medical oncologist today.  I also spoke to the office of the radiation oncologist.  The medical oncologist and radiation oncologist are part of the same hospital and often work together.  Chemotherapy and other medicines will come first.  Radiation, if necessary, would come later.  The Breast Surgeon feels that Radiation is not necessary but I am concerned about the invasive ductal carcinoma surgical margin of 1.5 mm and the DCIS margin of 2 mm in the right breast.  Thanks for the article.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2011

    BlairK - Is your wife going to have reconstruction, or did she at the time of MX?  This is a factor with radiation.  Radiation also carries its own risks, both immediate and long-term, so it is important to add that in to your decision.  You can see my stats in my signature line - I had a much larger mass than your wife, and positive nodes - a positive SNB and 1 additional positive node, and both my surgical breast oncologist and medical oncologist indicated no radiation was necessary for me.  In addition to a BMX with immediate reconstruction, I had a complete axillary node dissection 5 weeks later.  I was treated with Taxotere, Carboplatin and Herceptin.  I am still receiving Herceptin (until Feb. '12) and am now taking the aromatase inhibitor Femara.  I am 55 years old.  Best of luck to you both! 

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  • BlairK
    BlairK Member Posts: 399
    edited November 2011

    Dear SpecialK - My wife had immediate reconstruction with gummy implants.  We met the medical oncologist today.  He is recommending Taxotere + Cytoxan (Cyclophosphamide) + Herceptin every three weeks for four times followed by Herceptin for a year (in total) and Arimidex for five years starting after the TC is finished.  The consensus now is no radiation so we will focus on the chemo, targeted therapy and hormone therapy. 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2011

    BlairK - I certainly hope that your wife is able to tolerate her treatment well.  I recommend joining a thread of folks who will be receiving chemo at the same time as your wife, and/or a thread of the specific regimen of chemo as the shared knowledge and comraderie is invaluable.  There is also a thread of things to know before chemo that is worth checking.  I would advise icing nails during the Taxotere portion of her infusion to try to stave off nail issues.  Feel free to PM me for details if you would like.

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  • BlairK
    BlairK Member Posts: 399
    edited November 2011

    Dear SpecialK - Greetings from China.  I am here on a business trip for two plus weeks.  Then go home to take my wife and kids on a vacation before she starts treatments.  I created a thread on the chemotherapy section.  I hope you are doing well.  Thanks a lot for your post and support.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2011

    BlairK - I was in China 25 years ago - I am sure a LOT has changed since then!  Travel safely and enjoy your vacation prior to her start of chemo.  I know this time period of waiting is stressful so distraction is a good thing.  I am glad that you have started some threads - you will get great feedback from the other posters and lots of folks who have already been down the road will offer advice.  I saw somewhere else where you had a question about why some MO's choose Carboplatin and some Cytoxan.  The Carboplatin combination is usually only offered with Herceptin while the Cytoxan option is also sometimes combined with other drugs, in a different order, and can be given without Herceptin.  Drug choices are made by availability, responsiveness to a particular type of cancer (by study results) and I think certain docs just like certain combinations.  Also, the choice may be that most MO give the Taxotere/Carboplatin for 6 tx and the Taxotere/Cytoxan can be for 4 tx.  Most likely, your wife will begin to take Arimidex after a break when she completes chemo.  She is fortunate to not have reconstruction to worry about.

    I am hanging in - I am still receiving Herceptin and in the middle of reconstruction now.  The last 14 months have been a challenge, but this site has been a blessing.

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