Newly Dx Her2 Questions

[Barb Ward]

Hi. I had a lumpectomy Sept9,04. I was Stage 1 Grade 3 Her2 pos. Hormone neg. Lymph node neg. Clear tumor margins, 2cm tumor. LOcal Oncologist wanted to do Pet Scan. Radiologist said they don't usually do a pet scan for stage 1 because only 5% chance of showing up.Also he wanted to start me on Adrimycin/Cytoxin.Followed by radiation. Is this the standard treatment? I am going for a second opinion in a week & half.Thanks so much,Barb

[jessica]

HI Barb-
Welcome...you'll find a wealth of knowledge & support here.I'm sure you'll receive a lot of input from other early stage folks on the board that will help you navigate your decision.
Since you are Her2+, I'd encourage you to find a clinical trial so that you could receive adjuvant Herceptin...currently Herceptin is only available to those of us w/advanced disease (at least I think that's still true).I've been on Herceptin since my initial diagnosis, and it has done a wonderful job controlling my disease, even NED for a year.This is true for many of us here.
We are changing the face of Breast Cancer survival!
Take good care & Keep the faith,
Jessica

[Anonymous]

Thank you Jessica. What is NED? Has the Herceptin made you sick?I appreciate your input. Barb

[Christine]

Barb
Ask your Onc if he would consider giving you a year of Herceptin every 2 weeks instead of A/C. Even though A/C has been the standard tx for years, it does not always work for HER2 + BC's.
I had it as my first line therapy and my cancer was insensitive to the A/C and my cancer still progressed. After 3 cycles I asked to stop A/C and go on the next line of chemo that should have been my 1st line of tx, Herceptin/Taxol. I had a similar profile ER/PRneg. HERR2+++, and grade 3.
If possible get on Herceptin instead, or seek another opinion. Hope you can understand that Herceptin is a non-toxic chemo, whereas A/C is called the Red Devil , for its potency, it can be useful in some cases, but I know from my readings that Herceptin is a targeted chemo, with good response and almost no side-effects. Please investigate further and get other opinions if possible.

[Merridith from Canada]

Hi Barb:

My diagnosis was similar to yours, with the exception that my tumour was slightly smaller (1.7 cm). I just finished my treatment in May 2004.

I received A/C (4 rounds) followed by taxol (4 rounds) every 2 weeks. They were able to do the chemo this quickly because I self-injected neupogen (this is expensive stuff) which supported my white blood cell count.

If you can take the rounds of chemo a little faster like I did, it apparently ups your statistical survival chances slightly.

As a stage I, you won't be able to get herceptin. HOWEVER, if your onc will give it to you off protocol or if you can find a trial that will give it to you (I don't think there is anything currently accepting for stage I BC right at this moment though), I would suggest that you pursue it.

Go to the M.D Anderson Hospital website. They are supporting some interesting research around giving a herceptin + taxol mix in the adjuvent setting to preserve breast tissue. They have published results that might help you persuade your onc to give it to you.

If you have further questions, feel free to email me directly.

Merridith

[lauren]

my understanding is that adria plus cytoxan is still the first line of treatment for a her2neu positive breast cancer, but that NOW they add a taxane to it, so that you would have four a/c treatments followed by four taxane treatments (possibly given in 12 once per week intervalsa). the addition of herceptin to the mix is a wonderful "insurance" policy - no guarantee, but helpful possibly, no one knows how helpful, but who cares, since it is relatively nontoxic, althoug there IS a risk of heart damage, which an occasional echo can rule out.

my advice is to GO with the therapy recommended to you PLUS the addition of a taxane PLUS, if possible the addition of a year of herceptin. It is what I would have pushed for if I were stage I (I was stage II, so it was easier for me to get all of that stuff).

Since you are hormone negative, you HAVE not other treatments up your sleeve - I would push for the most aggressive NOW., in the adjuvant setting.

lauren

[Sheila]

Barb
Your diagnosis is almost identical to mine, except my tumor was smaller 0.7cm, neg nodes, ERPR neg, Her2 3+. I had a mastectomy and no other treatment...wish I would have tried to find someone to give me Herceptin. I was placed on it 1 1/2 years later when mets to the lymph nodes occured. I was NED up until a few weeks ago (1 yr.) when more mets to the nodes appeared. I will stay on Herceptin now and Carboplatin will be added. Herceptin seems to be harder on the heart if you have had A/C chemo first. I have never had a problem with it in over a year.
You have found a wealth of information here from those of us who have been there!
Hugs and Prayers
Sheila

[Cathy W]

I believe standard proticol now is 4 A/C plus 4 taxol. Do them. Also, try to get the PET scan or at the very least a bone scan. You are at higher risk because you're er/pr- and Her2+