HER2 learning more is it a bad thing?

[AlaskaAngel]

Sweetsnflwr,

A bit of historical information might help you, because it may help to understand the actual lack of logic behind standard recommended treatment and why doctors "don't know" all the answers.

At the time Herceptin (trastuzumab) was being offered through clinical trials WITH chemotherapy to see whether the Herceptin would be helpful or not, for the most part "early stage" patients who were HER2 positive were not allowed to participate in the trials. Even after the trials for mostly later-stage HER2 positive bc patients showed Herceptin helped, for a while there was no recommendation for early stage bc patients who had "missed out" on Herceptin, to then be given Herceptin.

Over the years since then, the trials have not been done to show whether chemotherapy is necessary WITH Herceptin for early stage bc, or whether Herceptin ALONE is sufficient. It sounds pretty dumb to anyone with a brain and especially dumb to the people who have to go through the trauma, emotional and economic, of adding chemotherapy to treatment (along with all the support drugs for chemotherapy, such as steroids, blood boosters, etc.) But that is the status quo that all of us have had to base our choices for treatment upon.

Some of those who originally "missed out" on Herceptin found oncs who were willing to give them Herceptin "late". I am one who did not, and have never had Herceptin although I did have CAFx6 chemotherapy followed initially by some tamoxifen. I lost my hair and it regrew. I also had DCIS and a 1.6 cm IDC. I have not had recurrence. Some patients go all out and have the strongest therapies possible; some recur anyway and some don't, and most deal with the side effects of treatment regardless.

Age makes a difference. Younger patients have more recurrence. I was 51 at diagnosis.

It is hard to make the choices, based on the lack of adequate information.

AlaskaAngel

P.S. In the countries with more health care money and facilities, t is now standard to give chemotherapy plus Herceptin to patients with HER2 positive IDC. Some give 9 weeks of Herceptin and some give a year of it.

The first 2 years are the highest risk for recurrence, and from my vague impression of those on this board, those with early stage HER2 positive bc who have gotten past that point have generally not recurred whether or not they had chemotherapy and/or Herceptin -- but again, age also may make a difference.