Topic: < 5 mm HER2+ IDC...why NOT chemo???

Feb 7, 2012 08:55PM Maja2213 wrote:

Hi dance,

Hey, get the oncotype test either way.  It will help you see how strongly ER+/PR+ you are too.  If you remember I probably didn't need the oncotype test either for my 4 mm tumor because it was Her2+.  Got the test done (besides I had already maxed out my out of pocket insurance cost for the year) and I got that darn 75!  There was no doubt from anyone then that I needed chemo with Herceptin because tamoxifen or an AI is not going to help me alot.

Can you believe that you got such different opinions from two different places?  

Feb 7, 2012 09:01PM dancetrancer wrote:

Sugar77 - I'm glad that you too are finding this information helpful and am very happy to have you here!  Thank you for sharing your SIL's story.  Sounds like a similar dilemma - why wait when you are still investigating?

fluffqueen, how awesome does your doc sound?  I loved hearing about your discussion today.   Wow, that is indeed very cool that he brought up that study...I bet he was impressed that you had already seen it.    Thank you for finding out his opinion on both t1a's and b's.  I love hearing about his thought process.  So, did he say you were low risk based upon tumor size and grade, combined of course, with the fact that you had treatment?  Anything else?   

So, I did a bit more research on the oncotype for HER2+ tumors, and posted on the other thread, but wanted to share here for those who aren't on that thread and may want to post feedback. Check out the study I found. 

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Identification of a low-risk subgroup of HER-2-positive breast cancer by the 70-gene prognosis signature
This study talks about the oncotype and also about the mammaprint (70 gene-signature) gene test. I found the results/discussion fascinating. It think it explains why we've heard so much that a HER2+ test trumps an Oncotest. It also indicates that a mammaprint test may help actually stratify out which HER2 tumors are lower vs higher risk. I'm going to paste the last part of the discussion in full...I'm thinking of asking my doc to what he thinks of running the mammaprint test instead of the oncotype, but I still need to read more before I open my mouth and possibly insert foot (I'm good at doing that and annoying docs!).

"The second widely used prognostic tool is the 21-gene recurrence score (Oncotype DX, Genomic Health Inc., Redwood City, CA, USA; Paik et al, 2004), which is based on real-time RT-PCR and uses formalin-fixed, paraffin-embedded tissue, and is retrospectively validated for ER-positive breast cancer. As the measurement of the expression of the HER-2 gene itself was chosen as important contributing factor in this ‘knowledge-driven approach', most if not all HER-2-positive tumours are classified as intermediate or high risk and therefore, this assay is unlikely to add prognostic information for HER-2-positive disease. Of the 55 HER-2-positive cases identified in the NSABP B-14 trial, 50 had a high recurrence score (RS) and 5 had an intermediate RS, respectively, whereas none of the patients was assigned to a low recurrence score (Paik et al, 2004; S Paik, personal communication). In comparison, the 70-gene signature was developed using the ‘data-driven approach' with unbiased, genome-wide gene expression. The HER-2 gene itself was not on the list of the 70 priority genes selected solely on the basis of differences in gene expression levels from intact RNA of frozen tumours. This study suggests, that a clinically meaningful and larger proportion (22%) of chemotherapy-untreated HER-2-positive tumours are identified as low risk by the 70-gene profile, and these patients experience a favourable long-term outcome. This is especially remarkable, as 13 of 16 ER-positive low-risk patients did not receive endocrine treatment at the time the original studies have been conducted.

Avoiding overtreatment with chemotherapy and/or trastuzumab for truly low-risk HER-2-positive patients is an important goal, taking into account the risk of serious adverse events and the cost of these treatment regimens. Currently, trastuzumab monotherapy in the absence of chemotherapy is not regarded as standard of care for patients with HER-2-positive disease, although many experts at the St. Gallen consensus conference believed that trastuzumab alone may be reasonable for a subset of patients with HER-2-positive disease in the future (Goldhirsch et al, 2007). Our data raises the intriguing hypothesis that this strategy of anti-HER-2 therapy in combination with endocrine therapy might first be tested in patients with highly endocrine-responsive HER-2-positive disease and/or patients with hormonal receptor expression with a ‘good prognosis' 70-gene profile. Recently, Chia et al (2008) reported similar findings, as the HER-2-positive, ER-positive subgroup of T1 cancers had a more favourable outcome with a 10-year BCSS of 92%, as compared with the HER-2-positive, ER-negative subgroup with a 10-year BCSS of only 76%.

In summary, our study suggests the existence of a low-risk HER-2-positive subgroup of patients with favourable outcome, which can be identified by the 70-gene MammaPrint gene signature. The results of this study support the evaluation of less intensive treatment strategies in this low-risk group. Further validation of this important finding is ongoing in the MINDACT trial, whereby patients with HER-2-positive disease deemed to be at a high clinical risk by Adjuvant!Online (Ravdin et al, 2001) with a ‘good prognosis' MammaPrint profile may be randomised to receive no chemotherapy but may be treated with trastuzumab alone at the discretion of the treating physician." 

Feb 7, 2012 09:37PM fluffqueen01 wrote:

dancetrancer-he knew what he was in for from the first interview I did when considering him. Walked in with my 4 pages of questions referencing studies, etc. I think it drove ihim crazy at first. But now he really likes it. He sat down in the chair along with the chemo nurse and the new NP while we talked.

There are lots of criteria that he uses,including the ki-67, percentage positive, etc. In general, he feels that double negative her2+ is the worst. I can't remember all he said why, but mainly it is very agressive. He put my pathology somewhere on the low end literally using all thefactors of the tumor. then asked me if i wanted a copy. there was no was I could decifer all the pencil graphics and illustrations second time.told him i new where it was if i wanted it.

there was no oncotyping for meas he said it was a waste of time for her2+++.

Feb 7, 2012 09:59PM fluffqueen01 wrote:

i taped recorded all three of my interviews wit the ONCS, BS and PS. No one seemed surprised. It most be used more here. There were more surprised with my four pages of questions and the studies I was referencing. Of course all the prep work, that kept me up for hours on end on the computer, reading the good and the bad, creating stress put me into panic disorder. Couldn't eat, blood pressure went up, cried all the time, dropped weight like crazy. My NP best friend made me come see her and put me on Cymbalta. Picked it because it has some pain masking components that she thought would help with chemo. Also put me on the lowest dose of metoprol, a beta blocker bp med She chose that becausethere are some studies about using beta blockers to help protect the heart while on chemo and herceptin. Said my dose probably wasn't enough to make a difference, but it couldn't hurt. I was better in two days.

I consider myself very lucky to have the friends I have who seriously have held my hand through the whle thing,explaining all the medical terms, reviewing protocol etc. She even went to some of my interviews with me.

Feb 7, 2012 10:19PM Hindsfeet wrote:

http://www.oncoconferences.ch/mm/Consensus2011.pdf

The Panel unanimously supported the use of 1 year of
trastuzumab as standard adjuvant treatment for patients with
‘HER2 positive' disease, and the majority were willing to extend
this to patients with pT1b, but not pT1a pN0 disease.
Trastuzumab administered for <1 year [88] was regarded as
suboptimal if 1 year of therapy was feasible, but better than no
trastuzumab if limited resources prevented its full duration us

I found this part interesting in that I am dx with 1a. Therefore according to what is said here...  trasuzumab would not be recommened. This is why I have a difficult with staging. Someone coming here like myself with stage 1a will doubt the need to do herceptin. The biology of the tumor should determine treatment...not staging...as said by some, staging is just one of the factors in looking at the over all picture.

Feb 7, 2012 10:32PM - edited Feb 7, 2012 10:33PM by dancetrancer

Wow fluff, those are GREAT friends.  I feel pretty lucky as well in that department, plus DH is a saint.  I can so relate to the mental stress and how you described it fits me to a T.  I feel better today, but this past week and a half have been utter misery.

 AlaskaAngel, I thought so, too, but check this out:

Coming early 2012, Agendia is able to perform the Symphony^TM cancer assays on formalin-fixed, paraffin-embedded (FFPE) tissue from a paraffin block or unstained slides!  

 Evebarry, if your tumor is 2 cm, you are not a T1A.  You and I are both Stage Ia, but within that, I am a t1a and you are a t1C (someone beat me over the head if I've screwed this up, I've only read the staging think like 3 times now, so hopefully I've got this right).   Oh, and I do agree with you, the biology of the tumor is very important.  There is, however, still controversy for those of us < 6 mm (I am 3 mm).  

Feb 7, 2012 10:38PM fluffqueen01 wrote:

The whole biology of the tumor thing is why my onc thinks anyone who is her+ needs herceptin. He doesn't agree with that part of the paper. He just feels it is too agressive not to give it a "shot of herceptin" as he calls it.

Feb 7, 2012 10:49PM fluffqueen01 wrote:

wow...I will have to read up on that. That would be great to know. I feel like I am not so concerned about a breast recurrence. I think that is a slim shot. I am very worried about mets to distant locations though.

Feb 7, 2012 11:07PM - edited Feb 7, 2012 11:09PM by AlaskaAngel

I feel pretty sure we are each unique in our response to being diagnosed. For whatever reasons -- including bc across my family on both sides that only caused one death back in the 1950's -- I've never once worried about recurrence. But I haven't gotten away from fear just the same, as I am genuinely chemophobic!

A.A.

Feb 8, 2012 12:06AM Hindsfeet wrote:

Beesie...I misunderstood. Thanks for correcting me. I never hear that I'm tlc. When these ladies said they were the tla & b group, I thought I belong here to the group. Iol...I read the article that dancetrancer posted and thought if that was the case I didn't need treatment, but knew better in that the biology tumor is why my oncologist said I needed further treatment...not stage 1a. From what I understand the biology  of my tumor is idc with the her2+ and high grade. 

Susie I spoke with my oncologist about a second opinion on my surgical path report. She said I needed to call the Pathology where my tissue was done and ask them to send it out for a second opinion. I'm having it sent to where I had the biopsy done. Is it possible to talk with the pathologist after it all is said and done to explain it all to me and answer my questions? Hopefully I can fit time in to make the call tomorrow. Since it was all one tumor you would think they would consider both biopies in making a dx.

Feb 8, 2012 12:25AM suzieq60 wrote:

Eve - wouldn't a simple question to the lab who did the tests after your mastectomy suffice? Can't your doctor ask if they included the previous biopsy tissue in their total size? Were they given the details of the inital biopsy? That would save you money on getting another opinion.

Feb 8, 2012 09:14AM Maja2213 wrote:

Dance -

I think the mmmaprint info is great.  The more info the better before taking drugs that could do permanent damage.  Too bad the cost is such an issue.

I wouldn't be able to do it anyway.  My onc told me that my tumor was so small that there is nothing left for them to test. I know the oncotype test center returns the tissue but it can't be reused for another test.  Of course I've already done taxol and herceptin so it's not like I could undo it.

Good luck

Feb 8, 2012 01:01PM fluffqueen01 wrote:

When I read the info on their site, it did appear that you have to plan it before surgery as they treat the tumor with something to keep it usable. In my case, I couldn't have one done as it has been too long. Bummer for me.

Eve...with my first biopsy, I actually called the pathologist directly without telling anyone He said it was the first time anyone had done that. He was very nice.

With my second biopsy, when it came back her2+++ , the BS automatically sent out for a second read. If I had wanted, I could have requested the place to send it. You can do some research, cant remember if it is on this site or others, but there is some guy at Vanderbilt, I think that everyone thinks is a genius. I also looked at the Top Docs list for pathologists. In my case, the folks that read them were on the list so I decided that with two agreeing reports, they were probably right.

Feb 8, 2012 03:07PM SpecialK wrote:

This is from Susan Love's site:

As we learn more about breast cancer, we are also learning how to tailor treatments to the type of tumor a woman has. MammaPrint is a genetic test that may help some women make treatment choices. I say "may" because the test has not been widely used, and because it is far from perfect. MammaPrint does not and cannot precisely predict whether a woman will have a recurrence. It can only assess whether a woman is high risk or low risk-and even then, there are problems. According to the data submitted by Agendia to the FDA, MammaPrint accurately predicted which women were at low risk for having their cancer spread about 95percent of the time-which is pretty good. But it only accurately predicted which women were at high risk for distant recurrence 23 percent of the time. This means that 77 percent of the time it was wrong-which is clearly not good.

I went back and looked at my Mammaprint results last night because I was curious. I don't know if they have changed their process since 2007, and I couldn't find any info on it.  I was considered a "high risk", but other than confirming ER/PR/HER2, I found little else of value in the test.  There was no tailoring my treatment in accordance with anything on the test results - I got TCH like many other triple positives.  After I got the bill from Agendia I did call their customer service line and request an "AOB" form, it is an "assignment of benefits" form.  I filled it out and faxed it back.  It says that they will accept insurance payment as full payment - so whatever insurance paid was good enough.  Unfortuately insurance did not pay - I paid some minor fees and they probably wrote off the cost.  My MO explained that the cost of the testing itself is probably several hundred dollars but they own the intellectual property (patent) so they charge out the wazoo.

Feb 9, 2012 12:11AM fluffqueen01 wrote:

dancertrancer.....
bco had an article on mammaprint that mentioned deciding ahead of time. www.breastcancer.org/symptoms/...

Don't know if that is the same thing they usually do as standard practice or not