When do most recurrences for HER2 happen

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  • LindaPhoenix
    LindaPhoenix Member Posts: 3
    edited December 2011

    I understood that yes Herceptin does reduce the risk of recurrence by 50%.  However, if you've had an Oncotype DX test done it shows with Chemo and Tomoxifin, arimidex , etc. it drops to 12% (I was at 30%).   So, is it worth the risk of congestive heart failure (or other heart issues) along with potential lung issues to actually go further with the Herceptin?  I have one Chemo to go!  Still undecided about the Herceptin.   My instincts tell me NO.

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  • Omaz
    Omaz Member Posts: 5,497
    edited December 2011
    LindaPhoenix - Welcome!  There can be heart problems with herceptin.  I had an ECHO to measure my heart function before I started chemo and then every 3 months during the year of herceptin.  They especially look at the ejection fraction.  My onc continued the herceptin as long as I stayed at 55% or above (I started at 73%).  If you go too low they usually stop the herceptin and reevaluate.  There are trials going on now (Persephone, PHARE, and a couple more) that are looking at the efficacy of 6 months of herceptin vs. 12 months.  I worried about the lung effects too.  I read that it seems to occur during the actual infusion if it occurs but I don't know much about it.  It is interesting that you got the Oncotype DX test and are HER2 positive, most of us who had HER2+ tumors didn't get the OncotypeDX because they automatically wanted us to do chemo/herceptin.  What was your diagnosis if I may ask?  
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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2011

    Linda - the oncotype test for HER2+ve bc only confirms the diagnosis, it is not used to decide if chemo is necessary. If you are having chemo, herceptin will be a breeze to deal with in comparison. Rather strange you haven't started herceptin yet as it is proven to work better if given with the chemo.

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2011

    Also, heart problems if any, are reversible, not permanent.

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  • PlantLover
    PlantLover Member Posts: 622
    edited December 2011

    *tears again damn it*  All I can think about every time I see this thread pop up is CoolBreeze. It was in this thread that she first told us she had mets. 

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  • Omaz
    Omaz Member Posts: 5,497
    edited December 2011
    PlantLover - and she isn't posting here anymore.  Something happened in another thread but I didn't understand it.
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  • PlantLover
    PlantLover Member Posts: 622
    edited December 2011

    I know Omaz .. I know.  Thanks though.  K ... out of here for awhile.

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  • lago
    lago Member Posts: 17,186
    edited December 2011

    Oh no don't tell me CoolBreeze was mistreated here. I've had it happen to me during treatment. I totally understand why she went underground if that's what happened. She has more important things to deal with.

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  • PlantLover
    PlantLover Member Posts: 622
    edited December 2011

    Lago -  I'm not going to go into what was going on prior to CoolBreeze's last post here but I don't think it has anything to do with why she's not posting right now.

    I hope that you and others do know that she is very sick right now. 

    You can read this thread for more details, especially starting with page 2 of the thread ...

    http://community.breastcancer.org/forum/8/topic/777560?page=1  

    I don't know why the link isn't hot but you can cut/paste it into your browser.

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  • Omaz
    Omaz Member Posts: 5,497
    edited December 2011

    I am very sorry to hear that she isn't feeling well and I have missed reading her posts.  Plantlover, if you are in contact please pass along well wishes to her.

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited June 2012

    I would like to revive this post as I am curious what newly diagnosed women's doctors are telling them in regards to this question.  SO Bump!  Bump!  BUMP IT!!!

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  • rozem
    rozem Member Posts: 1,375
    edited June 2012

    kathleen - my onc said 2-3 years is the biggest risk of reccurance, but my second opinion MO said it could be longer b/c i am ER+ and her2, up to 5yrs, but i have seen/met women over 5 years who have had a reccurance.  But i believe most would happen prior to that 5 yr window

    for you who are ER- that 2-3 year window would apply

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited June 2012

    Bump!

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  • weety
    weety Member Posts: 1,163
    edited June 2012

    Yes, this thread was started over a year ago.  What is the new thinking about recurrences?

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  • midnight1327
    midnight1327 Member Posts: 1,475
    edited June 2012

    I was diagnosed last year in August with an er positive status, now some girls are asking me why they did not, put me on herceptin,  i am waiting to get my lab reports as i did not get any. Is Her2+ and er+ positive the same or different. i am on tamoxifen for 5 years, i did not know that herceptin was in our country as they had to fight to get it here, but it is funded free for one year. i am confused now what  status i am, i know its an estrogen positive one,  and i was grade three.  i had no recurrance, but they thought i did in my  other breast, turned out not to so a new primary one.  so is er+ and her+ the same thing or just related closely. thanks heaps

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  • lago
    lago Member Posts: 17,186
    edited June 2012
    Midnight ER+ is not the same thing as HER2+. ER+ indicates that your cancer "feeds" off estrogen. HER2+ means that you have too much of of the HER2 protein making your cancer grow faster. You should have been tested for this. Ask your onc. If s/he said you are HER2- then you don't need Herceptin.
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  • midnight1327
    midnight1327 Member Posts: 1,475
    edited June 2012

    i am awaiting my patholgy reports and then i can go from there, thing is i was confused as to what i was,  and i am on tamoxifen for 5 years.  but you have cleared that up for me. thankyou. about whether they same thing,   i just found out that i should of got the pathology results  at the time and waiting for them now to come. thanks heaps, ((((lots of Hugs)))))  P/s i knew i was postive something.  er+ or her2 ????

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited July 2012

    I can't seem to revive this thread so I will start a new one!

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  • weety
    weety Member Posts: 1,163
    edited July 2012

    What is the name of your new thread so I can add it to my favorites?

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited July 2012

    Topic: When do most recurrences for HER2 happen? Revived round 2...
    Smile

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  • starella
    starella Member Posts: 159
    edited September 2012

    bump

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  • Twiceasnice
    Twiceasnice Member Posts: 117
    edited September 2012

    Hi Ladies,

    Its been a while since I've posted--good to be back online.  My understanding is that the clock started when you finished chemo. And, I think there are many other factors that determine recurrence. Your ER/PR status certainly plays a role.  I've heard that the 5-year benchmark is a good indicator if you are ER/PR negative and HER2+, but if you are triple positive, like I am, then the risk of recurrence can extend a little further out.  

    Geminihalf

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  • jackboo09
    jackboo09 Member Posts: 920
    edited September 2012

    Hi Geminihalf

    I had heard a similar thing regarding longer term risk if you are ER+. I dont think PR is tested here in Uk. I still dont know if I am positive for that receptor. Must ask. Im curious why you are stage 3b with just 3 nodes and a 2cm tumour?

    Liz

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  • Twiceasnice
    Twiceasnice Member Posts: 117
    edited October 2012

    JackBoo09

    Sorry for the late reply! That's a good question about my staging.  I had 5 positive nodes after an axillary node dissection. They tested the surgical results twice at 2 different hospitals and I got 2 answers (I guess some of the nodes stuck together)  I had 3 micrometases and 2 macro--all in the sentinel nodes, I think.  

    I have a good girldfriend who just was diagnosed with Triple Negative, and she questioned my staging as well.   One hospital said 3 nodes and 1 hospital said 5.  I also had cancer in the margins following my lumpectomy though and some cancer in the dermis. Maybe that's why too?

     Thanks for weighing in.

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  • lago
    lago Member Posts: 17,186
    edited October 2012
    geminihalf if you have on the dermis then you are an automatic stage IIIB. source linky
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  • ilke
    ilke Member Posts: 7
    edited April 2014

    i would like to share about my last situation, i couldnt continue on Herceptin and Taxol due to heart problem just i could be able to take 4AC and radiotheraphy. i dont know what will happen to me. is there somebody in the same situation? and is there any friend to understand the fish result? thanx.

    (D17Z1x2, HER2x~20)(100) 


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  • lago
    lago Member Posts: 17,186
    edited April 2014

    ilke I know there are a few others that had this same issue. Adrymicin is powerful stuff. Also radiation is very effective too. If your FISH result said you were positive, then you are positive. Were you hormone positive too? 

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  • ilke
    ilke Member Posts: 7
    edited April 2014

    hi Lago, hormone positive too. i have started Femara. but doctors are still in discussion how they gonna give herceptin to me. i feel like that i am in an animal test. Really! the doctors are playing a card "my heart or my cancer" . in any case, i will refuse the medicine.  i have also read some articles that her2+ and er/pr+ should be treated differently than only her2+ ....

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  • lago
    lago Member Posts: 17,186
    edited April 2014

    Well that's a good thing regarding the hormone status. You still have the AI or even Tamoxifen guns. BTW what stage? How many nodes? How big was your tumor?

    Did you already finish the Adrymicin? I mean that can be tough on the heart too. How many Herceptin treatments did you complete?

    You should check out the triple positive thread. It's fairly active with lots of very knowledgeable women. Your more likely to find someone who had similar issues there: linky 

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  • ilke
    ilke Member Posts: 7
    edited April 2014

    Lago, i couldnt even start Herceptin, after 4 AC,they have stopped. i am in stage 3a. tumor size was 2.3 cm. and 5 metastasic lymph node and 2 isolated lymph cancer nodes. they have made lumpectomy. i have taken radiotheraphy. i am using now femara.... what about you? have you finished herceptin?


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