DCIS and HER2+

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mevanatta
mevanatta Member Posts: 38

I recently had a lumpectomy (Bi-lateral reduction removing 1 pound per side) CLEAR MARGINS. Tumor was 2mm  (not cm) 

Rad oncologist, Surg doctor and Med oncologist say outcome is good.  Decided not to have radiation.  Said it would only make difference by a few percentage points.  Will start Tamoxifen now.  Saving radiation in case it comes back...

I was going to join a clinical study on Her2+ DCIS patients.  They randomly give the patient Herceptin. Some patients get it. Some don't.  Guess they want to see if this can stop the abnormal cell growth? http://www.mgh.org/cancer/cstudy/B43_Consent_PreEntry.pdf  Evidently, I would need to proceed with the radiation to be in the study.

Does anyone else here have this diagnosis?  Should I be more worried that I will have a reoccurance because I am Her2+ even if I had really clear margins?

Comments

  • louishenry
    louishenry Member Posts: 417
    edited March 2009

    Hi. I also had about 2mm of DCIS. The rest of my calcs were normal. I did not have rads recommended to me as well, but when I had DCIS two years ago, they were not checking HER2. I always read that HER2 was meaningless in DCIS, but maybe it's different now. Beesie should be around in a while. She is our DCIS expert!

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2009

    The reason that a number of clinical studies are underway or planned for HER2+ DCIS is because at this point, doctors really don't understand what role, if any, HER2 status has for DCIS.  So there is interest in knowing more.  So far this has not been studied much and the information to-date has been inconclusive and conflicting.  For example, one small study concluded that HER2+ DCIS was more aggressive while another small study concluded that HER2+ DCIS was less aggressive.  What is known is that at least double the % of women who have DCIS are HER2+ vs. women who have IDC, so this either means that HER2+ DCIS is less likely to become invasive, or that HER2+ DCIS may convert to become HER2- IDC if the cancer does become invasive.

    Because the impact of HER2 status on DCIS is unknown, HER2 status for DCIS is, for now, considered irrelevant.  Unless you are part of a clinical study on this issue, there is no difference in treatment if your DCIS is HER2+ or HER2-.  Additionally, Herceptin is not approved for women who have DCIS only (again, except for those who participate in one of the clinical studies).  For these reasons, often HER2 status isn't determined for women who have DCIS only or these women may not be told their HER2 status (because it would only lead to questions that can't be answered).

    Here's some information about HER2 status and DCIS.  Basically it says that at this point, we don't know what, if any, affect HER2+ status has on the likelihood that DCIS will recur.  http://www.oncology-times.com/pt/re/oncotimes/fulltext.00130989-200704250-00016.htm;jsessionid=JKKH71373ycMXDQKwQRgTp0vPMfjpqGS6JQvGszJgwGBlnn3TDGj!-256325120!181195629!8091!-1

    And here is information about NSABP Trial B-43:  http://www.grcop.org/Attachments%5CB-43%20FastFacts.pdf  What's significant about this trial is that it appears that patients only receive two doses of Herceptin.  This is quite different than the treatment given to patients with invasive breast cancer that is HER2+.  They receive Herceptin for every week (or every 3 weeks) for 1 year.  This is a very important difference because Herceptin is a serious drug with the possibility of very serious side effects.  So for someone with pure DCIS who does not have the risk of mets, it would not make since to risk a full regime of Herceptin.  On the other hand, it would be interesting to see if a small dose of Herceptin has any effect on reducing recurrence rates for those are have HER2+ DCIS.

  • mevanatta
    mevanatta Member Posts: 38
    edited April 2009

    Beesie

    As you found out on another thread, I decided not to do the radiation. So I can not be in the clinical trial. 

    However, this study is interesting to say the least. 

    Mary 

  • Tabbygirl521
    Tabbygirl521 Member Posts: 193
    edited April 2009

    I just signed my consent form to have my tissue tested re: HER2, to see if I can enter the clinical trial...now I just have to get my surgery scheduled! My med onc was very excited to be able to tell me about the trial - she's a very enthusiastic and supportive person and she has high hopes re: Herceptin therapy for DCIS with HER2+. If I get qualify, I will report anything useful that I learn. :)

  • Eloise
    Eloise Member Posts: 137
    edited January 2011

    Coming into this dormant thread because I signed consent today for tissue testing for the B-43 trial -- it's still going on.  I'll know in 1-2 weeks whether I'm HER2+.  Would I be completely nuts to participate if it comes back positive?  I wouldn't be doing it for the potential benefit of the Herceptin so much as for the desire to contribute to science. 

  • peppopat
    peppopat Member Posts: 90
    edited January 2011

    I  don;t  understand someone's  sig line here!!!   How in the world  does someone have DCIS  with  lymph node of 1/1? I presume that  means the sentinal node was +?   If so,  isn't  that automatically  stage 1????

    Please enlighten me!

  • Beesie
    Beesie Member Posts: 12,240
    edited January 2011

    Yes, you're right.  A positive node would automatically move someone up to at least Stage I. However in mevanatta's case, I think the "1/1 nodes" in her diagnosis line was just an error; if you look at her current profile and updated diagnosis line, it indicates "0/1 nodes". 

    There are unfortunately a lot of doctors who don't properly explain a diagnosis.  Often we see women who initially are diagnosed with DCIS from their biopsy who then find out from a subsequent surgery that they have invasive cancer or positive nodes and yet they still state their diagnosis to be DCIS - and believe that it is DCIS.  Their doctors didn't explain that with the discovery of invasive cancer and/or a positive node, the diagnosis changed to IDC. Similarly, there are a lot of women whose pathology reports state something like "area contains DCIS and inflitrating carcinoma" (approx. 80% of women with IDC also have some DCIS) and they interpret this to be DCIS, not IDC.  So we see a lot of women on this board who are DCIS Stage I or Stage II or even Stage III.  We also hear every so often about women who progress "directly from DCIS to Stage IV".  However in every case that I'm aware of where someone has indicated that they were initially diagnosed with DCIS and then developed mets (without an invasive local recurrence in-between), it has turned out that the initial diagnosis was not DCIS - some IDC was present as well. So there is unfortunately a lot of misunderstanding about diagnoses and staging.  

    It's too bad that the profiles that we complete for our diagnosis lines aren't set up in such as way that they don't allow diagnoses that don't exist (i.e. DCIS that is anything other than Stage 0 and node-negative).  

  • peppopat
    peppopat Member Posts: 90
    edited March 2011

    Beesie,

    Beesie,

    LaughingWhat  would we do  without  you?   Thanks so much for all you do for this group. 

    to radiate  or not radiate---that  is the question. 

      It's now into March and still I've had no surgery  BUT now the time has come. I  am trying to  make arrangements  for lumpectomy.   My 1.8 cm  DCIS is Her2+ but  the  suspicious for 2-mm tubular cancer is HER2  negative  I'm wondering whether having radiation is really necessary.   It's my understanding that  Tubular cancer  is in a  special class that doesn't require  as much treatment as regular IDC.  That's what  i was told.   As  for Her2+, this is the only part of my  diagnosis that  still dogs  me.  

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

    Hi Sammy, I see you are new here????? Why the attack on Beesie? She is greatly appreciated here and has been very helpful for many of us, especially for any new ladies coming in. Just find it kinda strange that a new person would be attacking her???

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2011

    peppopat,  

    Good luck with your lumpectomy!  And how interesting that your DCIS is HER2+ but the "suspicious for tubular" is HER2-.  That supports the hypothesis that the HER2 status of DCIS may change if a cancer becomes invasive.  And that in and of itself is a reason why we shouldn't worry about the HER2 status of DCIS.... at least until medical science tells us something different.

    From Dr. Susan Love: Should I have my DCIS tested to see if it is HER2-positive?

    HER2 status is not useful in guiding treatment for ductal carcinoma in situ (DCIS) because it is more common for DCIS to be HER2-positive than it is for invasive cancer to be HER2-positive (we don't yet know why this is).

    Also, we have no data on treating women with DCIS with trastuzumab (brand name Herceptin), which is the treatment used for HER2-positive tumors. This is, though, an area of active research. http://www.dslrf.org/breastcancer/content.asp?CATID=15&L2=3&L3=7&L4=0&PID=&sid=132&cid=842

    .

    And from a presentation at the 2010 San Antonio conference:  Does HER2 Status Influence Outcomes in DCIS?

    As it turned out, all of the patients in the study, including those with HER2-positive disease, were recurrence free at a median follow-up of 58 months.

    With no recurrences to analyze, Dr. Halasz and colleagues could not say whether HER2 status puts patients at more or less risk for recurrence.

    "It's still an interesting question - whether HER2 status influences outcome in DCIS," she said. "It doesn't seem to influence recurrence when patients are treated with radiation and surgery," she concluded http://www.medscape.com/viewarticle/734028

    .

    .

    Daisy6/Erica31/Janewell/etc., how delightful to see you crawl out from under your rock as sammysmom.  I'm so glad to know that you are not attacking me or anyone else (or at least, that you had the sense to delete whatever attacks you'd written). I hope - and I'm sure that others share my hope - that you live up to your words, whatever screenname you happen to be using. 

    .

    Edited to try to fix the links (don't know why they are being so problematic today!).  The Susan Love link seems to still not be working.  Try instead just googling the exact words to the question and the correct page will pop to the top of the search list.  As for the Medscape link, if you aren't registered with Medscape (patients can register; you don't have to be a doctor), you won't be able to see it. 

  • pbgirl
    pbgirl Member Posts: 18
    edited March 2011

    Bessie,

    Do you know anything about a clinical trial where instead of rads, "radioactive seeds" are implanted directly in the area of DCIS?  I gather they have been doing this for 30 years with prostate cancer.  My surgeon mentioned it to me.  I am not finding very much info on it and I have not seem the radiologist yet because I need a second surgery first (margins not large enough).  I would appreciate any info. 

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2011
    lmr1963,  I don't know much about different radiation methods.  I had a single mastectomy and didn't require radiation so I've never done much reading on it.  I am aware of the radioactive seeds that are used for prostate cancer but I don't know if has been tested for breast cancer.  Have you posted this question in the Radiation Forum on this board?

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