HER2 Positive/ with no Chemo or Herceptin

I would take the Herceptin too.  It does pose risk of heart problems but if you are on it they check your heart every 3 mo.  If they see any issues they stop.  I have had very little noticeable side effects from Herceptin.   If they give you the option of this drug I would take it.

My treatment was sort of upside-down by today's standards for HER2 positive disease (CAF, rads, and a brief course of tamoxifen) but no trastuzumab. I just mention it as a way of saying that there IS someone with HER2 positive disease who did not have trastuzumab has not recurred to date. (Me.) It was in trials back at the time when I was diagnosed and although I told my onc I wanted to participate in a clinical trial, he never told me about the trials.

There are people who have done trastuzumab without chemo, usually by seeking out a private oncologist who is not tied to any particular institutional facility. My HER2 positive friend with bc over 1.0 cm chose not to do chemo but did rads and trastuzumab and she is over 7 years out now without recurrence. Some medical coverage may not pay for trastuzumab when given without chemotherapy so be sure to check. Since the majority of oncs you have seen do not recommend chemotherapy in particular, you might be able to get your insurance to consider paying for trastuzumab alone.

I would also recommend doing the trastuzumab at least, even though I did not have it myself. It is very expensive, however.

Rlsteadman, no recommendations from me.  I'm not a doctor, after all.  But here are some thoughts and some information. 

Talking to a general HER2+ audience is going to skew the type of responses that you get.  There is no question that HER2+ cancer are very aggressive and aggressive treatment - chemo and Herceptin - is given even for very small tumors. 

But your tumor is tiny and I think you'd be hard pressed to find many women who've been prescribed chemo and Herceptin for an HER2+ tumor that is as small as yours.  As rozen mentioned, current treatments standards suggest chemo and Herceptin only for HER2+ tumors that are >5mm in size.  However in practice, it's not uncommon to find women with tumors as small as 4mm or even 3mm who are prescribed these treatments.

Here are the current treatment standards (patient version):  NCCN Guidelines for Patients - Breast Cancer   The guidelines for hormone negative, HER2+ cancers can be found on page 74.  Treatment guidelines are based on an assessment of risk vs. benefit.  In not recommending chemo and Herceptin for those who have tumors smaller than 6mm in size, the assumption would be that the benefits from the treatments (in terms of breast cancer recurrence risk reduction) may be outweighed by the side effects and risks from the treatments themselves.

Here is a link to the discussion thread that rozen mentioned:  calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+

The size of your tumor is actually just a tiny bit larger than a microinvasion (officially for a tumor to be classified as a microinvasion, the largest dimension should be no more than 1mm in size).   So the discussion in this thread might be relevant to you too: Micro-invasive DCIS that is her2+++

Lastly, here is a link to the Physician's version of the NCCN guidelines:   http://www.nccn.org/professionals/physician_gls/pdf/breast.pdf   This version of the guidelines provides more detail and explanations than the Patient's Guidelines, but you do have to register to be able to access the file (you'd don't have to be a physician to register, however). The page (page 19) that reviews treatment guidelines for hormone negative, HER2+ cancers includes the following footnote:  "The
prognosis of patients with T1a and T1b tumors that are node negative is
even when HER2 is amplified or overexpressed. This is a
population of breast cancer
patients that was not studied in the available randomized trials. The
decision for use of trastuzumab therapy in this cohort of patients must
balance the known toxicities of trastuzumab, such as cardiac toxicity, and the uncertain, absolute benefits that may exist with trastuzumab therapy."

None of this means that you should or shouldn't have these treatments. That's your decision to make, along with your doctors.  But I hope that this information is relevant and helpful as you make this decision.

Patti,

So sorry that you are having to deal with this again.

Is your tumor 0.4mm or 0.4cm?  0.4cm is 4mm and that's close enough to the line for chemo and Herceptin that I think most oncologists probably would agree to prescribe these treatments, even if it's not part of their 'official' treatment recommendation.  And I suspect that many would in fact recommend these treatments for an HER2+ tumor this size.  That's my guess based on all the women I've seen come through here with a tumor around that size.

But if it's 0.4mm, I doubt that many, if any, oncologists would agree to prescribe chemo and Herceptin.

I read just now this topic, but maybe it can be helpful for some of you. My diagnosis was infiltrative ductal karcinoma 1a stage, but 3 grade not so small, 13mm. And also found other, smaller one in the same breast (in siitu, 0,7 mm). So maybe its good I chose to do mastectomy.

So, about treatment. I wish I wouldnt be so scary when I was diagnosed, my minds was so dark, the doctors around me they all was telling my that I am not gona live long if I dont do chemo and etc, and I done chemo, but just two rounds (should be eight), and then said no, because my body said to me so, after first chemo I was hospitalised because of serous neutropenia. After second chemo started alergic reaction. So I asked herceptin alone. No radiation. Just herceptin. So now I am finishing herceptin treatment. Just in the end of treatment I feel side effects, it is fatique, and sometimes joint pain.

If somebody ask me an advice- I am not a doctor, but I will do herceptin alone, without chemo. Chemotherapy is just for strong bodies:)

Hap - As I think I told you on another thread, I was 69 when I started chemo & herceptin. My only side effect was a runny nose - as long as I had the infusion run over at least 60 minutes.