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KC71579
KC71579 Member Posts: 73
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi Ladies

I have a question for you.  My surgeon called me Friday night and told me that my lumpectomy on 2/24/10 confirmed that I will need radiation therapy and that chemotherapy is NOT needed.  So, I just went to meet the radiation oncologist. He got a copy of a report dated 2/22/10 which was the update from my original breast duct excision/density excision on 2/9/10 where they originally found my cancer.  This addendum to the report states I am ER+, PR+, and HER2+.  My radiation oncologist freaked about the HER2+, and mentioned now chemo, so it made me and my mother cry.  He tried to call my surgeon, who is currently in surgery.  Now I'm really scared about how this changes my treatment, if at all.  He handed me a paper "Practice Guidelines in Oncology," which still says that no adjuvant therapy is necessary given all other characteristics of my tumor and said that I *might* not need anything else, but that he was going to talk with my surgeon and call me later.  Any insight you can give me would be greatly appreciated.  I'm freak out again :'(  I am waiting for someone to call and talk to me.  I'm only 30 years old and getting married in a few months.  :'(  HELP ME!  Krissy :(

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  • 3monstmama
    3monstmama Member Posts: 1,447
    edited March 2010

    If it were me, I'd see a regular oncologist.  Surgeons know surgery and how to cut things out, radiation oncologists know radiation and oncologists know cancer.  Oncologists are the ones who deal with chemo and know all the ins and outs of ER, PR and HER.

    I know I felt soooo much better after I spoke to my regular oncologist.

    Hang in there!

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  • dsj
    dsj Member Posts: 277
    edited March 2010

    Ditto to the suggestion to see an oncologist. What I was told that oncologists are specialists in cancer and are the best ones to coordinate your care and follow you up for the next several years.  You are young and you need to be sure you are on the right track. 

    Edited to add:  I too felt better after talking to an oncologist. He gave me a really secure feeling that he was on top of things.   

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  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2010

    Krissy ~ Also ask the oncologist you see exactly how the Her+ was determined.  If this info is in  an update from your original biopsy, the testing may not be as accurate as results obtained from your actual surgery (which would not be an update, but a separate report).  So be sure to have the oncologist explain how the Her2+ was determined, and if it's borderline, ask if a FISH test was performed or still needs to be done.

    Unfortunately, I think a Her2+ status will override any other characteristics of your tumor and may require specific attention.    Deanna 

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  • IronJawedBCAngel
    IronJawedBCAngel Member Posts: 470
    edited March 2010

    Herceptin is a relatively new drug that is a targeted therapy for Her2+ women.  I have some friends that credit it with their survival.  Like any drug, it has some risk factors, but is not as hard on you as some of the regular chemo regimens, as in I do not believe you suffer the nausea and hair loss.  I believe the normal course of treatment is about a year. Your oncologist will have more information for you.

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  • redsox
    redsox Member Posts: 523
    edited March 2010

    Krissy,

    I agree on the suggestion to see a medical oncologist and to ask about how the results were determined. 

    Your surgeon may not have had the addendum which normally does take longer.  For DCIS the significance of HER2+ is not clear and many doctors would not think the result was significant.  How does your extremely small invasive component affect that viewpoint??  I don't know the answer.   I checked the NCCN guidelines (the most widely accepted clinical guidelines for cancer -- http://www.nccn.org/  -- you have to register to view) and they seem to still say no additional treatment for your case. I do know that a layperson like me making such a statement based on your profile is not something you should rely on!   A medical oncologist should help sort it out. 

    Take a deep breath now!

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  • KC71579
    KC71579 Member Posts: 73
    edited March 2010

    Hi redsox

    Your statement on my case is right on.  The NCCN guideline is EXACTLY what the radiation oncologist gave me a copy of when he came back into the room and said, "Look, I found some good news" after he made me cry with his "OH CRAP!" response to the HER2+ line in my report.  Based on what he interpreted from that, it will not change my treatment.  But, he's not sure and he did say some medical oncologists probably will disagree and want to be more agressive.  I made an appointment with an oncologist for next week.  He is the brother of one of the girls I work with.  I am also going to reach out to Sloan Kettering in NYC tomorrow and try to get in there.  I'm not messing around with this cancer any more.  And I'm going to find any other oncologist in my area and get as much info as I can.  I am trying to breathe but I just want to cry.  I'm tired of the ups and downs :'( 

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2010

    Krissy,

    How big was the tumour? If it was less than 5mm they may not recommend chemo. It's a grey area concerning HER2 less than 1cm. Mine was 11mm so I had no choice regarding chemo.

    Sue

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  • KC71579
    KC71579 Member Posts: 73
    edited March 2010

    It was 4mm DCIS.  The invasive components measured 1.5mm.

    I am praying!  HARD!  I hate being in the grey area. 

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2010

    Krissy, I'm sorry that the radiation oncology scared you.  In my opinion, he was out of line. 

    I have four comments/suggestions about your situation:

    • First, what's important is the HER2 status of your invasive component, not the DCIS.  HER2+ DCIS isn't important (based on current knowledge) - most DCIS is HER2+ and currently there are no differences in treatment for DCIS whether it's HER2- or HER2+.  But HER+ invasive cancer is considered more aggressive.  This means it's important to confirm that it wasn't just your DCIS that has tested HER2+ but that it was actually your small invasive cancer that was tested and that is HER2+.
    • Second, as recommended by others, you should see a medical oncologist about this.  A radiation oncologist knows about radiation therapy.  This is not his area of expertise and frankly he probably shouldn't even be commenting on it, except to advise you to seek the opinion of a medical oncologist.
    • Third, as you and redsox noted, my understanding of the NCCN treatment guidelines is that for an invasive cancer of 1.5mm that is HER2+, no chemo or Herceptin is recommended.  The current "line in the sand" for chemo and Herceptin for an HER2+ tumor is 5mm or greater; some docs will recommend chemo and Herceptin for HER2+ tumors that are 4mm or possibly even 3mm, but rarely for tumors smaller than that. There have been studies recently that show that small invasive tumors that are HER2+ do benefit from chemo and Herceptin but I don't think these studies referred to tumors as small as yours.
    • Fourth, there is a new forum on this board for women who have microinvasive DCIS that is HER2+.  It's the forum right below the DCIS forum.  It might be helpful for you to join the discussions there with the other women who have the same diagnosis as you.

    Hope this helps!

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