HER2 testing

Sandra, we can determine if DCIS is HER2+. Some facilities choose to do HER2 testing on DCIS samples, other facilities don't. The real problem is that as of yet, we don't know what that means.  

While DCIS is just one tiny step away from IDC, DCIS cells in some cases act differently than IDC cells.  DCIS does not react in the same way to chemo, for example.  And it appears from quite a number of studies that HER2+ DCIS may not act the same way that HER2+ IDC acts.  So it's not that DCIS can't be HER2 tested; it's that the conclusions we may draw about HER+ DCIS (conclusions based on how HER2+ IDC acts) could be completely wrong. Some studies have actually shown that HER2+ DCIS is less likely to become invasive than HER2- DCIS.  That seems unlikely, but it would explain why it is that 40% - 60% of DCIS is HER2+, while only ~20% of IDC is HER2+. 

As for needing more research, the fact is that a lot of research has already been done on this.... but the results are contradictory from one study to another.  A lot more research is currently underway.  No one is dropping the ball on this; we just don't have the answers yet. 

KimD - I fight with that all the time. I am still on HRT but not as much. Trying to come off slowly. I was ER-/PR- with DCIS stage 0. They refused to test for HER2 here at my facility. Said it was not necessary. They did offer to test IF I wanted to take part in the study. At the time I was so sick from the 2 lumpectomies and starting rads I declined. Probably should have given in just to get the test.

I am on Cenestin at its lowest dose and I have begun to drop 2 doses a week. I have taken HRT for 12 years. They let me stay on it for now because I was ER-/PR- but also because I am on prednisone for my auto immune disease. It is supposed to help some with that drug robbing the bones. I plan to drop another dose next month.

KimD - Haha I tell you it was a fight to even drop 1 pill. When I got the cancer diagnosis the Oncologist said to go off immediately. So I tried it. I stopped cold turkey and ended up at the ER admitted to the hospital because of heart palps, extreme sweating and all over shaking. I walked into her office when they released me without an appt and she told me not to stop cold turkey again. So I dropped one pill a week while going through all my cancer treatments. After wards I dropped one more pill. It is very hard. My skin crawls, I am angry, my heart skips beats and I shake for those 2 days. I am going to try to drop one more pill next month. Not sure how I will do it.

I read a lot of the stuff from Suzanne Somers. I think she is on to something but she takes a lot of supplements also. She also has the money to get personal care constantly from her Drs. Something we do not.

My doctor at the University of Pennsylvania, Dr. Brian Czerniecki, published a paper 5/09 about which DCIS is most likely to progress to invasive BC. He states that Her2+ DCIS is 6 times more likely. I was diagnosed with DCIS and had it tested for Her2+, it was highly positive 76% of cells stained for it. At Penn, they have a clinical trial for a BC vaccine for DCIS that is Her2+. I got it in 2009. So far 70 women have been in the trial and NOT ONE has had a reccurrence. Dr. Czerniecki is starting two more trials next month for women with invasive BC, that is ER+ or triple negative for vaccines. The vaccines are made out of cells they take out of your body and it teaches your immune system to surveil for cancer cells anywhere in your body. Supposedly vaccines are better at killing BC stem cells, which frequently survive chemo and cause metastatsis. For me vaccines will be the way of the future, they are so much less toxic and I had no side effects at all. Dr. Czerneicki believes that all BC can be targeted by thwarting all the HER family, Her1, 2, 3, 4. They have recently found that many BC stems cells have her2 receptors on them even though the patients have tested Her2 negative. Women should insist on having their HER2 status. Years ago, they thought all DCIS was the same. 

I think the research that's being done on how HER2 status impacts DCIS prognosis is critically important.  A word of caution, however.  Dr. Czerniecki's study that concluded that HER2+ DCIS was six times more likely to become invasive involved 106 women.  There have been many other studies - all about the same size or just a bit larger - that have shown a very wide range of results. Some concur with Dr. Czerniecki's findings.  Most have found that HER2 status has no impact on the likelihood of DCIS to become invasive.  And some have even found an inverse relationship, i.e. that HER2+ DCIS is less likely to become invasive. Here is one of those studies: HER-2/neu Gene Amplification in Ductal Carcinoma In Situ of the Breast

I'm not suggesting that the study that I linked provides the definitive conclusion, nor am I suggesting that Dr. Czerniecki's conclusion is not correct.  What I am saying is that we don't know.  The evidence is mixed and to-date there have been no conclusive studies.  The following article from Clinical Oncologist on the management of DCIS, from late 2012, sums it up this way:

"Interestingly, the distribution of many markers seems to differ between pure DCIS and tumours with invasive components. Her-2/neu, which traditionally predicts a more aggressive disease course in invasive breast cancer, is expressed in a greater proportion of DCIS tumours than in invasive cancers; however, there is still controversy as to whether this increased expression predicts for recurrence or invasion independently of other factors in DCIS. However, because of the high rate of overexpression, studies are ongoing to evaluate the role of traztuzumab and other anti-Her-2 therapies in the DCIS population."  The Management of Ductal Carcinoma in Situ: Current Controversies and Future Directions

I applaud anyone who participates in a clinical trial, and I hope that these trials and future research on HER2+ DCIS finally do reach some definitive conclusions.  I just caution anyone from concluding too much from a single, very small research study.