Her2+ and surgery only as treatment
Comments
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I would like to know if any of you her2+ ladies opted just to do surgery and did not do chemo or radiation, and what your results have been like. Any feedback is appreciated.
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Not I. I threw the book at it.
I have know ladies who did not do the rads though. If they had no nodes.
Are you asking for someone? Did you choose not to do the whole thing yourself?
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You are stage 3, node positive, why would you refuse appropriate treatment? Your best chance for a cure is the first round of treatment. If you wait to see if it recurs, your chances of survival will diminish markedly. If you don't like or trust your team of doctors, find some other ones! You don't say how old you are, but unless you have some other condition that you expect to greatly reduce your life span, re-consider. Also, I see you joined in Dec. 2008, how much time have you wasted?
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I just saw that you were diagnosed 14 months ago, you are obviously questioning your choice!
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In a recent retrospective study by MD Anderson reported Dec 2008 at San Antonio, women who had HER2+ cancer with negative nodes and tumors less than 1 cm had a 5 year recurrence of 23% and distant recurrence (mets) about 15%. That's for women who were stage Ia or Ib.
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My onc told me the chance of reoccurance for my her 2 status is between 40-60% without chemo. I had a .3cm invasion with dcis with no nodes. I am going for 6 rounds of TCH next week. But the truth is it's all in God's hands and all the statistics can't change what he wants and it is your right to make the decision that is right for you. Who's to say that it won't return even with chemo? You may prolong your life but if it jeopardizes the quality of how you want to live your life so much that you would rather risk living without the horrible effects of chemo than that is your choice and I respect that.
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I think Fern maybe asking just to know or for someone else
I also chose to throw everything I can at it.
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Hi Waterlady
I like your statement of philosophy very much.
The one thing we do know for sure is that any breast cancer can recur whether or not one does treatment. The problem with throwing the book at it is that we also know that throwing the wrong book at it wastes time and adds a lot of misery. We also know that docs still don't know for sure which chemotherapies will work for any given patient.
I know stage I HER2 positives who have not done chemo but they were also hormone receptor positives so were able to benefit from hormonal management instead, and they did the radiation to avoid local recurrence.
Best to you,
AlaskaAngel
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This is an old thread, but I'd like to reactivate it. I just had a lumpectomy with a level one axillary node dissection, and I am choosing to not have chemo or radiation. There will be a tumor board meeting next week to give me an answer about treating with only tamoxifen and Herceptin, which I may agree to do, but only if the menopause symptoms are not too bad (I've been there and done that without HRT, and it was a disaster it was so awful). My MO does not treat with Herceptin except with the other chemotherapeutic regimen, and had ordered TCHP, but my SO disagrees and wants me to do hormone reduction plus Herceptin. I am over 70, and have no one to help take care of me, so chemo is out of the question, and I live too far from my cancer center for rads. If I get an extra 5 years, that will make me happy. I don't want anymore than that, so I'm willing to take the chance. Has anyone else here followed this course of action?
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I've heard, and I'm pretty sure it's true, that you just cannot have Herceptin without chemo. They MUST be given together (I think the chemo "activates" the Herceptin or something like that. I see we are almost identical in our diagnosis. I just saw my MO for the first time today and he said if I had no treatment other than the lumpectomy, my ten year survival would only be 50%. Wow, that was a shocker, not that I was considering walking away. I always figure the docs know WAY more than I do so I go with their advice. I'm 58 yrs old, but I can't imagine even at 70 going with a 50% cancer of survival. Of course everyone has to make the decision that is right for them.
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Unwilling: There are clinical trials now that are assessing which HER2 patients may be able to be treated with monoclonal antibodies (like Herceptin and Perjeta) only (+ hormone drugs for ER/PR+ patients). This is an exciting prospect ... but not for the faint of heart. I hope you have talked with your docs to explore options and that your preferences were met with the respect that they deserve. If you are pursuing chemo, I hope it may be reassuring to you to hear that I did chemo on my own. I did TCH. I have no spouse and no family in the area. I drove myself to and from appointments/infusions. I worked full time and only missed two days of work (those were days when my white blood cell count got too low form me to go safely. I only felt really crummy one of those days.) I had no nausea. I followed my doctors' instructions to the letter regarding what meds to take and when. I kept well hydrated. And I was lucky that my employer was flexible about my taking time to go to appointments. But it was NOT disabling. I wouldn't do it for fun but it was not that bad. I did experience a lot of fatigue and had to cut myself some slack on being a couch potato. And everything tasted bad. That stunk. I realize that everyone's experience is different and Adriamycin tends to be more unpleasant. Posts from other successful "singletons" on chemo gave me courage so I hope that this post may help others. Take one day at a time and be strong. Know that you can do it!
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A friend of mine; who had a very, very small tumor, was highly estrogen positive, and in her late 60's, did Herceptin only followed by five years of an anti-hormonal (she had a lumpectomy so also did radiation). If any of her statistics had been different, her doctor said he would have totally pushed for chemo as well. She is now 10 years out, so that plan worked out well for her.
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