When do most recurrences for HER2 happen
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Hi ladies - I"ve just found this thread also and have wondered many times when triple positives will recure, if they do. I am also highly triple positive...100% estrogen, 50% progesterone, and HER2+++, and will be checking this thread often! Question...I wonder how many triple positive ladies have had BLM?
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Good: Thanks for posting! 6 years out is great! I try to be like you - do whatever I can to prevent recurence, but live for today.
3jaysmom - I completely agree with the others - cannot understand why you would NOT be on Herceptin. Hope you got some answers today.
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Hi jsw19! Dang, you are so young. Pitiful disease! My mom was diagnosed with DCIS when she was about 53... I was diagnosed at 41.. also BRCA neg! I started taking tamoxifen in November, and it has been fine. My onc said that younger ladies generally have fewer SE... and after what chemo did to me; I think the SE from tamox are mild!! (I was almost afraid to take it from all the bad publicity it gets!!).
Good advise, good!
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IsThisForReal I had a BMX but not because I was triple positive. My other breast show several suspicious areas in the MRI that didn't show up in the mammo/US. I would have to have those areas biopsied every year… ends up one of those areas was a small amount of LCIS. It was the correct choice to do the BMX for me.0
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I am so glad to have found this thread! I didn't realize being triple positive was rare! I was thinking that it was common!
I am scared for my future. I was Her2+++, and I know from attending a lecture a couple of weeks ago that the more positive you are, the better Herceptin works. I felt really good about getting that information, but as you can see below, I have a total of 14 nodes positive! I was told that my chances of reoccurance is 30% in 10 years, but I told my oncologist that I have a 70% chance that it won't. It is so hard to stay positive all of the time. No punt intended!!
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I have heard all sorts of things. Being HER2+++ (me to BTW) can be better but I have read somewhere that says just the opposite… and the onc fellow said it doesn't matter (not that he knows since he is an onc in training
)What exaclty have you heard?
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Actually, I don't think being triple positive is rare. In the BCIRG 006 study, 54% were hormone positive. On the taxotere, carboplatin and herceptin thread, it has always seemed to be quite an even mix. Hormone negative is more common in HER2+ tumors than it is in HER2- tumors; i.e. about 3/4 of HER2- are hormone postitive and about 1/2 of HER2+ are hormone positive. I think that statements related to that are sometime misunderstood so that people think that triple positive is uncommon.
I've also seen reports of a study that found that chemo/Herceptin tends to make the cancer more hormone positive (I guess based on cases where neo-adjuvant chemo didn't completely eliminate the cancer?).
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I wanted to address an earlier post about triple positive being still susceptible to late recurrences due to the ER + piece of the dx. I have confirmed with 3 Oncologists the 3rd today at my appointment that this is not par for the course for Her2 positive ladies with Highly aggressive grade 3 tumors. It is still believed and there are studies out there I have seen them here and My Local Onc provided one for me at dx that show that high grade tumors and aggressive Her2 tumors are most likely to recur in the first 3 years. (there are some 5 years out there) but the curve go's mainly horizontal after 3-5 years for highly aggressive grade 3 Her2 tumors. (and non her2 for that matter)
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On when recurrences are most likely, I've gone by the DFS (disease free survival) graphs in the BCIRG 006 3rd interim analysis. I figure that older common knowledge doesn't take into account the use of Herceptin and a change in treatment is likely to change when recurrences happen.
The BCIRG 006 3rd interim analysis is also interesting because BCIRG included node negative women (about 1/3 of the participants) and the 3rd interim analysis has DFS charts for node negative, the node positive, and greater than 3 lymph nodes positive (also about 1/3 of the participants). As most chemo studies do, the timeline is based on time since the start of chemo.
The slope of the curve on the DFS chart is approximately the rate at which recurrences are happening (in theory some events could be non-treatment, non-cancer related deaths that also remove someone from disease free survival, but I expect that these are rare and don't affect the chart much).
For AC-T treatment (no Herceptin) on the node negative chart, the curve stays flat for about 12 months and then has its steepest drop up to 24 months where the slope gets shallower. This supports the pre-Herceptin impression that recurrence is most likely in the first 2 years. For the AC-TH and TCH treatments, the curves stay pretty flat until 24 months, then they have their steepest drop up to a bit before the 36 month mark but the steepest part of the curve is not nearly as steep as for AC-T. After that, they drop more slowly.
The node positive chart is similar except the higher rate of recurrence starts a bit earlier - eyeballing it looks like around 8 months without Herceptin and around 16 months with. For the greater than or equal to 4 node chart, the steep part starts a bit earlier and the slows down later (maybe at around 40 months).
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bluedasher - I think the triple positive is considered 'rare' in the spectrum of all types of breast cancer since only what about 15-25% of all breast cancers are HER2+ and then a subset of those are positive for both estrogen and progest receptors. BCIRG006 selected for HER2+ so it is not a population based sample as I understand it.0
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bluedasher - Do you have any idea why they never published the BCIRG006 results?0
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Omaz
Regarding rarity - I guess it depends on the definition of rare or uncommon. HER2 is about 20-25% from the estimates I've seen and HER2+ hormone+ is about half of that so 10%-13%. I'd call rare something around 1 or 2%. But also, some have felt that they are unusual in the population of HER2+ because they are hormone postive and that definately isn't the case. HER2+ hormone postive and HER2+ hormone negative tend to occur at about the same percentage and if anything, the HER2+ hormone positive group usually is slightly larger in the studies that I've seen - even though in some cases being hormone negative was counted as an extra risk factor that could qualify someone for the study.
Amongst HER2+ cases, hormone+ aren't rare or uncommon by any definition from what I've seen.
On BCIRG 006 - I'm puzzled by that too. I thought that it was expected that they would publish in 2009. It could be academic/political since there seems to be a good amount of debate about the conclusion that folks like Slamon want to draw from it that TCH should replace AC-TH. Maybe they are having trouble in peer review and trying to get a few more years of follow-up. BCIRG 006 isn't the only case where publication is happening very slowly. I haven't seen anything released on the HERA 2 year Herceptin vs 1 year Herceptin tracks and it has been a long time. For a while, I have assumed that that was because they weren't seeing any significant difference between the two groups and were waiting for more time to see if a difference would emerge. However, it has been so long now that I would think it is time to say even if the result is no difference.
There seems to be a rush to come out with results (sometimes in slideware rather than full-blown articles) when they results dictate a change in current treatment (e.g. Herceptin should be added to chemo from the inital studies, TCH is a comparable alternative to AC-T, Stage 1a and 1b HER2+ have higher recurrence than was perviously thought without chemo/H so they should get it) and a lag once the treatment is already established.
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Hi Ladies, I have not posted in so long, but lurk a bit. I had microinvasive her2 breast cancer, was told less than 10 cells as the invasive component.I have never understood pathology of 3.7 her2...some acted as though that is very high...does that mean 3+++, I really do not know. ! 11/2 years out from diagnosis and I feel that breast cancer has totally robbed me of my piece of mind...I was not offered any treatment, did have double mast...do not regret for a minute..just curious if anyone can answer, I follow Lago and others a lot..I find comfort here. xo
Laura
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Bluedasher - Ok, I agree. Minority maybe?
It is good that we do have so many treatments. I am curious to see what Phersephone (sp?) and Phare and a couple of the others looking at 6 months of herceptin come up with. I have wondered about the 2 year herceptin arm too. In BCIRG006 at the 3rd analysis it looked like ACTH had a bit of an advantage over TCH even though it wasn't statistically significant (node negative), what did you think of that? 0 -
Oh my I have groupies 0
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No, no groupie here, just kind of marvel at what women deal with head on, something that "lay" people so to speak do not get.
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thanks, ladies..i have seen 3 oncos' so far. 1st one fired me, after i ended up in icu from the 1st neulasta shot.. didn't understand its' DEADLY with MS.. told me i couldn't have sicle cell; so what WAS my problem?? ah, i couldn't breath, they like, had to keep the refrib on the bus that took me to the hosp.. then, i finally found one who would treat me, for chemo. they titrated it as low as possible, and still have it work. next, i ended up in the funny farm from the ALs was scared to death when i stopped them, but amdoing naturelles, and praying alot. so far, 3 tests, NED.. so, after i finiash the upcoming PET if it comes out ok NED again... fingers crossed, knees bending... I'll pull out my old reports, ask for new ones, and re discuss herceptin.. i think they're worried about my heart. have had numerous strokes, near misses with my heart.. so, we'll see what shee says..thanks for all the info. knowledge is power.. 3jays0
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Omaz - Yes, the TCH recurrence rates are slightly higher than the AC-TH ones, but the difference isn't statistically significant.
On the other hand, AC-TH had about 0.5% of patients who developed acute Leukemia and about 1.5% more who had Grade 3 or 4 CHF. So if the recurrence chance is perhaps a tiny bit less with AC-TH, I think that is counter balanced by the slight risk of Leukemia and the higher risk of heart damage that comes with AC-TH. AC-TH also had around 20% pf the patients who had sustained LVEF loss greater than 10% compared to about 10% of the TCH patients.
What does "not statistically significant" mean? Well, even there is no cause for a difference, random variation can cause two arms of a test to have slightly different results. For example, if one looks at the tumor characteristics for the 3 arms, 22% in the ACT arm had 4-10 nodes positive, 24% in AC-TH and 23% in TCH. People were randomly assigned to treatment arms so there is no way that the treatment is causing that difference - it is just random variation. Just like if you roll a die 60 times, you won't always get a one on 10 rolls - you might get it on 9 or 13 roles. On the other hand, if you get a 1 on 32 roles, it probably isn't a fair die. There is a mathematical test to see if a difference is large enough that it is unlikely to be caused by just random variation. If it is, the difference is statistically significant.
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blue - Not statistically significant just means to me that they tested for a difference in recurr between the two treatments, ACTH and TCH and though there was a numerical difference it wasn't significant, meaning it was just due to random variation or chance.0
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Yes I too have read some studies and the difference between AC-TH and THC was like 2-3%.
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Hi Lago, actually on second thought, could you spare an autographed picture of yourself.......?
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Laura, picture with hair, without, wig or scarf 0
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Yours is one of the first blogs i have read saying that you had Chemo first, then surgery. I am in the process of doing the chemo first (have 1 more to go) Very sick from the taxotere, carboplatin and herceptin...given all in one day, but if this is the way to go I will endure! Like to know some statistics of survival going this route. I am triple positive and every time I have major pains I only think of the worse, like if I didnt know it was in my breast where else is it
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Omaz - I am so hoping the 6 month studies come out very favorable, as that is what I had for herceptin due to heart issues.
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blondie - The 9 weeks of herceptin results from FinHer were very promising, it was just a smallish sample size!0
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Good -- I have not heard of a test to check HER2 level. Can you tell us more about that please? I have tumor markers checked, but onc. has never mentioned testing HER2 level. Thanks. Congrats on 6 years out.
Anyone else know of such a test?
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FISH test is one that tests HER2 status
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Carolina59 do you have a copy of you path report. This is where that information should be listed. If you don't you should get one. Yes you have a right to have a copy.0
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If you get to FISH with HER2... you were weak because original pathology had you unequivocal (in between positive and negative).
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Leanna - Do you think that's always the case? It was very curious when I had my biopsy, there was delay in getting the HER2 results. It came back HER2+ by FISH I never saw the immunohisto staining result if it was done ( the ++ score). I have wondered about that.0
