small (<8 mm) HER2+ and chemo?

bcinfo

Diagnosed in Sept (2008) with 5 mm HER2+ (ER-/PR-) IDC, no nodes.  Had lumpectomy and partial breast radiation. Now,  my doctors are really undecided about chemo+Herception. Because Herception has to be given with chemo, chemo would be necessary. On the other hand, the 5 mm is really small.  Have most or many women here with this small of a tumor undergone chemo? If the doctors do decide on chemo, they say 12 weeks AC, then Taxol+Herception, for a total of 15 months. Wow. That seems like a long time of treatment. Any thoughts appreciated - you guys rock!

AlaskaAngel

bcinfo,

This is a good site, but for your particular question you might want to see what you think of the her2support.org website, especially on the newbies forum there, where there are quite a few "threads" you can read through that include questions like yours and the responses pro and con about treatment.

AlaskaAngel

Liz08

bc-

here's a link to the National Cancer Comprehensive Network Guidelines.

http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

Click on breast cancer and you can see what is recommended for your particular diagnosis.

I think you fall right on the border between chemo and no chemo according to the printout I have from last year from the NCCN.

 As AlaskaAngel stated the www.hersupport.org is a great source of info for those who are her2+++.

Wishing you the very best in your journey.

BBLady

bcinfo - I was dx in April with 4mm IDC, no nodes, her2+ and ER/PR-.  My doc also said I was in a gray area as to whether or not I needed chemo and herceptin.  He got three opinions for me from NIH cancer center specialists and all recommended chemo but no herceptin.  I had 4 rounds of taxotere and cytoxan and finished in August.  It's a tough call.  I am surprised at the amount of chemo that your doc is recommending.  Have you gotten 2nd opinion?  I would definitely do that before committing.

Hope you make a decision that you are comfortable with and hope all goes well for you.

Kathy

Yogi70

The standard for Herceptin right now is either every week or every 3 weeks for a year. I am Stage 3c Grade 3 ER/PR- HER2+ with 13 positive nodes. I did 4 DD of AC every other week and 12 weeks of Taxol with Herceptin weekly and now I'm just on Herceptin (also going thru radiation right now). I only did 5 months of chemo total. I'll be finished with herceptin in April. Herceptin does not necessarily have to be given with chemo although it does work better in conjunction with chemo.

bluedasher

I was in about your situation - my tumor was 6 to 8 mm according to the post surgery pathology report. You don't mention grade or your age which might make a difference, mine was grade 2 and I'm 56. That makes risk of recurrence in the next 10 years about 20% and risk of mortality about 6% (though those are from Adjuvant on line which doesn't take HER2+/- into account). Chemo can cut those risks in about half.

At those risks, I didn't feel that a treatment with Adriamycin (the A in AC-TH) was worthwhile. It can damage the heart and the damage can be long term. It also carries a slight (<1%) chance of developing leukemia latter. If it damages the heart, one might not be able to get the Herceptin part of the treatment. If AC-TH was my only option, I think I would have decided not to get chemo.

On the other hand, TCH was compared to AC-T and AC-TH treatment for HER2+ breast cancer in a trial (BCIRG 006). Both TCH and AC-TH did much better at reducing recurrence than AC-T (BTW the "C" in these treatments varies - in TCH it is carboplatin; in the others it is Cytoxin). TCH and AC-TH did about as well. TCH avoids the long term risks of AC-TH and is suppose to have less short term side effects. I think this is the only study of TCH with released results; AC-TH has been around longer so it has been in more studies and has longer term results. But given my low risks even without chemo, TCH seemed a better treatment.

They determined by blood tests that they can maintain the same levels of Herceptin by doing a higher dose once every three weeks or a lower dose once every week so the two should be equivalent. I will be getting the once every three weeks during TCH and then for the rest of  the year. Some doctors do Herceptin once a week while doing the TCH and move to once every 3 weeks when using it alone - I don't know why.

Herceptin without chemo is "off label" I think - there haven't been studies on using it alone so some doctors won't do it and some will. 

Misty1

Hi,

I was in the same boat as you-I'm 40.  Mine was .6mm, ER+, Her2+++.  Had a mast. so no rads.  Will take tamox.  My onc. was on the border of yes or no.  I wasn't going to do chemo.  Then, I got a 2nd opinion, and she said definitely do it.  I went back to the first onc and decided to do 4 TC(cytoxin) with Herceptin.  I finished the chemo on 9/30 and am now just doing herceptin by itself until July.  Chemo was not fun, but doable.  I still worked and went to the gym as usual and made it through with no real problems, other than bad tastes (and the hair loss!!)  In the end, I hope this keeps any recurrence away from me.  I know that I did all I could do.

Good luck with your decision.

~Misty

jill323

Hello -

I was in a similar situation to yourself.  I am 43 and had a tiny little IDC portion that is at least 4mm, but difficult to tell how much larger because it was "torn apart" in the biopsy.   But, definitely not larger than 1 cm.    After seeing two oncologists - who originally could not have been further apart in their recommendation - we got together on a regimen that consists of Taxol + Herceptin and then just Herceptin.   Similar to what you are seeing on this thread, the use of Herceptin is not "clinically proven" in a setting that does not contain chemo.   So, I finally relented in taking chemo (albeit a lighter course) to get Herceptin, which would have been the main factor in limiting my recurrence risk. 

As Bluedasher mentioned, your age definitely plays a role in this.   I think they were more "aggressive" with my tiny tumor than they would have been had I been older.   One of my oncologists originally wanted to throw the book at me - with a regimen similar to what yours said.  That seemed really over the top to me, which is why we got a second opinion.   While the second doc was the other extreme, the calibration they got from each other helped, and we landed on a treatment course that made sense for me in terms of balancing side effect vs. recurrence risks.   I just took my first chemo yesterday.  

It comes down to a very personal call - how much risk do you want to take for what benefit.  If the warning bells are going off in your head on this, (as they were for me too), a second opinion may be warranted to calibrate your situation.  Also, make sure you ask them to "model" your recurrence risk.  I was looking for a regimen that would get me down to single digits in terms of recurrence risk.   

I hope this helps !  Best of luck with your decision.  Let us know where you come out.

Jill

bcinfo

Thanks for all your thoughts, and the links to the Her2+ forum as well.  Age is 53, and the tumor was stage 2 so almost the same as bluedasher. Lots of info here -- time to start looking into other opinions, etc.  Thanks again!!

sandee107

I have a similar diagnosis except that I am ER+/PR-/Her2+.  I had DCIS and IDC less than 1 cm.   Because all cancer was removed in the original biopsy and my lumpectomy showed no residual tumor, my onc did not feel chemo/herceptin was needed and that additional benefit would be miniscule (his words).  My breast surgeon also concurred with his findings. I am highly ER+(96%) so I am on Femara for 5 years and I had 33 rads.  Coming up to 6 months and getting a little nervous about that next mammo.

Good luck and keep us posted.

Sandee

nixieschaos

I did I think, six rounds of AC (once every three weeks) then Taxol and Herceptin once a week for six weeks, and now every three weeks, just Herceptin. I was going to have a completly different course of treatment, until I went to see a family friend, who is one of THE top breast cancer guys in the country. He had my doc revise my treatment plan. I trust his recommendations. The chemo and my lifestyle changes and some alt. medicine kicked butt. I am stage IV though. The AC is pretty agressive...maybe too agressive for you? What state are you in?