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

Hi dancetrancer. You are most welcome. There are lots of issues with validity in many of the studies as there are such small numbers of women diagnosed with < 1cm her2+ breast ca. I always look carefully at the nos of women and the length of the follow up. The retrospective study that I included in my first post is quite longitudinal and you will notice that after a few years the her2+ women's recurrence rate did flatline. Getting through those first years without recurrence is critical for us her2+'s. You are doing very careful research and whatever your decision is, it must be yours alone so that you are at peace with it. Kindest wishes.

I'm sorry you have all the confusion on the right treatment.  Iam from Alabama and have tx at UAB also.  Ihave ER+  PR+  Her2+  IDC and ILC.  I am now taking Herceptin.  Only two infusions so far.

I would like to talk to you sometime.

Beverly

hi there

just a quick note  i have read 2 or 3 cases twhere tiny tumors  - less than 5mm with no chemo or herceptin that progressed

not to scare you but they are very aggressive tumors so maybe get another opinion

AA, I believe you are confusing tumor size (the "T" in TNM staging) with Stage. Stage I was changed; tumor sizing didn't change. T1a tumors are 5mm or smaller, T1b tumors are >5mm to 1cm, T1c tumors are >1cm to 2cm.  That hasn't changed.

This is the same confusion that we had in the other HER2+ small tumor thread.  Here's what I wrote there:

There is confusion between tumor sizes T1a, T1b and T1c and staging.

• When discussing invasive cancer, the tumor size is only one element in the staging and in fact a T1 tumor (whether "a", "b", or "c") can be any stage except Stage 0. For example a T1a tumor, which is a tumor that is 5mm or less in size, can be Stage IA up to Stage IV. What determines the rest of the staging is the nodal status and the presence of mets.
• About 18 months ago Stage I was divided into Stage IA and Stage IB. The difference between Stage IA and IB is not the tumor size - any T1 tumor can be either Stage IA or Stage IB (or Stage II, etc.). The difference is that Stage IB includes micromets. Until January 2010 (the changes were made mid-year in 2010 but were backdated to the start of 2010), micromets was considered the same as macromets and automatically moved the patient to Stage II. However a review of research showed that the presence of micromets (a nodal involvement of >0.2 mm and/or >200 cells but none >2.0 mm) had only a 1% impact on mortality and as such, the decision was made to move those with micromets from Stage IIA into a newly created Stage IB.

So there is no impact to the research studies that are looking at T1a and T1b tumors.

Just wanted to provide clarification for others who are reading this.  

Dancetrancer, one factor that was material to my decision was that it was evident to me on the face of the report that the pathologist did not like what he saw AT ALL. I have no way of knowing whether my two page report was typical in presentation but I do know it was liberally sprinkled with terms like "unfavorable outcome" -- got to love the euphemisms, right?



By happenstance, I met with the pathologist who did my biopsy report (concluded DCIS, but that is another story). He showed me many slides of different stages, grades and characteristics, so when I read the final report, I had a visual to go along with the words. Being able picture the cancer cells bursting through and the proliferation patterns made the cancer real in a way nothing else has. That was going on in my every own body - how DARE it!!!



Time permitting, consider meeting with or at least talking to the pathologist. I'm convinced each cancer has a distinct personality that is not necessarily reflected in the report. I believe there is an intuitive element to medicine that is lost when the patient and doctor don't interact.



I know you are in a tough spot. There is a certain amount of relief when a decision is made at which point, as one very wise poster said to me, your ONLY job is to show up. You don't have to be cheerful, brave or noble - tired, irritable, constipated and pissed off are just fine.

Hi Dancetrancer,

You are in my neck of the woods. I go to Emory...are you seeing O'Regan or Zelnak? I believe I was told her2 gets chemo...period, prior to my pathology results.

I am not a chemo fan....those stats suck given what it does to our bodies. BUT, her2 is scary scary stuff. I wish we understood it more. 

Did they send the stuff to pathology or do any node biopsy? I was told if the bc gets in the nodes,then it gets on the freeway(that being your lymph gland system which runs and cleans blood/tissue all over your body) so to speak and the patient should do chemo; But if the nodes are not positive then the bc car(the invasive cells) never got on the freeway to leave town(which is the breast) so you dont need chemo. Are the drs gonna explain it all to you? As far as I understand the HER is a protein on the bc that makes it aggressive which if it is taken out and not invasive or spreading then the drs may feel the chemo would do you more harm than good. They have to weigh the benefits vs risk and then consult their legal division to avoid lawsuits so I am sure they all have adopted a policy. In our area,most surgeons  belong to the area's surgeon organization and generally follow a certain protocol for "standard of care".

Dancetrancer - interesting the mitosis is only 1 - that could be a factor in making a decision. If you had 4 path reviews, I wonder if that is accurate. Mine was 3 - it is the rate the cells divide.

I scored the highest in each one. Still, it is something for you to ask the oncologists about.

dancetrainer,

The issue of proliferation is an important one. My tumor (5x5x8mm) was also grade 2 with exactly the same make up as yours- ie mitotic count of 1. I had one oncologist tell me that the her2+ trumps this and another say that although it is her2+ it is not dividing rapidly so chemo would not have been of great assistance. I did not have chemo or herceptin. I am 7.5 years out with no recurrence so I tend to agree with the latter onc. I did have rads and 2 years of tamoxifen + 1 year of arimidex for a weakly er+ tumor. I would definitely ask your onc about the benefit of chemo with a mitotic score of 1.

Hopefully I can answer all that you asked. First of all, my Oncotype number -- are you sitting down? -- 75! We ran it while waiting for the FISH results otherwise being Her2+ we wouldn't have bothered. Even though I was something like 70% ER+, it was only at a +1 intensity or only weakly so. The Oncotype test looks at the effectiveness of Tamoxifen and because my cells were weakly responsive to estrogen, for their purposes I actually slid down into the ER- range. My MO was shocked and even pointed out that only 10 years ago I wouldn't have been offered chemo at all due to my tumor size and there I was reading that without any chemo, I would have a 34% recurrence rate on a 4 mm tumor that had been sitting like a cherry on a grade 3 DCIS.



Dana Farber's Dr. Winer (as I was told) had just completed a three year recruitment (in Oct 2010) for a study on stage 1 her2 positives where they received taxol and herceptin once a week for 12 weeks. Taxol, unlike Taxotere, must be given weekly because it has a shorter half life. At the end of 12 weeks, I was switched, as per the study (which I was not part of) to Herceptin every 3 weeks for 9 more months.



Taxol was not horrible for me. I listened to my nurse about drinking a gallon of fluids per day. I took anti nausea pills and never once had nausea. My hair starting falling out on day 15 though I kept my eyelashes and brows til 3 weeks after taxol ended. My nurse was most worried about neuropathy but almost a year later and I seem fine. I had treatments on Fridays and could've gone to an office job on most Mondays but had lost my job a few months before the diagnosis so I was home anyway.



Herceptin was easier although I did get pretty tired near the end. It stays in your system a long time and so really builds up by the end. It is not chemo per se, so my hair grew in just fine while on it. I felt bloated a lot and had a mild runny nose all year. My fingernails still are dry and splitting but I don't know if that is the Herceptin or Tamoxifen.



For small tumors, my hospital generally does surgery first, then chemo, then start tamoxifen while you recover, and then radiation about 3 to 4 weeks after chemo. I've been told there is something about taxanes that you have to wait at least 3 weeks to start radiation because you'll burn more easily. I did not badly at all and I am naturally pale, pale pale.



And yes Herceptin continued during radiation. Tamoxifen made for some wonderful soaking hot flashes during the weeks of radiation when you are told to keep dry. I know many places delay tamoxifen until after radiation, mine does not. My RO also told me he was very concerned about radiating my under arm and upper chest lymph nodes because of the Her2+. He thinks herceptin is great but from a radiation standpoint, cannot trust it to do its job alone. I see you went for BMX while I had a lumpectomy so I find it interesting you'll have radiation but possibly no chemo or Herceptin? A lot of dcis and stage 1 people that do a BMX avoid radiation.

It seems that all the less than 1 cm node negative studies have fairly small HER2+ populations (100 or less) and some of them have relatively short follow-up. As little as 2 years in one case. The Beth Israel study that whippetlover posted showed charts 10 years out but its median follow-up was 3.5 years. With varying follow-up times and very small samples in a population expected to have lower events, there is a lot of statistical variation.

The Research to Treatment video was very interesting. 

Dr. Martine Piccart-Gebhart made a comment that I'd like to point out on the 0.5 cm case they discussed. She said that another pathologist might look at the tissue and say it was 0.6 cm. As an engineer, when I'm given a number, the first question is about how it was measured? What is the accuracy. We get these numbers from path reports and are making a treatment decision based on a fairly small measurement difference. Look at a cm and the mm divisions of it on a ruler. To make the measurement, the pathologist has to decide where the cells went from DCIS inside the duct to IDC outside the duct and where they go from cancer cells to normal cells. The pathologist isn't measuring a tidy ball, it may be irregular as cancer growth often is. 

I think that measurement uncertainty producing a fairly arbitrary boundary between T1a and T1b tumors could be one reason that some of the studies don't see a significant difference (or even much of a non-statistically significant difference) between T1a and T1b recurrence.

Good point bluedasher as my tumour was elongated - stated as 11mm but was actually 11 x 6 x 7. My DH loves maths so he calculated how big a circle that would be and it was only 5mm in diameter. The surgeon said they go with the largest measurement.