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

Thank you all SOOOOOOO, so much.  I've got a call into my local onc to see what I need to do to get started.  Hopefully he'll be on board with the TCH (he's the one who offered to to Herceptin only).  I re-listened to my tape from MD Anderson and have convinced myself (at least at this moment, LOL), that this is what I need to do.  I joined the TCH thread for some hand holding as I'm definitely gonna need it.  Pretty d*mn scared!  

I have taken notes from my appt and will soon post some additional interesting details for you all.  Gosh I'm so glad I taped it!!!!  It really, really helped listening to it again, reading all of your posts, and talking to a friend who has been through TCH this morning.  One step at a time.   

Here are some points made by my MD Anderson onc.  Hopefully this will help those who have the same questions in the future that I had.  These are my notes from our appt - my summary, so it's not all verbatim, but some of it is.  We discussed the study and the 23% recurrence (combined) and 15% distant/metastatic recurrence risk.  She said these recurrence numbers are not acceptable from an oncology standpoint.  Then she went on:

We go back to, well, it's a 3 mm tumor, so how small do we treat these things? We say, it seems like biology trumps size. If you had a one cm tumor or positive lymph nodes, we would not be having this big conversation. You get treatment. However, there are no randomized clinical trials, b/c in general the risk is low, and only about 10% of patients with a tumor your size are HER2+.

What we do is have a discussion with patients about what the risk is, especially young patients. We published a second paper, looking at this risk for patients that were different ages. It showed that the younger you are, the higher your chances of having a recurrence. So, I'm a little bit more aggressive and pushy to patients like you to receive therapy.

Since we don't have any data about doing Herceptin alone with patients like you, the answer is you have to have it with chemo, b/c of the huge synergy when we give it in combination. 2 good regimens -anthracycline f/b taxol or TCH. In patients that have low risk tumors that are not really low risk (b/c you don't have any positive lymph nodes yet are HER2+), TCH seems to be a better regimen. Less heart risk damage than with anthracyclines. RE: Taxol X 12 with Herceptin trial at Dana Farber: we don't have any results from that trial yet. It's hard to say. If you were 60 years old, I would kind of say "ok, well, let's use that", b/c of heart risk..and TCH is no breeze to go through. It may be that Herceptin is the main component of the treatment, but we just don't know. Monotherapy metastatic: that's a good question - response rate - almost double the herceptin/chemo response vs monotherapy. A couple of weeks ago, I was talking to Chuck Vogel who did the monotherapy studies - would he do it with adjuvant patients like me/my case - he said "no. I think the synergy with the chemotherapy is important, and since we are not aiming to palliate, we are aiming to cure, we need to give these patients the best chance."

My doc: "I would not say you have to do this, but I would I would strongly recommend for you to consider to receive adjuvant systemic therapy. And I would do it would 6 cycles of TCH followed by continued Herceptin."

Regarding 4 cycles vs 6: There's no data. There's absolutely no clinical trials or data of TC (taxotere and cytoxan)with Herceptin, so this is "creative oncology" and we don't like to do that. (not sure why she said cytoxan, since she recommends carbo for me, but this is what was said)

Now what has happened with some of my patients is after 3 or 4 cycles of TCH, they've just had it. They just can't finish it b/c of toxicity. If that is the case, you can always stop the chemo and just continue with Herceptin. But at least give it a try. Now you are not a person I am going to put a gun to your head and say you have to finish these 6 cycles of chemo, but if you can do it, do it.

With my mitotic score a 1, should I not have chemo, since it will be less likely to respond?: you only have a 3 mm to look at, so we kinda have to look at the pathology with a grain of salt. The driver for this tumor is HER2 and that's one of the highest proliferation things that can happen. When we look at multivariable analysis and look at the grade of the tumor, yeah, grade is important, but HER2 seems to be more important than grade. 

What do you say to other docs who have told me, no you are t1a, under 5 mm, no chemo needed: Yes, it is retrospective data, except for a few clinical trials letting patients with your size tumor in now, there will not be any other data to look at - and that date from the new trials will not be out for a few years and it won't help you...but I will tell you I was reading a paper from France this weekend. They have socialized medicine - docs practice in a very homogeneous way, if you will. Letter from guy from the early reports on these with data is by Rodgriquez in JCO. You can look at that if you like. So what they did is 300 patients. They take the patients with small tumors and split them into "hi risk" and "low risk"...so hi risk: high grade, ER negative, or LVI. Low risk: ER+, grade 2, (rarely gr 1 that are HER2+), and no LVI. Tend to give tx to hi risk; no tx to low risk. Not randomized study. Very selective population. Decided to tx the hi risk and not the low risk. The hi risk had less recurrence - statistically significant difference. The low risk patients had more recurrences...so they are saying...that everyone should be at least offered treatment. They had t1a's. And there was no difference between t1a's and t1b's in the risk.

This discussion of this study really caught my interest.  I don't recall if I've looked at this one.  Probably have, but they all start to mush in your brain after a while.  I trust her analysis and summary.  She is really on top of all of this research, as you can tell. 

Is it too late for me to do chemo? (6 months post surgery) There is not much data. Only one study at Canada that looked at how long you delay chemo. 3 to 4 months, no benefit after it. However, if you look at Herceptin trials, late induction with it is still beneficial. So I would do it.

Heart disease in my family - should I be worried about taking Herceptin?   Was it coronary artery disease? Herceptin does not increase risk of CAD. It increases the risk of heart failure b/c of weakening of the muscle.  Father had CHF.  Was it secondary to having heart attacks? Yes.  ...well that is a little different that just CHF of it's own accord. What you need to do is the echos. If it shows EF comes down, follow guidelines for stopping, etc. Echo vs MUGA - both ok, studies done with both - as long as you are consistent which one that you use.

Herceptin shorter time - can I do say, 6 months instead of a year?:   the fact that we chose a year was completely with no data.  Study done with 1 yr vs 2 yr - not enough events to say 2 yrs better than 1. Current trials: 2 Italy and France - randomizing patients to 6 months and 12 months...we don't have data yet.

Ovarian ablation something I should consider?  You don't need OA. The benefit of OA is very small.

I had radiation first and am concerned about radiation recall: higher with anthracyclines. So this is her main reason she advised to stay away from them in my case.  

How do I reconcile the fact that I have received two very opposite opinions, from big institutions? "we all have different opinions, but when someone is as young as you are...the worst thing that could happen is if a year passes and you relapse and then it is not curable and you say "if I had done this" nothing is 100%, but at least you gave it your best try."

Ok, that's it folks.  I hope I didn't overwhelm you all with too much information/detail, but I figured it may help someone who is not able to go to MD And to see exactly how they'd react to a case similar to mine:  43 y/o,  3 mm HER2+, Grade 2 (mitotic 1), ER+ (90%), delayed diagnosis and radiation prior to chemo  

Oh boy vjm.  Sounds like you are in a VERY similar spot to me - almost identical except you are 1 mm larger and Gr 3 - but I don't know your age.  Take the time to read at least the last 2 pages of this thread - you will see that I have decided to proceed with TCH after meeting with MD Anderson yesterday.  I feel that doctor is the specialist in understanding t1a HER2+ tumors.  She has done most of the research (in the USA) that I have seen done on this particular subset of tumors, and she knows all the research inside/outside/down and all around.   I respect her advisement and am following it, despite being petrified.   I'm going kicking and screaming.  And I can't believe you, too, ended up having rads first.   I so feel your pain!!!  

Thanks so much Sue...yes, I'm taking copious notes, working on getting them organized today with a "to do" list and a "question" list.  Last night I ran my hand through my hair as I laid down to sleep and immediately went into meltdown mode.  Thank god I have a stash of sleeping pills (which I rarely use).  They were absolutely needed last night.   Not sure about the hair/cold caps thing still...gonna at least research it a bit more today before I make a decision. 

TLG, I sent you a PM about the cold caps - feel free to reply there or here.  I so appreciate the input!!! 

Beesie, you are so right!  LOL  I have to laugh at myself.  What a mental, emotional decision making process...I too wish I could just accept what I'm told and not worry, but my little analytical worrying brain is never gonna let that happen.  Ba-ha-ha!!!  I know, it's crazy!  First I almost was demanding, wanting chemo, then when I had time to get used to the idea of having a Her2+ cancer and was feeling "finished" with treatment after rads...I convinced myself I had overreacted and didn't really need the chemo.  However, I had already put the ball in motion to see MD Anderson when I was still freaked out, so on I went to the appt.   I did not get reassurance that it was ok to skip chemo, in fact, I got completely the opposite...LOL  So when I finally got the recommendation I initially wanted,  it suddenly became really real and oh SO scary!    It's so funny how our minds work!   TG I chose who I feel is the expert on HER2+ small tumors in the USA - b/c at this late stage of the game, she's the only one I'd listen to!  I sure am stubborn.  So, so funny and ironic how this has come full circle!!! Thank you so much for the encouragement and support through this process.