What defines a lower-risk HER2-positive tumor?

Mary Jo-

I've consulted with several medical oncologists and can't make up my mind as to who I want to be followed by.  I'm fortunate to have a wonderful radiation oncologist who is always  available to answer any questions and help me through any concerns. But as far as medical oncolgosts most are a tough breed. Most down play my diagnosis despite being her2+++. I can't find a happy medium. I had 99% DCIS with a "focus of less than 1mm of microinvasive carcinoma in its greatest dimension."  Well the her2+++ makes me nervous but all the oncologists keep focusing that the invasive component was less than 1mm so they all say that I just had DCIS. I like my diagnosis being down played except when I have concerns, I want them to be taken seriously.

So to answer your question, according to all of my oncologists, if it's a tiny mircroinvasive(less than 1mm) her+++ than it's not as serious.  

If you don't like your oncologist then it's time to change.  If you don't know of another good one. Try to attend one of your local breast cancer survivors support groups and ask around for some names.Word of mouth is the best way to find a good doctor.

Wishing you the best. 

Blue Willow do you have a cite for the article on lower-risk HER2 tumors? I  have not seen much on differentiating between high and low scores.  I was borderline ICH, 2.3 on FISH and then to my surprise and my doctor's-- HER negative on the oncotype (and a lowish score because of HER2 negative -- they use a different test --) 

I am still going with Herceptin (and chemo -- due to possible Her+ and tumorsize).  I am now starting to look at the stemcell theory regarding HER2 -- and whether borderline HER- will benefit.  It helps me tremendously to read the articles myself.

I know there is a recent article (made it to the NYTimes) that cites and reccomendation to do Herceptin even in the instance of smallest tumor (even dcis) with a HER2+ level.  I have to think that because you are all so early stage -- Stage 1-- the outlook is excellant -- 

Blue willow that is one beautiful baby !!!!!!

I downloaded some of the slides from the San Antonio Breast Cancer conference. There were two (Sessions 701 and 702) with retrospective studies of patients with small HER2+ node negative cancers that didn't get chemo and therefore also didn't get herceptin. One looked at those with tumors less than 1 cm and the other less than 2 cm. In both cases, the 5 year recurrence rate was pretty high. In the MD Anderson study which focused on cancers < 1  cm, the 5 year recurrence was 23%. They looked at cases from their own institution and checked by also looking at cases from a couple of European cancer centers - the results were simiilar. The New York Times article was on the results of the MD Anderson study.

The  conclusion of the other paper said no HER2+ patient should be considered 'low risk'.

This made me very glad that I decided to do the full chemo and Herceptin.

BTW, as far as the question on HER2+ reading - normally, one is only considered HER2 positive with the +3 reading (which comes from a staining test), I think that if the reading is marginal (+2) they are suppose to do the more accurate but more expensive/difficult FISH test to see if it is HER2+. 

Bludasher

On this Study you said they compared 2 groups that did NOT get Chemo

"There were two (Sessions 701 and 702) with retrospective studies of patients with small HER2+ node negative cancers that didn't get chemo and therefore also didn't get herceptin. One looked at those with tumors less than 1 cm and the other less than 2 cm. In both cases, the 5 year recurrence rate was pretty high...< 1  cm, the 5 year recurrence was 23%"

Im wondering if they compared that to Her2- with that Size Tumor 1cm & under 2 cm That did NOT get chemo & what their recurrance score was.

I didnt think there were that many Her2+  with Tumors of 1-2cm in size that skip Chemo. 

Pam

Thanks Bluedasher.  I just went & looked at 701:

I have a terrible headache right now- so cant read & think.  But this was the main thing I noticed:

~~

 HER2-Positive Breast Cancer:

 Aggressive breast cancer subtype (~20%)

 Worse Disease Free and Overall Survival.

less), available data regarding HER2-positive disease

recurrence at 5 and 10 years is limited.

~~~

So It looks like most of the trials had Node Positive.   Tumors less then 1cm with Node negative is limited for data...as 4 of the 5 trials excluded those Patients.

Does anyone interpret this different?

Pam

Liz, I think discussion of the numbers reported at San Antonio is entirely relevant to the question that bluewillow asked at the start of this thread about lower risk HER2+ tumors.

Those very encouraging numbers you mentioned for T1a and T1b survival were for the whole study group irrespective of HER2 status. Since 867 of the group were HER2- and only 98 were HER2+, the experience of the HER2- patients dominates the number. 

22.9% of the HER2+ patients had a recurrence (Table 2, 21 events = 77.1% recurrence-free survival). All the patients were T1a or T1b - the poster doesn't give us the information to separate out the T1a and T1b rates but 22.9% is pretty high to me.The confidence interval says that the real number is probably between 67 and 84.5% for disease free survival (i.e. 98 people isn't large enough to pin the number down very tightly). 

13.6% of the HER2+ patients had a distant recurrence (Table 3). Again a lot higher than the overall number.

Being hormone receptor negative also about doubled the chance of a recurrence or distant recurrence.  That's good news for jgallo and dejaboo; not so much for us two blues. 

I'm still pretty hopeful that getting chemo and Herceptin makes my likelihood of a recurrence much better than these numbers.

Pam, the BCIRG 006 trial included some node negative patients but the tumors were all larger than 2 cm. But I'm not worried about the trials not including those with small node negative tumors. I expect that the same chemo plus Herceptin treatments that reduce recurrence and improve survival for those with bigger tumors will help those of us with smaller tumors. The question has been - if the risks of recurrence are already quite small, is there enough benefit to be worth doing chemo and Herceptin. For example, if the risk of recurrence without chemo and Herceptin was around 7% (like it is for HER2- small tumors), would reducing that a few percent be worth the SE and risks of chemo? That was what made the decision to do chemo difficult for me. 

To me the significant thing reported here is much higher risk of recurrence then was thought for tumors <1 cm when they are HER2+. The news came during a particularly bad chemo week and made me confident that going through chemo was the right thing.

Mississippi girl-

I think we're very close in diagnosis.  I too had DCIS (99% according to my doctors) and "focus of less than 1mm in it's greatest dimension of microinvasive carcinoma" according to my pathology report. I ended up being stage T1mic (below stage T1a), Er-, PR-, and Her2+++ and node negative. My slide was re-examined to be sure there was nothing missed.  I was only 38years old at the time (Feb 08').  To make you feel better about your treatment here's my story I ended up consulting with 10 oncologists regarding my treatment and all concurred no chemo and no Herceptin since they all felt the risks of chemo/Herceptin outweighed the benefits for me. I consulted with a wide range of oncologists ranging in years of practice,  some worked in major cancer centers(Dr. Eric Winer from Dana Farber in Boston and Yale in CT, Sloan Kettering in NY(my oncologist is originally from there) and some were in private practice, I even e-mailed John Hopkins and was told the same etc. I was told Herceptin isn't given without chemo since this is not the standard protocol and there are no concrete studies proving its effectiveness without chemo. Now this is only my story but I know of few others who fall in this category too.  You have to remember that we are a very rare group and our cancer was found very very early. 

You had asked about a vaccine trial and there is one either going on right now or will be in the spring at John Hopkins.  For more info you can call 410-955-2000 and ask to be connected with Dr. Leisha Emens office.  

Wishing you the very best and remember you are not alone.

Liz & Mississippi girl, I'm new to this board and just have to jump in here.  I was also diagnosed with DCIS-L in 2004 and choose double mast. There was a spot of microinvasion>1cm...so stage one...all nodes clear...no chemo or radiation rec.  In this dx today...I believe it is handled the same way.  Here's my story...I am among the 2% of people that didn't get so lucky. Giving you facts...not trying to scare you. In 2007 I was diagnosed stage 4...spread to lung,chestwall & liver ...it had traveled by blood before surgery. I responded great to 5 rounds of TCH and have stayed on Herceptin for 14 months. I just found out it traveled to my brain and I had the Gamma knife procedure 2 weeks ago.  Feeling good and starting Tykerb today...reason is that it gets absorbed into the brain umlike herceptin. My situation is uncommon but I wanted to share ladies.

We can't ever take our boxing gloves off!  Marilyn

Mommytofour, it is stories like yours that make me angry because I feel that your stage 4 status could have been avoided with chemo and herceptin.

 Please keep coming on here and telling your story to the women that are fooling themselves that they are OK because they are only DCIS (high grade) or Her2+ small stage 1 tumors and justify skipping the chemo and herceptin  because of fear of side effects or losing their hair.

{{{Hugs}}}

Mary Jo