T1A (4mm), HER2+, No clear cut treatment plan

Hi there...I was diagnosed in May 2008.  I had a small 8mm tumor.  I had a lumpectomy with no node involvement. My tumor was ER positive and Her 2 positive.  I followed a trial at that time through Dana Farber and Sloan Kettering which many on this site have done.  It is for small (under 1 cm, node negative Her positive tumors) I received Taxol and Herceptin for 12 weeks straight and then finished the Herceptin every three weeks for the remainder of the year.  This treatment was very manageable. I believe that this is now a standard of care for similar tumors. Hope

Hi, JSandstrom.  Whatever direction you are leaning, you might ask to see the studies on which the recommended protocol is based.  Some patients would be unlikely to agree to a treatment that isn't derived from a protocol that produced the best available results, unless it was in an advanced situation.  Having said that, I asked for a second year of Herceptin, even though that protocol is linked to a study that is not yet complete.  But that's on top of, not instead of, a complete course of chemo and Herceptin.

You can look these protocols up online, and some of them are linked to this website and others like it.    

I hope this helps; there is nothing easy about early stage treatment decisions.  

Cathy 

There is actually a great retrospective study from MD Anderson on Her2 gals that were <1cm at dx. This study made it crystal clear that all tumors Her2 positive should do chemo, the relapse rate was high somewhere over 25 percent for the <1cm after no treatment.

 I would highly suggest forging ahead with treatment. 

My tumor was originally sized at .7mm - after the mastectomy, they said it looked more like .9cm - but they weren't sure (since the biopsy removed a lot and left a lot of scar tissue). My onc was shocked that it was Her2+ since it was "only" a Stage 1, Grade 1 tumor - so he sent it out to an independent lab for a second FISH test and it came back even more highly Her2+. So without a second's hesitation he said I needed Herceptin for a year - but to reduce toxicity to the heart - he put me on 4 months of Navelbine (every two weeks given with Herceptin).........it was very manageable; I didn't go bald (got a bit thinner) and had very minor digestion issues that lasted only a few hours.

Ask your onc if he's absolutely sure your tumor is Her2+.........get a second pathology lab to test the tumor if necessary - then if it really is, go for the Herceptin - if the onc won't give it to you without any chemo then ask if he can give you Navelbine. Good luck with your difficult decisions!

P.S. Edited to add:  is there any chance you could have your tumor sent out for Oncotype DX? Mine was (before the results of FISH were know)..........it might help you in your decision making.

Go for Herceptin and chemo. HER2 is nothing to fool around with.  Another way of looking at it perhaps--if you are trying to avoid the toxins now, you can do that but with HER2 being so aggressivie--you could possibly develop mets later and then you will really have to be treated wit very agressively, much more than the protocol you are looking at now.  Good luck, this is a very difficult part of the process but once you have decided which is the best treatment for you, things will settle down and you can begin treatment.  And before you know it, treatment will be finished.

mmm5 meant to say recurrence rates are high even for tumors< 1 cm.

Please see this link for statistics (from bluedasher):

http://community.breastcancer.org/forum/80/topic/742119?page=1#post_1556180

I read a subgroup analysis that indicated even very small Her2+ tumors <0.5 cm have high similar recurrence rates as tumors that at 0.5 cm to 1.0 cm.  No way would I go without at least a mild chemo + herceptin (such as taxol + herceptin)

Link to MD Anderson press release discussing a stude re: early-stage breast cancer patients with HER2 positive tumors one centimeter or smaller are at significant risk of recurrence of their disease.

http://www.mdanderson.org/newsroom/news-releases/2008/early-stage-her2-positive-breast-cancer-patients-at-increased-risk-of-recurrence.html

I followed the middle link that Iago posted from Susan Love's site and IMO it is very out of date and especially is not good advice for someone who is stage I. Before Herceptin, Adriamcyn had a treatment advantage over the other chemotherapies for HER2+ tumors. But now we have Herceptin. Therapy with Herceptin plus a Taxane is about as effective as therapy with Adriamycin and Herceptin (there was no statistical difference between AC-TH and TCH arms in the BCIRG 006 study). Using a therapy with Adriamcyn and Herceptin greatly increases the risk of heart problems (over 2% of the women in the AC-TH arm had a grade 3 or grade 4 CHF develop). Both AC-TH and TCH were much more effective at preventing recurrence than AC-T (an Adriamycin therapy without Herceptin).

Susan Love doesn't seem to be keeping her website up to date - the first page only mentions earlier studies but doesn't include BCIRG 006.

They only recently started testing lighter therapies for Stage I HER2+ tumors. There are trials under way for 4 cycles of TCH vs 6 cycles (which is what BCIRG 006 tested) and using Taxol plus Herceptin. There are also some studies of Herceptin only for elderly women for whom chemo would be too great a risk. They all started fairly recently so none have published results and it may take several more years before they do. 

I did TCH because it was a therapy that had been tested and shown good results with less side effects and long term risks than the other tested therapy AC-TH. I think that Taxol or Taxotere plus Herceptin would have also been a good choice for Stage I because the Carboplatin adds its share of side effects. 

My tumor was 7mm.  My onc said that there are no "nice" HER2+ cancers.  I did TCH x6 plus the year of herceptin without a question in my mind as to whether I was doing the right thing or not.  I agree with what mommichelle said:  this may be your only chance to have it cured.  My thouhts are, if it comes back, at least it won't be because of something I didn't do.

In most cases if the tumor is 5mm-1 cm, chemo and herceptin is usually recommended (I think the ASCO guidelines use the word "considered") but I think that most doctors treat it unless there is a reason for not being healthy enough for it.  With yours being 4mm, that to me is too close to the 5mm cut off.  If it was 2mm or maybe even 3mm,  I might think differently.

Dear jag

I recommend treating as Her2+ and get chemo + herceptin.  It turns out that Herceptin significantly reduces risk of recurrence about 50% for tumors that ever tested her2+, regardless of method or degree.  The details are shown in the abstract of the study below.  If you are not familiar with clinical studies, let me know and I will explain the rationale in detail

jag- I had a similar situation to yours. IHC from biopsy came back equivocal, FISH from biopsy came back highly positive but I asked them to retest on the lumpectomy tumor which came back negative. To make a long story short, the conclusion was that my tumor was heterogeneous and for the most part was HER2- but there were sections of the tumor that were HER2+.

The tumor was grade 1 and my oncotype came back 19 (low intermediate) so with all of that information in hand my onc decided to treat with Taxotere/Cytoxan x 4 plus the herceptin for a year. For me the TC was very manageable and I have no side effects as of yet from herceptin which I've been on for 3 months. My veins were good so with this regimen, I'm doing this without a port and I have no problems. Also, I used penguin cold caps so I didn't lose my hair with the TC.

Like bluedasher - I was shocked at how outdated Dr. Susan Love's site is.

JSandstrom- Although I did not have a very small tumor I still agree with the posting on this thread that you should treat the HER2+ part of it. In the past, tumors that small were not even detectable so hopefully now that they are detecting the tumors earlier there will be more treatment information available.

Jag - I think your onc is right about the oncotype. They do have test results for node positive but between the node and the HER2+ I'm not even sure insurance would pay for that test. With the 1 positive node I can understand your onc wanting a more aggressive treatment, however as bluedasher pointed out, the combination of AC and H increases the risk of heart problems. If you are definitely going to get herceptin you might want to talk that over with your onc.

As far as the caps, you can check out the thread - Cold Cap Users, Past and Present to Save Hair. It seems to work with all breast cancer therapies - some better than others. It depends on the individual as well. Thickness of hair and liver condition are other factors as well. It definitely is a bunch of work for sure.

I had an area of micro-invasion of 1.2 mm, er-, node neg, but HER2 positive.  I knew I was in a gray area and thought that there would be some discussion as to a course of action, but my MD Anderson oncologist said that the best results will be with AC-TH treatment.  It took days for me to accept the risks involved with the adriamycin.  But I finally decided that I would rather not slowly die from cancer recurrences.  I researched and found a good article stating the risk factors for cardio-toxicity and I realized that I am in a low risk group ( age, good heart function, and less than 400mg/meter squared cumulative dose.)  Studies show that if one stays below that dose, there is less than  3% risk of heart problems.  So, I am trusting statistics.  I'm still worried, but I am at peace with the regimen.

Dr. Love doesn't appear to be keeping her web site answers on Herceptin up to date - for example the answer on what type of chemo therapy. And she doesn't have anything addressing the particular issue of Stage I.

MD Anderson released a retrospective study in December 2008 that looked at outcomes for node-negative tumors less than 1 cm no chemo and no Herceptin.  For HER2+ tumors, they found 5 year recurrence free survival was 77% and 5-year distant recurrence free survival was 86%. For comparison, those numbers were 95% and 97.5% for hormone+, HER2- and 85% and 96% for tripple negative. So the HER2+ group had about 23% risk of recurrence and 14% risk of Stage IV metatstic recurrence.

It is that sort of data that is changing the view on whether chemo should be given for HER2+ Stage Ia and Ib tumors.  Even if the NCCN guidelines haven't been changed to reflect that yet, there is a lot of thought that chemo should be given for all invasive HER2+ tumors, even the very small ones. Then the question becomes which chemo.

BCIRG 006 tested AC-TH and TCH vs AC-T for HER2+ patients. For node negative (which would have included larger Stage 1c and II tumors so our Stage Ia and 1b numbers should be better), disease free 5-year survival was 93% for AC-TH, 90% for TCH and 85% for AC-T. That is quite an improvement from the 77% MD Anderson found with no chemo.While AC-TH chemo had slightly better (but not significant) results, it also carries a much greater risk of heart damage and a small risk of leukemia. Those risks, IMO, outweigh any slight improvement in disease free survival especially for Stage I.

A "lighter" chemo plus Herceptin such as Taxol or Navelbine plus Herceptin may be enough for Stage I but the studies on this were only started a few years ago and last I checked they hadn't released results yet.

Diane, The San Antonio Breast Cancer Symposium was Dec 6-10. That's where a lot of research is presented. Sometimes they have interim results of studies.