Herceptin and Tamoxifen treatment without chemo?

I am 47, premenopausal, recently diagnosed with high-grade DCIS and IDC with a mucinous tumor .5 cm, no positive nodes (0/19), 95% ER+, 60% PR +. HER2 strongly positive (10.1 FISH).  I had a mastectectomy with all clear margins.  I am seeking two opinions from oncologists about further treatment.  One ordered an Oncotype DX test to verify HER2 resuls which seem out of character for the other characteristics.  We're waiting for results.  The other has suggested several choices of treatment: Tamoxifen alone; chemotherapy (possibly Taxotere, Carboplatin and Herceptin; or Tamoxifen and Herceptin alone.

I am told that I have a very rare set of characteristics.  Do you have any ideas about what factors to base the treatment decisions upon and any idea how effective a tamoxifen/Herceptin combination would work without chemotherapy?  Are there other people with cancer like mine?  Any other ideas that come to mind?  Thank you.

[Cheerpul]

I just realized I forgot to add that my tumor was grade 1, stage 1 in my original post.

[katarina777]

I had chemo and it shrunk my tumor but it did not touch, even the least bit phase, and that was TAC, any of the DCIS component in the breast. So for whatever this info is worth, I thought I would tell you. Of course I had a mastectomy, but not until after I had chemo and it showed then about the DCIS. I had IBC and there was a lot more than DCIS.

[Cheerpul]

Thanks for posting.  I must have been so brain-warped when I posted that I also forgot to add that I had a mastectomy as the surgical treatment.  That took care of the local DCIS and IBC, but now the next step is being debated.  The oncologists are looking at chemo or no and telling me it is unknown territory, so it's up to me .  I can push for or against and they'll go with it.  It's a bit scary, since I only began my crash course of BC study 8 weeks ago and they are the experts (one local and a team at a large research hospital.)

[katarina777]

Well, I am ahead of you and I'll tell you all I know. First, you have IBC as in Inflammatory breast Cancer, or what exactly as I know most about IBC. Also, you did say you had a mastectomy and I missed it. And then what about radiation? Is anyone considering that?

Also, the chemo hardly worked on my positive lymph nodes. I know you didn't have any but I just want you to know that chemo does better on the breast and supposedly distant micrometasteses than it does lymph nodes.

MY doctor then told me that hormonal treatment works a lot better on a lot of women than chemo, and you know they are both systemic treatments. But I also think that if you are to be among the ones to get this bc back, the hormonal treatment delays recurrence. And I think it is really important.

It may also be of advantage to save something like chemo incase you ever need to have it in the future. Sure, you can do different chemo again should you need it in the future but usually these things are most effective the first time.

Normally of course with mastectomy you would not have radiation, as opposed had you had a lumpectomy. With me they did because my cancer is so aggressive and the positive lymph node status but then again you can only radiate a breast once and it may be good to save up.

I don't think doctors think that way as it is the first round of treatment they out all their weight on and the very best time to wipe it out. But then chemo is not so great either and especially if the benefits do not outweigh the risks.

It's good though that you are hormone positive and it really does make a difference even if it also ***** a lot in other ways.

KAT

[bluebutterfly2222]

In your original question you said you had IDC and in your additional comment you said IBC. We all make typos, but it would help us in answering to know which you had...

Thanks,
bluebutterfly

[bluebutterfly2222]

In your original question you said you had IDC and in your additional comment you said IBC. We all make typos, but it would help us in answering to know which you had...

Thanks,
bluebutterfly

[Cheerpul]

I have IDC, not IBC.  However, the saga continues.  My Oncotype DX results are in and, due largely to the HER2 score, my recurrance score is 31.  By phone, with the oncologist from U of Michigan, she recommends chemo of Taxotere, Carboplatin and Herceptin followed by Tamoxifen.  We are meeting Tuesday.  I am now leaning toward chemo at this time.

[bluebutterfly2222]

Most of your characteristics are pretty positive (smaller tumor, no node involvement, clear margins, ER+/PR+) but HER2+ is a concern, because it tends to be quite aggressive and more likely to spread and/or recur.

Therefore, I think chemo is wise, and herceptin is specifically indicated for Her2+ tumors. Your Oncotype score probably makes the decision easier for you (although still difficult  to accept, no doubt!).

Many of the members of this community have been through chemo, and will be able to offer you information, advice, and support if you should need it.

Best wishes...

[Cheerpul]

Thanks so much for your thoughts.  I have had conflicting medical advice and had to ask more of the oncologists that I saw (one local and one at a research hospital) for opinions than they were offering at first.  They took the standard of care (1 cm or greater, no nodes, etc.) and were wishy-washy on the significance of the HER2.  I was told that chemo would be overkill, and maybe I could try Herceptin and tamoxifen, but , since there have been no direct studeies of these drugs as adjunctive treatment for such a small tumor, maybe it would work or maybe not. It was up to me.

Meanwhile, my surgeon, who thinks in a more holistic way, had suggested all along that I should seriously consider chemo.  

You're right,  the Oncotype score gives me (finally) something more tangible upon which to base my decision.  That makes me more comfortable.  I haven't had a problem with acceptance, though.  You know, bad things that happen just "are".  There's no ulterior reason.  So once something exists, you just deal with it.  That's where I am right now.  Tuesday and Thursday, I see the two oncologists and will choose which one is going to treat me.  In the meantime, I am trying to get some big jobs done at work and at home and rehearse for the 3 concerts that I am singing over the next two weeks.  And, I am more thankful than ever, that I had my annual mammogram and they found this thing so small.  So, when I sing, "Rejoice, Greatly, O Daughter of Zion" I will mean it!