Her2 Positive Treatment

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windgirl
windgirl Member Posts: 340
edited September 2014 in HER2+ (Positive) Breast Cancer

Hi,

I'm 37 and just got diagnosed with IDC, which based on the needle biopsy pathology report is ER and PR positive at 100% as well as Her 2 positive. While I do not have an official staging yet, it looks like the tumor is about 3x2x2cm, no other lesions in either breast, no nodes or mets based on scans. My recommended treatment is as follows: Neo adjuvant therapy with Taxotere Carboplatin Herceptin and Perjeta for 6 rounds (Herceptin to continue for a year) followed by surgery. Dr. said that by the end of this chemo my tumor would have shrunk so I could do a lumpectomy plus radiation. They are doing a BRCA test on me to see if I would come out positive and desire to have a mastectomy instead on both breasts to minimize risk of future occurrence. On top of all this, Dr also said that I would be on tamoxifen for the following 5 years.

I was wondering if anyone out there with ER+, PR+, and Her2+ getting a different treatment? Also, have any of you been able to avoid chemo?

Finally, I wonder if a second opinion on the pathology report makes sense or if they are typically pretty accurate once its designated as Her2 positive. 

Thanks!!!

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited July 2014

    Hi and welcome. I'm so sorry you're here, but very glad you found us. I was 34 when diagnosed in 2011 with Triple Negative breast cancer; conversely, you're Triple Positive. I'm sure other Triple Positive ladies will be along, and there is also a thread here that seems pretty active. Your treatment plan of carboplatin, Taxotere, Herceptin, and Perjeta is the standard treatment for HER2+ women, and many respond very well to it. Herceptin has done so much for HER2+ Breast cancer. To answer your question, you will find many women with your treatment regimen, but almost no one who has your stats and didn't have chemo. If imaging is correct and your tumor is 3x2x2cm, then you would be well into the area for chemo. For HER2+, chemo is considered and usually given for tumors that are 0.5cm. 

    Having BRCA testing is a good idea, but just to let you know, while certainly possible you could be positive for a mutation, your phenotype of HER2+ makes it much less likely. There are Triple Positive women with BRCA mutations, but it's rare, even in the BRCA community. 

    Welcome and I'm sorry again that you're here.

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited July 2014

    Oh, I wanted to see if you'd found an MO in South Florida that you like based on your other thread. I just moved from Florida out of state. I'm originally from North Central Florida, but lived for the last couple years in West Palm. I didn't like my team once I moved there, as I was originally treated at Moffitt in Tampa and loved it. I've heard good things about the University of Miami Sylvester Cancer Center. 

    Best of luck.

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  • windgirl
    windgirl Member Posts: 340
    edited July 2014

    Thanks so much for the quick response! Really appreciate it. I went to see Dr. DerHagopian, he's a breast surgeon and his name was recommended in one of the forums here. He recommended me to see one of 3 oncologists, one in Mount sinai, one in Sylvester and the other in Baptist where he works. I was able to get an appointment with the doctor in Baptist for this Monday so I will be doing that. I am considering going to one of the more well known cancer centers, such as the one in Tampa, for a second opinion. It does seem however that once you hit Her2, the treatment regimen is pretty standard, unless maybe there are ladies here who did something different. Thanks again :)

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited July 2014

    You're very welcome. I loved Moffitt and they're the only NCI designated Comprehensive Cancer Center in the state of Florida. I adored my breast surgical oncologist (SO), Dr. John Kiluk. He was the most compassionate and warm physician I've ever experienced anywhere. 

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited July 2014

    Here's a link to the Triple Positive thread here on BCO. The thread is very active. It always helps to find women with the same disease phenotype and characteristics. 

    https://community.breastcancer.org/forum/80/topic/...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2014

    I am triple positive, dx'd almost 10 years ago. Stage III, grade 3, 2.7cm tumor, 5 lymph nodes involved. But I have been NED every since my lumpectomy! No recurrences, no metastases.

    I had lumpectomy first, followed by dose-dense ACT (Adriamycin, Cytoxan & Taxol), followed by one year of weekly Herceptinn then radiation. I have been on Arimidex for 9 years - going for at least 10.

    Protocols & chemo choices have changed somewhat since 2004 & you are getting "state of the art" treatment. And there are variations for each individual - no patient & no cancer is exactly like another. There is no ONE CORRECT way to treat your cancer regardless of stage & type. Surgery prior to chemo is now often the choice made. A lot of women have mastectomies, with the thought that getting rid of the breasts will get rid of the cancer - but once you have cancer, it can seed cancer cells anywhere! Hence the chemo & other treatments. My surgeon told me that risk of recurrence or mets was the same for mastectomy as for lumpectomy (with radiation). 

    I had no side effects from Herceptin, only minimal problems with radiation (no fatigue, just a little skin burn), and absolutely no problem with Arimidex. Chemo was rough for me - probably the worst aspect of the whole cancer ordeal. But I  would do chemo all over again even knowing what it was like. Every bit of my treatment has given me the best chance I have to live a long & full life!

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  • Jmo06
    Jmo06 Member Posts: 159
    edited August 2014

    What drs would you recommend?

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  • mbcs829
    mbcs829 Member Posts: 5
    edited September 2014

    I found this forum because I will start chemo in 2 wks. and wants to know and learn from fellow sisters who've been there and still those in journey. I  just had the surgery done 2 wks ago. Devastated by the pathology report, HER2 and ER + Grade 3 with +3/4 lymph nodes.I have no palpable tumor before a routine mammo but a streotactic biopsy revealed an invasive tumor.  Met my MO once and he was very persistent that I join a Phase III trial being done in Northern California by my HMO. So i emailed him asking what his chemo recommendations be put in writing if I decide not to join the study but the next day he called me back to push me to join the study and even mention the $ amount of the medication i will be getting if I join the study.. Thanks to this board I think I have a better understanding of what to expect in the coming weeks. Monday i will have bone scan and CT done and on Tuesday i will have my portacath put in. I will be waiting for the study coordinator's call  and hopefully meet a more sympathetic MO that will explain a good plan of care specific to my case. Meanwhile, I will troll this forum for more expert advice from fellow "fighters"!!

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2014

    Welcome mbcs829 to Breastcancer.org. We're sorry you have to be here, but glad you found us!

    Besides sharing your experiences and learning from other members here at the boards, you may also want to take a look at the Breast Cancer 101section from the main site, which is designed to help you sort through all of the information on our site to find what is more relevant to you right now.

    Also reliable information on  IDC — Invasive Ductal Carcinoma where you'll learn about symptoms,
    diagnosis, treatment, etc.

    Possibly of interest too is the Oncotype
    DX Test

    Regarding the Phase III trial, do not get pressured into something you are not happy with and thoroughly read up on details of the Chemo as it is YOUR body and only your decision that counts. Weigh up any risks carefully.

    Best wishes for Monday scans and Tuesday portacath.

    We hope
    this helps!

    The
    Mods

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited September 2014

    yes, ask the MO why he is insistent that you join the trial? Don't be pushed into anything you are not comfortable with.

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