What are the milestones for HER2 Gals?

Someone will be along with the research links I'm sure. Our posts will bump the topic. I learned it from ladies on this board, and I feel they are truly on the leading edge of research updates.

That worked if I cut and pasted it. I believe that's where I got my info from last year! If you read the whole first page it has a good amount of into in it, but that first post with the article in it had the most info. I do not take any AIs or Tamoxifen so I am a sitting duck. Wish me luck!

I couldn't bring up one of the links and the one Beach added was too technical for me this early in the morning.  However, I am confused by Barbi's post.  How can her risk increase after 5 years if she is ER+ and PR+ and can take Arimidex or Tamoxifen according to if she is pre or post-meno?  If this is so, maybe that is why my Onc is keeping me on Arimidex for a second 5 years.  I am Her2 neu+ so maybe it is different for people like myself. I will discuss this with my Onc next visit.  I think our doctors hate that we get on these discussion groups because it means they have to answer a lot of questions they don't really want to bother with.  Tough!  We have a right to know where we stand with this bc and why we are taking meds which make our life miserable to survive.  Thanks ladies for the input.

Medigal, I'm sure I've mentioned on this thread that I was given no hormonal, AI's...nothing. So I don't have that to help me. You'll also note that doctors are giving the AIs for 10 years instead of just the 5.

The last article Beesie posted states:

Women who had low-grade, or less aggressive, tumors, actually had a higher risk of late recurrence than women who had higher grade tumors, Brewster said. "That was certainly a finding that we were surprised to see," she said.

AnneMarie, your hormone status, ER-, PR-, HER2+, seems to be the most rare of the combinations so it's hard to find much data on it.  I did find the following report which compares recurrence and survival rates based on hormone status.  The mean follow-up time for this study was just under 5 years, so it doesn't help much in answering the long term question (but more on that to come).  What this study did show is that when we are talking about early recurrence (i.e. within the first 5 years), ER/PR+/HER2- has the lowest recurrence rates and the highest survival rates whereas triple negative has the least favorable results.  Specific to your hormone status, it states that "...the ER/PR-,HER2+ point estimates were more similar to the triple negative values". http://www.clinmedres.org/cgi/content/full/7/1-2/4

The following article talks specifically about triple negatives, which isn't your situation but is the hormone status to which yours appears to be closest (as least according to the previous study).  "In patients with triple-negative breast cancer, the risk of any recurrence rose sharply from date of diagnosis, peaked 1 to 3 years, and dropped quickly thereafter. Among patients with other cancers, there seemed to be a steady risk of recurrence throughout the entire follow-up period."  This is the chart that accompanied that statement:

http://clincancerres.aacrjournals.org/content/13/15/4429.full

So this would suggest that if your prognosis is similar to triple negative, then your greatest risk years are the first 3 years after diagnosis.

More on that from the following report, which pooled the results of 12 different studies.  This report concludes that "initial differences in survival between subtypes were found to change with increasing survival time, and all previously described poor-outcome subtypes, when compared to ER-positive, HER2-negative tumors, became in fact good outcome subtypes if patients survived longer than five years. The observed survival patterns were independent of any systemic adjuvant therapy, suggesting that tumor biology and molecular heterogeneity within breast cancer subtypes, rather than the choice of therapy, determined the survival trends."  So in other words, while ER/PR+/HER2- breast cancer has a better 5 year recurrence and survival rate than triple negative or HER2+, over time this seems to even out.  http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1000281

From all this, I think the overall conclusion is that women who are triple negative or HER2+ face a greater risk in the first 5 years post-diagnosis than do ER/PR+/HER2- women.  After year 5, the situation switches, with ER/PR+/HER2- women facing a greater risk than triple negative or HER2+ women.  It's appears to be clear the overall risk for triple negative and HER2+ women drops significantly after year 5.  What these studies don't tell us is whether the overall risk for ER/PR+/HER2- women actually is higher in years 5 - 10 than it is in years 1 - 5.  From the chart that I included above, and from everything else that I've read (so far, anyway), that does not appear to be the case.  I believe that their risk still goes down in years 5 - 10 vs. years 1 - 5, but does not drop to nearly the extent that the risk drops for those who are triple negative or HER2+.

Maybe some of that is helpful?

Edited to add:  Barbe, I just saw your post.  The article saying that "Women who had low-grade, or less aggressive, tumors, actually had a higher risk of late recurrence than women who had higher grade tumors" does not mean that the rate of recurrence goes up over time for those with low-grade tumors.  Just as an example, the statement in quotes would be true if the recurrence rate for women with high-grade tumors was 15% in years 1-5 and 4% in years 5-10 while the recurrence rate for women with low-grade tumors was 8% in years 1-5 and 5% in years 5-10. In this example, the risk of recurrence for those with low-grade tumors still drops in the later years. I'm not saying that the risk for those with low-grade tumors goes down in the out years but I haven't found anything (yet, anyway) to say that it is higher.

Beesie, I did understand that the note I quoted didn't say it increased the odds, but it was worth noting the "higher risk" comment. I think part of the problem as someone said on another post, is that most tracking only went for five years, they are now starting to quote longer studies are more of us are either surviving longer, or there's more of us to study!

AnneMarie, I'm a bit of a research junkie so when there is a new question that I don't know the answer to, I enjoy the challenge of digging through all the mounds of data on the internet to try to find those few gems that provide the answer.  I don't know that I fully answered your question, but I think I found some interesting information.

Barbe, I think the reason that a lot of studies only go for 5 years is because it becomes so expensive and so difficult to continue to track people as time goes on.  Other factors start coming into play - people move, people change doctors, people die of illnesses completely unrelated to BC, people simply stop cooperating and responding.  The other problem is that once you get past 5 years, or certainly past 10 years, you often find that whatever it is that was being tracked is no longer considered as relevant as it once was, now that new research and new treatments are available.  So if there are new scientific discoveries or new hypotheses that are more important to research, it puts into question the benefit of continuing to spend money to track women from a study that was started over 5 years before.  Those are all the reasons why we often don't get more than 5 years of tracking.  On the other hand, when we do get more than 5 years of data, sometimes we discover things that are really fascinating and unexpected. The fact that breast cancer diagnoses that are high risk in the first 5 years turn out to be low risk in the later years is a bombshell.  That is so significant and such important information.  See, this is why I find research to be so interesting! 

AnneMarie

My DX and yours are exactly the same. I was DX 1 yr ago on June 1 2009 and my last herceptain tx is this Thursday!!!!!!!! My ONC told me that I had about a 7-10% chance of recurrance rate. That since the discovery of Herceptain that HER2+ was a good DX. Since the tumor was still small and no lymp nodes. I am thinking that 7-10% wasnt that bad of odds and also he told me that the longer you go without recurrance the better your chances are for it not coming back!

I am giving it all to God and having faith in him that he will proctect me and keep me safe!

God Bless!

Sherri

In the first study that Bessie mentions, they looked at results from women diagnosed between 1998 and 2005. Given those dates, a lot of the HER2+ cases would have been before Herceptin use was available or common. Therefore, I question whether the finding that HER2+ hormone negative being similar to triple negative is accurate. 

The data I've been able to find that has been most helpful is the BCIRG 006 study results. The third interim analysis results cover about 5 years of follow-up and they have broken out DFS and overall survival figures for the node negative participants. 

The slide set can be found at:

http://www.bcirg.org/Internet/Studies/In+Breast+Cancer/BCIRG+006.htm 

Slides 19 and 20 are for node negative.

Shadow, in the chemo studies, they usually count from the start of chemo.

AnneMarie - based on the charts for node negative tumors in the BCIRG 006 study, without Herceptin, recurrence is most likely between 1 and 2 years and then less steep (fewer recurrences) between year 2 and 3. After 3 years it is pretty flat (not many recurrences). That matches what your docter said. The lines for the study overall (which are dominated by the node postive cases) also match that.

The lines on the chart with for Node Negative with Herceptin are different from that. Node negative with Herceptin, there were very few recurrences during the first 24 months. The curve is steepest between 2 and 3 years (but still pretty flat compared to the node negative without Herceptin and recurrence in the study overall) and then somewhat flatter after 3 years.

Most of the data doesn't break out the data for node negative recurrence and most of the earlier studies of Herceptin didn't even enroll node negative women.

In BCIRG 006, disease free survival for node negative at 60 months follow-up was 93% with AC-TH, 90% with TCH and 85% with AC-T.

Barbe, your profile doesn't give your stats and I'm not sure I recall them correctly. Did you have DCIS or maybe mircro-invasion? The stats for recurrence without chemo are relatively high for Stage I HER2+ even if the IDC was less than 1 cm. MD Anderson did a retrospective study that they reported at San Antonio in 2008. They looked at patients who had no chemo and not Herceptin with node negative tumors less than 1 cm. They looked at three groups - hormone positive (which only included HER2-), HER2+ (regardless of hormone status) and triple negative.

For 5-year disease free survival, the HER2+ group had 77% (~23% recurrence).  The same statistic was 95% for hormone positive and 83% for triple negative. 5-year distant recurrence was ~14% for rthe HER2+ group. It was 2.5% for hormone postive and 4.5% for triple negative. So not only was recurrence higher, if a recurrence occured for HER2+ it was more likely to be metastatic (i.e. distant). 

The tumor had to be T1a or T1b so those numbers wouldn't apply if it was DCIS and microinvasion.

Looking at the DFS charts on the poster for that study, most of the recurrences for HER2+ occurred between 18 and 48 months. Before 18 months the HER2+ line looks like it is the same as the HER2- line, then it starts dropping down with a rate of recurrence that looks pretty constantant until a bit before the 48 month mark After that, it looks like it goes almost flat again.