Question for you neo-adjuvent girls

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susiered
susiered Member Posts: 256
edited June 2014 in HER2+ (Positive) Breast Cancer

Hi ladies I did 6 THC, then double mastectomy. My original scans showed a 4.7 cm tumor and 2 suspicious nodes. They did do a biopsy on the nodes that was positive. I had IDC with some of the other that has not spread...I'm sorry I can't remember what you call it. Anyway, at time of mastectomy my tumor was 2 cm and still had 2 pos. nodes. I did respond to the chemo..just not the way they or I had hoped. Now I am doing radiation. My question is I felt I needed more chemo, but onc. said no. What were some of your experiences? I keep wodering if I am doing the right thing. I love my onc. and do believe he has done everything he knows how, but I am wondering if I should get a second opinion. And is it too late for that? I know a lot of women have a complete response with neo adjuvent chemo, and it scares me that I did not. Any thoughts or advice? I am really worried about this.

Thank you,

Susan

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  • Seven11
    Seven11 Member Posts: 162
    edited October 2010

    I was in a similar situation - one positive node removed in August, then 6 tch txs then a double mx.  I still had 1.4 cm of invasive in the tissue they removed.  I worried about chemo too, but my doc said no.  I am comfortable with that, but if you aren't, by all means get a second opinion.  

    From what I understand, as long as they got clean margins and there are no more nodes, they got it all.

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  • pmm10414
    pmm10414 Member Posts: 18
    edited February 2009

    I worry about the same thing, but I am have 4 AC followed by 12 Taxol Herceptin prior to surgury then Herceptin every three weeks for a total of a year.  Surgury and radiation after Taxol.  Studies say that is current way to treat tumor. I don't right answer.

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  • TammyLou
    TammyLou Member Posts: 740
    edited February 2009

    In my mind, it is most probable that your oncologist would like to try hormonals.

    Since the cancer was ER+, it is possible that the cancer will respond BETTER to hormonal treatments than it did to the chemo.

    Tammy Lou

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  • susiered
    susiered Member Posts: 256
    edited February 2009

    Thank you ladies for replying. I have made the decision in the last few days to get a second opinion. I know it seems late since I have already done chemo, surgery and currently rads. I live in the Atlanta area and called Emory on wed. and they assured me it was not too late to consult with them. They are a big research hopital and I just thought maybe they have knowledge that my onc. doesn't have. It can't hurt and this is my life here and I want to at the end of all this know I did EVERYTHING I could. Good luck to both you girls!

    Susan

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  • Annaanne
    Annaanne Member Posts: 190
    edited February 2009
    Hi Susan:
    Second and even third opinions are the way to go.  
    To add to your info:  I was dx 5/05 (stage 3, her+, er/pr-) and had A/C, then Taxotere/H before surgery.  After all that chemo, I still had 6 cm of tumor and one grossly positive (1cm) node.  Very scary.  Post surgery, like you, I consulted other oncs and was told that (at that time, fall 05) there was no research to support additional chemo.  I continued with rads and the remaining 9 months of herceptin.  I don't know if new research still supports that, but your consults will tell you.
    By the way -- Fast forward to 09 and I'm totally well.
    I wish you the best.  For me, the time just after surgery was the hardest.  It's all be up since then. 
    Annaanne 
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  • susiered
    susiered Member Posts: 256
    edited February 2009

    Annaaanne thank you so much for the info, and congratulations on being ned 4 yrs later. That is the kind of news I like to hear!! Makes me feel a lot better to hear that! Thank you!!

    Susan

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  • Annaanne
    Annaanne Member Posts: 190
    edited February 2009

    Susan:

    Good luck with your consults.  It really will get better soon.  

    I think herceptin is an amazing drug.  My docs say the same.   

    It took me almost a year (post surgery) to regain my full strength, fitness, confidence that I was indeed healthy again (and I'm in my mid fifties),but gradually it all came back.

    Take care.

    Annaanne 

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  • susiered
    susiered Member Posts: 256
    edited February 2009

    Thank you Annaanne, I read your message at a time when I am really feeling scared and needed the reassurance that women in my situation DO stay well and go on to live healthy lives. I am starting to feel stronger now and as weird as this may sound ..the stronger I get the more fearful I become. I am getting a taste of feeling good and enjoying my family and friends again and I get so scared it all will be taken away again. Sounds like I am not the only one that has had these fears.You are right ...herceptin is an amazing drug and we her2+ women are so lucky to have it!! I am hoping as the days go by I will feel more confident. Thanks for the encouragement!

    Susan

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  • Seven11
    Seven11 Member Posts: 162
    edited October 2010

    Wow Annaanne - thanks for sharing.  Susan, keep us posted.

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  • snowbunny75
    snowbunny75 Member Posts: 1
    edited February 2009

    Hi Susan,

    I am getting the same therapy you are getting. Chemo, surgery (Dec 08) now radiation 5weeks along with Herceptin for 1 year. I am also being approached to join a study to be given bisphosphonates for 3 years to help prevent bone cancer. I am still deciding. My worry is how common is the cancer to metastasize with 1 node positive and cancer particles found in the tissue after my lumpectomy?

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  • Annaanne
    Annaanne Member Posts: 190
    edited February 2009

    Susan:

    You're going through a really traumatic experience and you have to just go through it until you can rebound emotionally.  There's no substitute for time.   You're still in the midst, but we (on this site) can reassure you -- life returns to normal.  The body has amazing power to heal.  And the fear (which was the worst part of bc for me) does fade.  

    I totally understand what you wrote.  You're still too close to trust that you can really recover -- that will change.  

    Annaanne 

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  • mmm5
    mmm5 Member Posts: 1,470
    edited February 2009

    Snowbunny-

    I am in the clinical trial for Bisphos. and I speak to them regularly and all including Her2 gals are doing very well in trial. If you have more questions for me let me know.

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  • LanaHN
    LanaHN Member Posts: 7
    edited February 2009

    Hi mmm5,

    Would you help to ask if I can have Herceptin together with hormone (Arimidex)? And if Herceptin after surgery and Chemo work well for me.

    Here's some informations of my diagnosis:

    I'm triple positive, ER++, PR++,HER+++, 6 negative nodes.

    I had surgery in last Oct to remove right breast with 1.2cm and 4 rounds of Chemo.

    Now, I'm on hormone therapy. My Doc recommends herceptin for me, (1 year / 3-week).

    I read about how herceptin work on tumors before surgery.

    But i did not find any infomation about how herceptin work on people that had tumors removed.

    I have to answer my Doc whether to go on with Herceptin or not.

    Your advices and experience would be great help for me.

    Lana,

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited February 2009

    I had herceptin after treatment,  I would absolutley say get it.  It has show to have great results in preventing reoccurance, cuts you risk by 52 percent i believe.  I get it every three weeks, and its not that bad. 

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  • susiered
    susiered Member Posts: 256
    edited February 2009

    Lana I agree with fightinhrd123, Herceptin is suppossed to be excellent for preventing reoccurance in her2+ women. I also get it every 3 weeks. I would definatly do it. It is one more thing in your arsenal to fight your cancer and keep it from returning.I have been doing it a while and there are very little side effects. After my transfusion I am a little achy for about 24 hrs and my nose runs ALL the time. Other than that it has been fine for me. Hope this helps. 

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  • emiliasdance
    emiliasdance Member Posts: 7
    edited February 2009

    Hi Susiered.  I had a near total response to neoadjunct chemo, but there was still cancer evident at the time of my mastectomy.  I asked my Onc about the relavance of it and he skirted the question by stating that the chemo had done an amazing job cleaning out the large masses and that only trace cancer was found.  Not really what I was asking him.  I did find the answer last year when I read the book "Icebound" by ....Neilson.  In it her oncologist gave her a rather candid answer to the question.  Her  oncologist states in an e-mail that women who have a partial response to neoadjunct chemo have a 50% overall risk of distant recurrance.  At the time I read this I had just passed my 4th year of survivorship, and the thought kind of rained on my party.  I wondered why my doctor hadn't been so forth coming about the likelihood of reccurance. 

    To answer your question; It is never too late to get a second oppinion.  If nothing else, it could give you a fresh view of what you need to do.

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  • mmm5
    mmm5 Member Posts: 1,470
    edited February 2009

    I had both Arimidex and Herceptin after surgery!

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