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

Thank you all for the precautions/concerns.  I am not downplaying them in my head, and I'm pretty scared of them.  Feel free to keep sharing all issues.  I prefer to make a decision knowing fully all the pros and cons. 

I just spoke (via email) with one of the authors of the 2008 MDAnderson study, and she said their facility is still recommending chemo/herceptin to t1A and t1B patients.  She said they did a second analysis and look at the risk by age group and use those tables to discuss with the patients their individual risk:  Age and survival estimates in patients who have node-negative T1ab breast cancer by breast cancer subtype.

I don't recall this particular study being posted before, but if it has, and has already been discussed, feel free to point me that direction.  

I'm going to get this study tomorrow and take a closer look.   

Thank you Diane for sharing!  I also have another thread I started for t1A sisters to share their experiences.  It's just getting started but you may want to check it out and possibly share your experience to help those who follow in our footsteps trying to make this difficult decision.  

 calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+

I interpreted both posts as coming from people who care very much about what happens to me, and want me to know in full the risks (albeit small or large) of what could happen, whether I decide to choose chemo or not.  Although I may panic when I first read something, I am level-headed enough (I think!) to go do my own research and try to find out the degree of the risk.  

I know that everyone on this board has my best interests at heart, and for that, and I am so, so TRULY thankful for all input.  So, ladies, I know feelings may be hurt on either side (I understand that, my feelings are easily hurt, too), but can we please call a truce?  I don't want my thread to go off in a negative direction with people angry at each other.  You all have helped me so much with your varying opinions, and we all are here with one common goal - live longer and happier and fight this damn beast. 

 Thank you Moonflwr912.  I believe this is the post you were thinking of perhaps:

http://community.breastcancer.org/forum/80/topic/781713?page=3#post_2828276 

Hey all, saw the onc today.  He continues to stand by his recommendation of no chemo/herceptin.  I have a dance class to get to soon, but will update more details and how I feel about this later (still uneasy).   Right now, time to forget about cancer for a while and go shake my booty!  

susieq, nope, he didn't even mention grade.  It was all about tumor size.  If I were 5 or 6 mm he would treat me.  He said the studies do not break out t1A from the t1B and are small numbers of patients anyways so one can't draw strong enough conclusions to warrant the risks of chemo/herceptin.  When I asked him about how some docs say biology of the tumor (HER2) should be considered instead of just looking at size, he agreed biology matters, but continued to reiterate that the studies are not there to say that it matters in as small a tumor as I have.   Basically, nothing tips the scale to treat - he has never treated anyone under 5 or 6 mm with chemo/Herceptin.   He wouldn't consider even one of the "lighter" regimens for for my size tumor.   He estimated my 10 year distant recurrence risk as 5%.  Again I brought up the MDAnderson study of a 15% distant recurrence risk, and he continued to say that it was a combo of t1a,b patients, you couldn't separate them out to determine risk by size b/c the numbers of patients in this group are too small to begin with - so I can't apply that study to my size tumor.  I asked him if my young age would make my any higher risk (and mentioned the MD Anderson study again), and he said not enough to warrant treatment other than Tamoxifen.  This is despite acknowledging Tamoxifen does not work as strongly with HER2+ patients, but it still works.  He said if I were his sister, daughter, etc. he would not treat me.  

He mentioned that even if we did it, insurance may deny it b/c the tumor is so small.  We asked if we paid out of pocket would he be willing to consider even just Herceptin alone (LOL, figured we'd pretend we could just to see the answer - told him we knew it cost ~ $100K and we could swing it).   Nope.  I just wanted to make sure money was not an issue in the decision making process.  It wasn't .  

I asked him why facilities test tumors this small if they are not going to use the test for any clinical treatment purpose.  He said it is just standard to run the test.  He acknowledged that HER2 is not routinely run on DCIS b/c it doesn't change treatment.  But they do run it on all IDC's.   I'm a bit p*ssed that if the test means nothing, why is my insurance billed for it, and why am I put through such emotional havok?  To what end?  Is it just so they can track me like a lab rat to see if I recur or not?  Sorry, I just really, really wish this test was never run on me.   

One interesting thing - I asked him about if chemo had been recommended, would it have been too late to start.  He said no, there is no real good study that can show one way or the other how soon you have to do chemo after surgery.  Interesting.   

When I told him I know of at least 4 t1a's here that have recurred with mets, he seemed a bit surprised, but then he said well 4 is not that many on a message board statistically (I know he's right, but I had to point it out to him that I know people DO recur.)

Even though he completely said no and gave me no options except Tamoxifen, I really loved the guy.  He spent lots of time with us, was completely open to our questions and was not defensive at all when I brought up questions, and generally was a really nice guy and easy to talk to.  

AussieKate, thank you for your two cents.   I have two more oncology opinion appts set up for next week.  We'll see what they say.  Just so you know, my onc today actually said the side effects of Herceptin are not terrible.  He said regarding the heart damage, the risk is relatively low, and usually reversible.  (Yet he still wouldn't prescribe even Herceptin alone for me.  This again is because he doesn't believe small tumors need this treatment.) 

Maja - ba, ha, ha, ha!!!!  I  love your onc's sense of humor!!!!!  OMG, you made me snicker, I really needed that!

So glad to hear you find my research valuable.  Sometimes I wonder if I am going on and on and on and on...LOL...however if just one person finds it helpful, I guess I'm not going overboard!  

That is really good to hear about the Herceptin - I keep hearing that overall it is tolerated well and that the majority of the time any heart issues can be reversed if caught in time.  How did you do with Taxol?  I've been reading that thread and see quite a few have developed neuropathy problems, had nosebleeds, etc.  Just curious! 

BTW, one other interesting comment made by my onc yesterday.  He said in Europe they are giving Tamoxifen for 10 years.  He said although data isn't in yet, he expects they will find 10 years is more beneficial than 5.  Until then, though, he said in the US we must follow guidelines.  It makes me wonder if this is another reason why he is so firm on the no tx for < 6 mm - perhaps his facility firmly follows guidelines, and does nothing off label.  However, MDAnderson, which again earned the No. 1 spot in U.S. News & World Report's annual rankings of the best hospitals for cancer care in 2011, does treat these patients (on a case by case basis, of course).  I guess they also believe, of course, in their own research, even though the sample size was small and mixed the t1a,b group together.  Things that make you go hmmmmm....