We are 156,641 members in 80 forums discussing 124,000 topics.

Help with Abbreviations

All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: DCIS and HER2/neu

Topic: DCIS and HER2/neu

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Mar 17, 2011 11:05AM

cycle-path wrote:

I had pure DCIS stage 0 and was not tested for HER2, which seemed fine at the time. Today, while surfing around the net I found this article: 

Protein Predicts Development Of Invasive Breast Cancer In Women With Ductal Carcinoma In Situ

The article is from May 2009, and there may have been more research in this area since then. But basically it seems to say that women with DCIS who are HER2+ are (or may be) at greater risk for developing invasive BC than DCIS patients who are HER2-.

My situation is this: as my sig shows, I've had lumpectomy and IORT. My oncologist is agnostic about Tamoxifen for me and says the decision is mine. Having read the above article, I'm wondering if I ought to ask for an HER2 test. If positive, perhaps that's another point in favor of Tamoxifen. If negative, another point against it.

Any thoughts? 

Log in to post a reply

Posts 1 - 17 (17 total)

Log in to post a reply

Mar 17, 2011 11:40AM J9W wrote:

I'm glad you asked this question; I don't believe I was tested for HER either. Or maybe it was tested and in my shock and awe, forgot what I was told. Apparently I need to go back to my doc and get the results again. 

DCIS, grade 3, 2009. Right mastectomy, tamoxifen for only 11 months.
Log in to post a reply

Mar 17, 2011 11:50AM cycle-path wrote:

I believe the protocol these days is that if you are truly stage 0, you are not tested for HER2 -- so if you're also stage 0 you were probably not tested.

As the article says, "Pathologists do not currently examine DCIS for HER2 expression because it does not impact treatment." But perhaps they're not thinking about the the TAM/no TAM issue of treatment.

I believe that Herceptin is recommended for most HER2+ women with invasive cancers, but Herceptin is not approved/recommended for DCIS and would probably be considered overkill anyway. But whether HER2+ in DCIS would cause TAM to be more strongly recommended seems to me to be another matter.

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
Log in to post a reply

Mar 17, 2011 01:55PM Deirdre1 wrote:

The problem is the progesterone is not valuable either because "it does not impact treatment".. Once I found out that the medical community didn't really know what the progesterone + test meant (there are even some pathologists suggesting that it not be run any more) I decided to request the HER2 test even though I was true DCIS.  The goal was to have it recorded now so that when HER2 in DCIS becomes important the results are available.  In other words I don't want the hospital hunting around for my slides in a few years because NOW it is important to run but they have lost it.. I took that potential out of the picture and had it run...  So now I know that I am progesterone + as well as HER2- and neither means anything TODAY..  Best, Deirdre

Log in to post a reply

Mar 17, 2011 02:47PM Beesie wrote:

I remember that there was a lot of discussion about this study when it first came out. It's interesting and it certainly leads to questions that should continue to be pursued. At this point though I wouldn't take this one to the bank.

First reason is the sample size, which was very small - only 106 women. Of those 106 women, 39 were HER2+ and 22 were found to have invasive cancer in addition to DCIS.  So we are talking here about the breakdown of the group of 22 women who had invasive cancer.  It certainly would be interesting to see if these results could be replicated in a larger study and hopefully that's underway now. But for me, it's hard to draw conclusions from results where the difference between one group and the other is less than 10 women.

Second reason is that while this is the most recent study, there have been other studies done that have looked at the same thing, and interesting, the results haven't always been the same. Here's an earlier study where the conclusion was exactly the opposite. This study compared the tumor pathology & HER2 status of 100 women with DCIS w/ a microinvasion vs. 100 women with pure DCIS. The conclusion here:  "We found that HER-2/neu gene amplification was inversely associated with the risk of invasive progression in DCIS patients, even though it correlated with high-grade lesions in both cases (DCIS-associated invasive cancer) and controls (DCIS alone)."  http://cebp.aacrjournals.org/cgi/content/full/11/6/587

I'm not suggesting that this 2nd study is any more reliable or credible than the first study. The sample sizes in both were simply too small.  But it points out that there is no clear answer to the question as to how HER2+ status affects DCIS.

Here's an article that talks about two other studies. Here again, each study came to a different conclusion.  HER-2/neu Overexpression as a Predictor for the Transition from In situ to Invasive Breast Cancer

Ultimately I wouldn't be surprised if it's found that having DCIS that is HER2+ does somewhat increase the risk of invasion.  But from anything I can find, we don't know that yet.  And there are some big questions that need to be answers, such as why it is that DCIS is about two times more likely to be HER2+ than IDC?  Does this mean that HER2 status changes as the cancer evolves from DCIS to IDC?  Or does it mean that fewer cases of HER2+ DCIS become invasive? Too many questions, not enough answers.  

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Mar 17, 2011 04:05PM cycle-path wrote:

Beesie, thanks very much for those articles. I think I'm going to step away from the keyboard for a bit but I will study those soon. As you say, more questions than answers.

Deirdre: I was told something about the ER/PR+ thing that I haven't seen mentioned elsewhere. One of my docs said that hormone receptor positive was a good thing because cancer cells that have good hormone receptors are cells that haven't evolved too far away from how normal cells look and act. In other words, cancer cells that don't have good hormone receptors are cells that have evolved into something entirely different and nasty.

I think you're probably right that the PR status isn't relevant for treatment. Chances are they report it because the information happens to come back when they're testing for something else (probably ER status).  

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
Log in to post a reply

Mar 17, 2011 04:19PM Letlet wrote:

I am ER- and PR positive, believe me it matters to my treatment. My oncologist wants me to take Tamoxifen which I would rather not take after all the side effects that she listed. I asked why do I have to since I am ER negative, she said that because I was PR positive and its a hormone and Tamoxifen is a hormone suppressant. I know if it matters that I have IDC not DCIS though...

Dx 8/27/2010, IDC, 3cm, Stage IIIa, Grade 3, 6/23 nodes, ER-/PR+, HER2+
Log in to post a reply

Mar 17, 2011 04:42PM Deirdre1 wrote:

Letlet it does matter about the ER+ (Estrogen) they now that estrogen + cancer is fueled by estrogen.  With progesterone though they only know that there is a "response" from the cell they don't know if it's a good response or a bad response.. There is an alternative medicine theory that implies that progesterone is actually a reducer of ER+ cancer - so it (progesterone) sort of goes to war with the estrogen cells which would be good too...  That you were ER- and PR+ is kind of unusual so I imagine that your doc isn't taking any chances and so put you on Tamoxifen..  It is interesting though - I think I'll do some current research and see if the medical community is now putting PR+ (even if the ER is negative) on tamoxifen and if they have seen good result..  Did you by chance get a second opinion on your tissue slides?  This is actually very interesting... (also cycle-path I hadn't heard that either!).. , Best, Deirdre

Log in to post a reply

Mar 18, 2011 10:04AM kayb wrote:

Hi Ladies - I don't mean to muddy the waters here. Just want to pass on some anecdotal information from my treatment. I was DXd with HER2+ IDC in the left breast last May and an MRI saw DCIS across a quadrant of my right breast. HER2 status wasn't run on the DCIS core biopsies. All of my treatment was based on the IDC. I did neoadjuvant chemo and I chose to have BMX due to a family history of cancer. Anyway -  when my path report came back after surgery, they found that my DCIS had reduced to one tiny area of a few mms. My Onc thinks the DCIS may have responded to the Herceptin I took, but of course no one knows for sure. 

As far as I can tell, there are no studies at this time testing whether or not DCIS would benefit from Herceptin but I wonder if that will change in the future. Forgive my cynicism, but using such an expensive drug on a type of BC that has other highly effective options may be one reason why it hasn't been done. It may have to wait until the patent runs out on Herceptin. 

DX May/2010, synchronous bilateral cancer, ER+/PR+, HER2+
Log in to post a reply

Mar 18, 2011 11:18AM Beesie wrote:

I just posted this reply in the wrong HER2 thread.

There are currently 2 clinical trials underway testing Herceptin on women who have DCIS that is HER2+.  And there is another trial testing a vaccine on women with HER2+ DCIS.  

http://clinicaltrials.gov/ct2/results?term=DCIS+and+HER2+and+vaccine

http://clinicaltrials.gov/ct2/results?term=DCIS+and+HER2+and+Herceptin 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Mar 18, 2011 02:36PM kayb wrote:

Thank you Beesie. I was aware of the vaccine trials but not the Herceptin ones. I saw that the neoadjuvant Herceptin trial that is now completed consisted of one dose of Herceptin. It will be interesting to see if that had any impact. By the time my surgery was done I'd had 16 weekly doses. No telling if my DCIS responded early on or needed several doses.

DX May/2010, synchronous bilateral cancer, ER+/PR+, HER2+
Log in to post a reply

Mar 20, 2011 07:16PM shelleydodt wrote:

I was in this trial for DCIS/her2/neu vaccine at Penn Medical. I was stage o ER and PR negative but her2 positive. It is extremely important to have DCIS tested. When you have her2 you are six times more likely to progress to invasive BC. The vaccine helps prevent this and is given in addition to lumpectomy or mastectomy. Www.shelleydodt.com for more info. Look up Dr. Brian Czerniecki on PubMed to read publications. Trial is currently recruiting.

Shelley D Dx 7/20/2009, DCIS, 2cm, Stage 0, Grade 2, ER-/PR-, HER2+
Log in to post a reply

Mar 21, 2011 09:46AM Beesie wrote:

Shelley, I think it's great that you were in the trial - I have such admiration for those who participate in clinical trials. Finding out more about how HER2 status affects DCIS and whether there are treatments that might be beneficial to those with HER2+ DCIS is very important.  

However I would caution everyone against putting too much weight on the research that showed that HER2+ DCIS is 6 times more likely to progress to become invasive BC. That's really scary information for anyone who has HER2+ DCIS but what's important to understand is that this was one small study with only 106 women; within that group, only 22 of the women (HER2+ or not) developed invasive cancer.  And per the links that I included in my earlier post, there have been studies that have actually shown exactly the opposite, i.e. that HER2+ DCIS is less likely to become invasive. So I don't think that anyone knows yet what effect HER2+ status has on DCIS. And that's why research is so important. We need to get this answer.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Mar 28, 2011 12:22PM shelleydodt wrote:

Just one invasive case of DCIS/Her2/neu is enough to convince me. After all the vaccine had no side effects! Further research has shown strong corelation between DCIS that is Her2 positive being much more prognostic for a poorer prognosis.

Shelley D Dx 7/20/2009, DCIS, 2cm, Stage 0, Grade 2, ER-/PR-, HER2+
Log in to post a reply

May 7, 2011 01:34PM peppopat wrote:

Up until this  past  week 4/2011  I  wondered why  all  DCIS patients were not  tested  for  their  HER2+  status. IT  MEANS NOTHING  and  I  am  living  proof  of that concern and  hopeI  can  put  that  needless  concern to  rest, once and for all.   MY  old  report  had  me at  HER2++. Follow  me so  far?

 Specifically, I  was  core-needled  biopsied  for  suspicious  malignant  neoplasm as  the  first  step   8/2010.  A month later I was  given  conflicting  pathology  reports  (got a 2nd opinion) of the findings--one  being  only  DCIS without  testing for HER2  status and the other  being  DCIS  with  an apparent  pseudoinvasion  of  Tubular  with  HER2 status  being HER2++.  It  was  labeled  "pseudo"only  because  the slides  were badly  degraded  by  the  first  pathologist.  In  other  words, the conclusion for  pseudo was based upon sloppy  seconds.

 8  months  later  to  Apr 2011  fast  forward  with  a wide  local  excision  AKA  lumpectomy.  and 3  senitnal  nodes  dissection.

Bottom line?  I  did, in fact  have a  tumor  with  some DCIS  and  .25 cm  of  INVASIVE Tubular  which is supposed to be,  for the most  part,  unlikely  to spread. NOT!!!!!   My report  indicated that  my  invasive portion is  so  totally  negative for HER2  but,unfortunately  I ended up with a microinvasion of cancer in one of  3  sentinel nodes  tested.

I  will not  entertain  the thought of  completion  axillary node dissection  and. It is a tough  call, though.

Abnormal MRI: Mar'09, Dx: Aug,'10 DCIS w,Grade 2, ER+99%/PR25%+ HER2+, then 4/20/2011, lumpec, w/SLND Pure Tubular confirmed, HER2 status NEGATIVE, 1/3 node+ for micromet, Oncotype score--28, no chemo, no rads--thank u very little Dx 8/6/2010, <1cm, Stage I, Grade 1, 1/3 nodes, ER+, HER2-
Log in to post a reply

May 7, 2011 02:12PM cycle-path wrote:

Pat, thanks for posting. Good info.

I would not get the axillary node dissection, as recent studies have shown it is not valuable. Current thinking is that it's still a good idea to test sentinel nodes because if there's invasion, many docs want to do chemo. But they feel there's no medical reason to take out nodes for any other reason, even if invasion is found in the nodes tested.

I don't have the studies at hand -- pretty recent stuff -- but post again or send me a private message if you can't find them and I'll hunt around.

Thanks again! 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
Log in to post a reply

May 7, 2011 04:12PM peppopat wrote:

My sig line  still shows me  with  inaccurate  Dx. I am now Stage IIA  and  I will  NOT do  chemo--no  way,  no  how. I  think  I  may  actually  be  abole to get  away  with not  having completion Axillary  dissection,either.    Microinvasion in  1  sentinel  node  is  not,anymore, reason to turn  to  chemo.  If yoiu  were  in  my  situation,  and given  the option, would you  radiate  your  axially  area, just  do MRIs until something  shows up, or  do  the  dissection?  Just  curious.

Abnormal MRI: Mar'09, Dx: Aug,'10 DCIS w,Grade 2, ER+99%/PR25%+ HER2+, then 4/20/2011, lumpec, w/SLND Pure Tubular confirmed, HER2 status NEGATIVE, 1/3 node+ for micromet, Oncotype score--28, no chemo, no rads--thank u very little Dx 8/6/2010, <1cm, Stage I, Grade 1, 1/3 nodes, ER+, HER2-
Log in to post a reply

May 7, 2011 04:22PM cycle-path wrote:

Pat, you might want to fix your sig line to correct the info. 

I don't think anyone can honestly and truly say what they'd do in a different situation. However, given what I've seen on the internet I think I'd shy away from radiation to the axilla. I know I would NOT let them do an axillary dissection. That's for sure.

You might want to read this thread  http://community.breastcancer.org/forum/70/topic/762229

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+