Herceptin Yes or No

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mom2one
mom2one Member Posts: 138

I am 42 years old and have had 2 lumpectomies for DCIS.  The margins came back unclean after each lumpectomy.  I also had two microinvasions but combined they are not equal to 1 mm.  DCIS was 6+ cm.  Just had a bilateral mastectomy on March 28th and am still recovering.  Tissue Expanders were placed at that time.  My cancer was in the left breast but I went ahead and had the right side removed as well.  I was grade 3 HER2+ DCIS w/microinvasion.  After the BMX I have been told I am cancer free with no lymph node involvment.  My oncologist does not know what to do with me.  He said if there was no invasion he would do nothing if I had more invasive cancer I would be treated w/chemo and Herceptin.  I am being sent to Duke University in NC in the next 2 weeks to have the specialists there review my case.  Anyone else experience anything like this or know of any studies out there I should be aware of?  I am a little scared to do nothing but I know some treatment can be bad for you if it is unnecessary.  Any tips or questions I should ask at Duke would be appreciated.  Thank you all so much for your input.

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  • Slainte
    Slainte Member Posts: 152
    edited April 2011

    Was your lump 6cm or 6 mm? In most cases grade 3 , her2+ tumours are treated with chemo and herceptin even if there is no lymph node involvement as they are considered more aggressive tumours. I had chemo called FEC-D ( 6 rounds) and am herceptin for year.

  • Scrabblelady
    Scrabblelady Member Posts: 261
    edited April 2011

    I was in  a similar situation as you.  DCIS with microinvasion of 1.2 mm with  no positive lymph nodes.  I decided to have a sinle mastectomy and thought that that would be the end of it.  However, the tumor was HER2 positive.  My oncologist highly recommended Herceptin as it will greatly decrease the possibility of recurrence.  Unfortunately, Herceptin has only been tested in conjunction with chemo. I read as much as I could about  the pros & cons of this treatment and finally decided to be aggresive and take the drugs. I finished the A/C in November and the Taxol in February.  Now I am on Herceptin until November.  The chemo was not as horrible as I had anticipated.  It wasn't pleasant, but it was manageable. The pre-meds really worked for me.  And loosing my hair wasn;t that bad.  I guess if I was working, I'd have probably bought a wig.  But I'm making it through with scarves & hats.

       If you'd like I can send you the links to articles about the Herceptin and small tumors.  If I can;t find the links, I can email you the articles. My biggest concern was the cardio-toxicity of the Adriamycin and the Herceptin.  I finally decided that since I was not in a high risk group for heart problems, I would go ahead with  the chemo.  Duke University is a good place to go. Being in Texas, I went to MD Anderson for treatment.  My best advice is to do as much research as you can before you meet with the doctor.  Right all your questions down in a notebook.  The few times I didn't, I would forget to ask the dr.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    i have a question on another thread "At what point did you get Herceptin" which is probably related to this thread.

    hope we can share information-- for those have done Herceptin already-- you probably have tons of copies of results of clinical trials in your hand..

    do you have something about -- First-line Herceptin monotheraphy? (meaning Herceptin only without the chemo as first- line of defense- I suppose)

  • j414
    j414 Member Posts: 321
    edited April 2011

    Link below is to an article discussing an MD Anderson study that found Early stage - less than 1 cm - her2+ tumors are at an increased risk of recurrence and that herceptin should be considered

    http://www.mdanderson.org/newsroom/news-releases/2008/early-stage-her2-positive-breast-cancer-patients-at-increased-risk-of-recurrence.html

  • mom2one
    mom2one Member Posts: 138
    edited April 2011
    My DCIS was 6+cm so it was very large.  The microinvasive cancer was in two places and added up to less than 1 mm.  j414 I appreciate the article link you sent.  Scrabblelady if you could either send me links or email the articles you have that would be great.  My email is lynettemclean@richgrafx.com.  I am trying to get information before I go to Duke but it seems confusing right now.  Thanks so much!
  • orange1
    orange1 Member Posts: 930
    edited April 2011

    Normally for Her2+ I am in favor of aggressive treatment.  But considering the invasive part of your cancer is so tiny, unless there was LVI present, I would guess your risk is pretty low.  If the invasive part of your tumor was positive for LVI, I would consider the chemo/herceptin because there is a greater chance that it was able to spread.

    If needed, you can get through the Chemo. Side effects are temporary.  But chemo induced menopause may be forever, and menopause su**ks.

  • jpmercy
    jpmercy Member Posts: 189
    edited April 2011

    mom2one-

    I am your case ALMOST EXACTLY! and im a mom to one also! lol! I was originally dx with DCIS opted for BMX too it was over 3cm and i had multifocil microinvations with the largest site around 2mm. (so my dx was a bit differnet but around the same boat as you). I was grade 3 and HER2+++ i am also 30 so my onc was scared of me! he didnt know what to do either he sent me to a major cancer center in my area who said to do nothing more, went back to original onc and decided that there was defiantely a risk and that i wanted the herceptin with my age he wanted to be aggressive and i didnt want to look back wishing. i realized at that point that doctors dont know everything htey tell you the best they can based on what they know but with such small tumors the research just isnt out there my onc told me with digital mamos they are catching this much earilier with DCIS and that is a great thing but a tough call w. the microinvasive stuff! anyway you have to just go with your gut and what makes you most comfortabel the good news is either way your prognosis is very good. also, i went with the herceptin and a lower dose weekly regimine and less toxic dose of chemo, i did 12 weeks of weekly taxol and herceptin and now im on hercptin every three weeks. the taxol was not bad to tolerate, i worked throughout and DID NOT LOSE MY HAIR ON MY HEAD I USED PENGUIN COLD CAPS AND KEPT ALL THE HAIR ON MY HEAD! i did loose my eyelashes and body hair but have all the hair on my head and it made the process so much easer! PM me if you would like! hang in there your second opinion will help and also remember whatever you decide you have a good prognosis go with your gut!

  • mom2one
    mom2one Member Posts: 138
    edited April 2011

    jpmercy:  Thanks so much for your advise.  I am anxious to see what Duke says about my treatment.  I feel that doing nothing seems wrong somehow.  I will let you know what they say but I am writing down the information you gave me and I will ask about this type of treatment plan for myself. 

  • Louisa2
    Louisa2 Member Posts: 49
    edited April 2011

    I am confused about this Herceptin business.  My biopsy confirmed ER+ and PR+ but did not test for HER2.  I then had a lumpectomy, and the pathology report from that says "unknown" with regard to all three receptors.  I am about to undergo a unilateral MX with immediate tissue reconstruction on May 2.  Should I insist beforehand on an HER2 test?  Can they do that just from the llumpectomy tissue?  I know I asked the doctor about this, but I forget what she said.  I was still trying to grasp "mastectomy" just for DCIS.  

    I'd appreciate any insights, or maybe a link to an explanation somewhere of when to be tested for HER2 receptors?  Thanks so much. 

  • mom2one
    mom2one Member Posts: 138
    edited April 2011

    Louisa:  I was told I was HER-2 positive a week after my biopsy.  I also was told I had DCIS but after two failed lumpectomies the mastectomy was necessary.  2 doctors stated my cancer was caught early and small so I know what you mean about trying to grasp mastectomy as the treatment.  I was ER and PR negative.  I also found this out right after biopsy so I am surprised that you were not tested already.  After my lumpectomy my pathology report came back with the same findings.  I am still learning about HER-2 but it seems to be slightly more aggressive than some cancers, however, caught early it can be controlled.  I was told I may have to be on Herceptin for a year because of it, but I am still waiting for a treatment plan.  Good luck to you!

  • NanaA
    NanaA Member Posts: 293
    edited April 2011

    Louisa2  The lumpectomy tissue should have been tested by the hospital for HER2 but they also should have sent it out to a lab for FISH testing which is more accurate.  I think it usually goes to California and takes a week or 2 to get the results back.  In fact I had my 3rd  lumpectomy which finally got clean margins before they got the result back showing HER2+++.  I ended up doing 12 weekly rounds of taxol with herceptin every 3 week for a year.  They started the taxol and herceptin the same Day.  I finished Herceptin in March last year.  I am past my 2 year NED now.  Herceptin is not that hard to do.  I missed one dose when I was ill and did not want to bring germs into the oncology unit and the doctor did not think I needed to make it up.  I don't think they are really sure what is the best length of time to give herceptin is yet.  Some studies have been for only 9 weeks.  The 1 year comes from the clinical trials done on Herceptin being this length when they were originally testing it.  As far as I know the only testing they can do for HER2 is testing tissue removed .  Best Wishes  Annette

  • FrankTsu
    FrankTsu Member Posts: 1
    edited May 2011

    Louisa2
    There is a little bit more recent review of Herceptin
    http://www.dailyrx.com/news-article/her2-breast-cancer-treatment-enhancement-horizon-13808.html
    and that combining Herceptin with a therapy that stimulates lymphocytes greatly increase its effects. 

  • Louisa2
    Louisa2 Member Posts: 49
    edited June 2011

    Thank you all for your responses.  When I asked the oncologist about why my tissue wasn't tested for HER 2, she said that it would be extremely rare for a DCIS patient to have this and that I didn't need to worry about it.  Does that sound OK or not?  And since I've already had the mastectomy, is it now too late to have that test?

    Thanks for any insights.

  • Slainte
    Slainte Member Posts: 152
    edited June 2011

    I just did a quick google search on DCIS and her2 and it seems it is not that rare to be her2+ with DCIS. One paper said that 108 women with DCIS were tested for her2 and 37% were positive. The her2 positive women were more likely to have the DCIS develop into invasive cancer. I'm no expert but I would ask again to have it tested. They should have banked your tissues so they should be able to test it. Not sure about everyone else, but I'm a little tired of being "that one in a million" lol. So when docs tell me something is "rare" or "unlikely" I tell them that I'm already that person who has been struck by lightening more than once and I make them do the extra tests lol



    Good luck

    Christine



    PS. I also just took a quick look on DCIS thread and found a couple people with DCIS who were her2+ on their diagnosis status at the bottom of the page

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