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AlaskaAngel · 10-22-2008, 07:05 AM

Hi Jean,

Your post is letting all of us vent, and hopefully that is a good thing.

I have very mixed feelings that are very much in context with where I fell in the timeline for the recommended treatments.

No one was routinely being tested for HER2, or treated for it routinely with trastuzumab when I was diagnosed. My surgery was done at a major cancer center and tested for HER2, but those results did not come back until sometime after all the other results were back, and I was never given the results for the HER2 testing. My onc neglected to even provide standard discussion about treatment, partly I think because I was primarily treated in Alaska and not at the cancer center -- and my PCP believed the onc had covered all of it with me while I was in Seattle. So I didn't know I was HER2+++ by IHC until I was almost 2 years out.

When the success of trastuzumab was announced, I and a lot of other HER2 positives were hanging off every bit of news, waiting to hear anything about what it meant for those of us who hadn't been in the trial. There was ZERO information provided to us.... day after day, week after week. We had to hear over and over what a "miracle" drug this was, and how "all HER2 positive patients now were going to benefit from this drug", but at the same time the actual result was limited to "all newly diagnosed HER2 patients". To us that clearly said loud and clear that even though our risk was identical to the risk for those who were newly diagnosed or even greater than some newly diagnosed with smaller tumors, etc., we were left in entirely in limbo. It was as if we simply did not exist to the oncology community. They didn't even have the humanity or wisdom to talk to us at all. How could that build any trust in what they are doing?

Eventually the information was provided to indicate that because we'd already had our chemo, we "missed out" because Herceptin "works better" with chemo (although there was no information provided as to the technical basis for this justification. And while I am at it, can anyone here explain more precisely why it works better with chemo?). At first the recommendation was that anyone who was within 6 months of completing chemo would be eligible for trastuzumab, and later that was changed to within a year of completing chemo.

No one has EVER explained why trastuzumab was not recommended for all of those people who were less than 2 years out from chemo. Considering that we are told over and over that HER2's are at greatest risk during the first 2 years, what sense could it possibly make to deny those who were over a year out from chemo and less than 2 years out the ability to have trastuzumab?

I was past 2 years out at the time. My onc was willing to provide but not in favor of it. A second opinion from the same major cancer center was the same. I chose not to have it.

I am 6 years out and so far, still NED. I know there is a percentage who get it and think they are benefitting from it even though they get no benefit. I know there is a percentage that fail on it. I'm glad that so many here have benefitted from it. I too find it appalling that for some the testing for HER2 still apparently is not routine.

I have very mixed feelings about how the oncologic community has responded to those of us who are HER2 positive.

10-22-2008, 07:05 AM	#22
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	Mixed feelings Hi Jean, Your post is letting all of us vent, and hopefully that is a good thing. I have very mixed feelings that are very much in context with where I fell in the timeline for the recommended treatments. No one was routinely being tested for HER2, or treated for it routinely with trastuzumab when I was diagnosed. My surgery was done at a major cancer center and tested for HER2, but those results did not come back until sometime after all the other results were back, and I was never given the results for the HER2 testing. My onc neglected to even provide standard discussion about treatment, partly I think because I was primarily treated in Alaska and not at the cancer center -- and my PCP believed the onc had covered all of it with me while I was in Seattle. So I didn't know I was HER2+++ by IHC until I was almost 2 years out. When the success of trastuzumab was announced, I and a lot of other HER2 positives were hanging off every bit of news, waiting to hear anything about what it meant for those of us who hadn't been in the trial. There was ZERO information provided to us.... day after day, week after week. We had to hear over and over what a "miracle" drug this was, and how "all HER2 positive patients now were going to benefit from this drug", but at the same time the actual result was limited to "all newly diagnosed HER2 patients". To us that clearly said loud and clear that even though our risk was identical to the risk for those who were newly diagnosed or even greater than some newly diagnosed with smaller tumors, etc., we were left in entirely in limbo. It was as if we simply did not exist to the oncology community. They didn't even have the humanity or wisdom to talk to us at all. How could that build any trust in what they are doing? Eventually the information was provided to indicate that because we'd already had our chemo, we "missed out" because Herceptin "works better" with chemo (although there was no information provided as to the technical basis for this justification. And while I am at it, can anyone here explain more precisely why it works better with chemo?). At first the recommendation was that anyone who was within 6 months of completing chemo would be eligible for trastuzumab, and later that was changed to within a year of completing chemo. No one has EVER explained why trastuzumab was not recommended for all of those people who were less than 2 years out from chemo. Considering that we are told over and over that HER2's are at greatest risk during the first 2 years, what sense could it possibly make to deny those who were over a year out from chemo and less than 2 years out the ability to have trastuzumab? I was past 2 years out at the time. My onc was willing to provide but not in favor of it. A second opinion from the same major cancer center was the same. I chose not to have it. I am 6 years out and so far, still NED. I know there is a percentage who get it and think they are benefitting from it even though they get no benefit. I know there is a percentage that fail on it. I'm glad that so many here have benefitted from it. I too find it appalling that for some the testing for HER2 still apparently is not routine. I have very mixed feelings about how the oncologic community has responded to those of us who are HER2 positive.