< 5 mm HER2+ IDC...why NOT chemo???
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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?
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Dancer- I am 32, dx at 30 Dcis did BMX and found a 2mm invasive triple positive my onc told me straight away to do herceptin and chemo sent me for a second opinion where I was told no chemo. Back to my first onc and after tons of my own research I choose taxol weeklyx12 and herceptin for the year I finished last fall with herceptin and am over a year out from chemo, I worked throughout the chemo took off one day a week for treatment for the 12 weeks I had the choice btw taxatere and carbo and herceptin but was very concerned about fertility. I have a son already who was 6 months when I was dx but always dreamed of a larger family. So that was my agreement with my onc to have the benefit of chemo with the herceptin but not as toxic as other chemos I took glutimine and b6 throughout and did not get neuropathy I went one week with out it and my fingers got tingly went back on the vitamins and had not problems I also used the penguin cold caps and lost all body hair and did not loose ANY significant hair on my head. I was torn if it was overkill with chemo but really worked with my. Onc and determined the best protocol for me. Next month I have my oncs blessing to start trying for baby number two after about 8 months from last chemo my period returned to normal have had 6 regular ones now and hoping we will be blessed with another baby life does and will continue after Brest cancer! I know these decisions are hard we are not the norm and many oncs don't know what to do and the research just is t there yet but just follow your gut! Take care!
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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."
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Maja thanks for your input. What do you think after what I just posted about the mammaprint? And yes, it is mindblowing how different the opinions are. Like at two opposite extremes of the spectrum. That is just CRAZY and completely shows how controversial this is.
jpmercy, thanks for the details on your story. So glad to hear how well the vitamins worked for you - if I do chemo, I will definitely be looking into those vitamins!!!!!!!!! And wishing you much good luck trying for baby number two!!!
Oh, and I survived my first rads treatment today. Only 27 more to go.
I've learned I suck at the breath holding technique. You'd think I'd be good at it, since I know what diaphragmatic breathing is and have had to teach others how to do it. Completely different when you are the patient and are nervous as all get out! LOL! Oh well, unfortunately I have many more sessions in which to practice... -
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+++. -
LOL fluff queen! He really does sound awesome!!! I think I have read that about the double negative, too, in one of those many studies. Oh, and my doc was a bit nervous when I brought out the tape recorder for our session - ha, ha, ha!
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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. -
One possibility in regard to the risk for HR negatives and HER2 positives is that both are generally aggressive cancers, and 1/3 of HER2 positives have high levels of AIB1 and most HR negatives have a high level of AIB1. Those with a high level of AIB1 are prone to develop or have tamoxifen resistance. The roughly 50% of HER2 positives for whom trastuzumab "works" have some protection, although a percentage of the 50% benefitting from trastuzumab do have treatment failure as time goes by. Those who are HR+ can use hormonal treatment as additional protection, whereas HR-'s usually don't benefit from hormonal treatment.
If they could develop a way to reduce the AIB1 level for both groups, that might be helpful.
I don't know of a way to be tested for one's AIB1 level.
I understand that Mammaprints are only done on fresh tumor tissue, not preserved tumor tissue.
A.A.
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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. -
Eve, staging and tumor size is often confused; what they are referring to in the quote you mention is the tumor size T1a, not the Stage IA. A T1a tumor is larger than 1mm but no larger than 5mm in size. Your tumor, considering only the size found during the mastectomy, is a T1c tumor. All T1 tumors - T1a, T1b (greater than 5mm but not larger than 1cm) and T1c (greater than 1cm but not greater than 2cm) can be Stage IA.
dancetrancer, the information that you are digging up is really interesting!
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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:
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).
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Beesie - thanks for the confirmation! And glad you are liking the studies...I was really intrigued, too! It's the first I've read anything about trying to determine a difference between aggressiveness of HER2+ tumors based upon their biology alone...
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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.
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No fluff, I mean BETWEEN HER2+ tumors. Some can be more aggressive than others, and mammaprint (according to that one study - not saying I've studied it in detail) can apparently distinguish between a low risk vs high risk HER2+ tumor by doing a gene analysis of the HER2+ tumor. I guess what I'm hoping is maybe it could tell someone like me, who could really use some more data, just how aggressive my little tumor is. It could help sway me either way in my decision for treatment, if this whole thing is even valid.
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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.
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That would help. I wonder how soon that option for Mammaprint would be available. It is impossible to say just what treatments over time result in changes to one's original type of bc preserved in paraffin -- (chemotherapy, radiation, hormonal treatment, and our own natural aging process).
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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.
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Eve - did you ever find out if they included the material removed at biopsy in your total reported size?
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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.
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dancetrancer - if you do have testing done by Agendia make sure it is covered by your insurance before the testing is done. I had Mammaprint done on a portion of my biopsy sample at the request of my oncological breast surgeon. My insurance company denied the claim (and I got a $5,000 bill!!!) because my insurance company considers Mammaprint experimental even though it is FDA approved. Because my BS asked for the testing, and I did not sign anything saying I would be responsible for the billing, I did not have to pay Agendia out of pocket other than some minor fees - just an FYI.
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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.
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SpecialK...wow...thank you for the huge heads up!!!!! I will investigate fully before even contemplating discussing this with the MO.
Evebarry - yes, from my reading, any HER2+ tumor > = 6 mm is strongly advised to go the chemo/Herceptin route. So there shouldn't be any question at all that treatment is indicated in your case. It's only those of us < 6 mm who have a huge question mark regarding need for further treatment or not.
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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
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Maja, I question if I have enough tumor even for one test, too. I am also concerned about the mammaprint cost - looked at their site - doesn't look like they do any precert with a guarantee of not owing anything except your normal "pt responsibility" if it is denied. I will have to call them to get details.
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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. -
Fluffqueen, I looked at the specifications here and didn't see anything special it was supposed to be treated with (looks like they just take formalin-fixed, paraffin-embedded tissue block - which I think is standard?)...but I'm not sure...anyone else know?
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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.
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Thanks Special K. I'm leaning towards not even asking about the mammaprint, given all that I am learning. It just doesn't sound like it is used much here, and, also if they are just now starting to test on tissue blocks instead of fresh tissue, I question the credibility/reliability of that form of testing further. Hopefully this test will become more refined as time goes on and will be of more benefit to future patients.
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dancertrancer.....
bco had an article on mammaprint that mentioned deciding ahead of time. http://www.breastcancer.org/symptoms/testing/types/mammaprint.jsp
Don't know if that is the same thing they usually do as standard practice or not -
Thanks fluffqueen!
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