Her2+1 and some questions, Long term survivors?

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Charz
Charz Member Posts: 48
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I was told today that Her2 testing/ treatment is undergoing a revolution. That in the future more women may be given herceptin if they are Her2 +1 or 2.

I was told being Her 2 0 is better than Her 2 +1 which is better than Her2 +2, even though all are negative. Well, i was quite confused. This has not been brought up to me before and it makes me question about my prognosis and i am +1. 

it is quite frustrating because if this is the case and i might benefit from herceptin, gosh i want it. but obviously there is no way to get it. i haven't been too worried about recurrence lately and thought the initial fretting was pretty much over, but sometimes different little facts get me worried again. i wonder what about my cancer makes it +1 and if this makes me more vulnerable to recurrence even if my oncotype was low?

anyway, i know its not too productive, but are there long term survivors with her2+1 out there who didnt get any herceptin treatment? And if you know more about this that would be great because i dont know to much! lol

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited April 2013

    This is the clinical trial that is testing Herceptin for patients that are characterized as "low HER 2."

    http://www.cancer.gov/clinicaltrials/featured/trials/NSABP-B-47

    Reading carefully the criteria for entrance into the clinical trial, note that patients like myself, would NOT be permitted to enroll because, as of now, the risks of getting the Herceptin outweigh the benefit.  Perhaps your physician did not think you would qualify for the trial and that's why it wasn't mentioned....

    http://www.cancer.gov/clinicaltrials/search/view?cdrid=692574&version=healthprofessional

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited April 2013

    Charz...I also want to mention that I don't know where you are in terms of how far away or how far into active treatment you are...but it is quite normal for little details of the characterisitics of your tumor to get you upset.  That's what finding your "new normal" is all about.  If you had a low OncotypeDX score, you should, at some point, begin to feel confident that this breast cancer journey is a bump in the road towards the path of a long life.  If you had a low OncotypeDX score that means that chemotherapy's risks outweigh the benefits AND it also means that your chances of distant recurrence are small.  Remind yourself that you got to age 50 and by the time you reach 60, and then 70 and then 80 or more, there could be other bumps on your journey through life that aren't now on your radar!  Hopefully, by the time you reach each decade, you will be too busy looking FORWARD that your breast cancer diagnosis will no longer be on your radar...

    If you continue to become agitated by your diagnosis, and it interfers with your enjoying life, I would highly recommend, if you haven't already, join a support group or receive counseling.  I think the hardest part of this journey is choosing a treatment protocol and then ultimately living with that decision and then moving on....

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2013

    charz - the answer to your question about long term survivors who are Her2+1 is that there are many, and none of them received Herceptin.  The only patients currently receiving Herceptin, unless enrolled in a trial, are those who overexpress Her2 at 3+.  Herceptin is a drug that carries its own set of side effects and risks, so until it is proven in trials to provide enough benefit to outweigh the risk for those who express Her2 at lower levels, it won't be given routinely.  I did participate in a vaccine trial for Her2+ that was limited to 3+ patients initially, but that trial (linked below) is now enrolling Her2 patients who are 1+ and 2+.  It is a time, and possibly travel, commitment - and you could end up in the placebo group, but it is somthing to consider if you are looking for possible additional treatment.

    http://clinicaltrials.gov/show/NCT00524277

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  • Waitingforthenextstep
    Waitingforthenextstep Member Posts: 251
    edited April 2013

    SpecialK- Maybe you might know about this.  I have had 3 muga scans since starting chemo in Sept.2012.   Routine, every three months.  Now I am done with chemo and rads, I didnt want another invasive procedure.  My MO said I can do an echocardiogram.  I've seen on the boards some people just get echo's.  What do you think?

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2013

    waiting - I only got echocardiograms - one pre-chemo/Herceptin, quarterly during Herceptin, then one post-Herceptin.  It is definitely not invasive - much like an ultrasound.  There is some margin for error because the technician is placing cursors to measure, but I am not sure what the plus or minus margin of error is.  My onc had no problem with echos only, and they provided enough information to him to continue making educated decisions regarding treatment.

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