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Hi!
Good post, Steph! So many do not know what it was like to be diagnosed as HER2 more than just a few years ago.
When I was diagnosed I received my preliminary path report in early 2002 and learned I was ER+/PR+ but there was almost no other info on it back then even though it was done at a major cancer center. The Herceptin trial was in progress. Although I knew nothing about it then and would not have been eligible to participate (node-negatives under 2 cm were excluded), I was not given the final path report, and my oncologist did not consider it important to tell me that I was HER2+++ by IHC. I had been under the impression that he would share that kind of information with me but he never did. So I never knew at time of diagnosis that I was HER2+++, but was still expected to make a decision about whether to do chemotherapy and radation. There was no KI# for me to take in to consideration. There was no OncotypeDx then. And even aromatase inhibitors were just for metastatic bc. How can one make a good decision when not only is there a lot to learn but what they do know is from the tests my insurance paid for is hidden from me?
Almost 2 years later the onc still had not told me I was HER2+++. I only found out because I was suspicious and happened to request my final path report.
Needless to say, I did not get trastuzumab as treatment. When the results of the traztuzumab trial were announced there was dead silence from the experts as to what those of us who were NED and were several years out should or shouldn't do. (Since we had not been allowed to participate in the trial, they now had "no data" to know whether we should go ahead and have trastuzumab or not!) Eventually a weak recommendation came out indicating that those who were more than 6 months out from chemo should not have it, since it was considered to work better when given with chemo and by then we were a ways out from having chemo -- plus there was concern about added cardiotoxicity. Then later that evolved further into 1 year instead of 6 months. This was idiotic to me. They freely admitted that the greatest chance for recurrence was in the first TWO YEARS, yet they were recommending initially that those more than 6 months out shouldn't get trastuzumab?!!!? This made even less sense to me since they recommended that almost all newly diagnosed should get the drug. These are the gurus of treatment to depend upon for recommendations?
By then I had also discovered that the tamoxifen I had been taking also had been under investigation for about 4 years as likely being an agent that added fuel to the fire for recurrence for some HER2 positives. My onc never discussed this with me. (After all, why should a patient be told the pro's and con's about a drug until there is more info as to which ones will die from taking it and which ones won't? But... isn't there some logic to the idea that perhaps those at least risk, i.e., early stage, might want to at least discuss it? Especially since drugs like tamoxifen have additional side effects as well?)
By that time Arimidex was available to early stage patients. Instead of having the professionalism to discuss the whole thing with me, he said only that I probably had become menopausal enough to switch to that instead.
Some others who also were part of the Lost Regiment of HER2s decided to argue with their oncs, and eventually they received trastuzumab. My onc neither favored it nor denied it and provided a prescription at my request. But by that time, lapatinib was on the horizon. I put trastuzumab on hold. Eventually the opportunity came around for the TEACH trial, but only those who had done chemo and had never had Herceptin were eligible. I could have had lapatinib vs placebo, and after much independent consideration, decided not to. I certainly may regret that eventually.
I continue to pay attention to what is being learned. I posted an article in the Articles forum today about circulating tumor cells that would argue in favor of my using trastuzumab, and I only wish I had a more reliable person to consult than the oncologist about taking it.
That is how I felt and feel now about being HER2.
AlaskaAngel
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