[AlaskaAngel]

When I was diagnosed and treated in 2002 for Stage 1 breast cancer that is strongly HER2-positive, I was excluded from the clinical trials offering Herceptin. I am among those whose tumors measured less than 2 cm and am node-negative. The same scientific community that said I was not at enough risk to qualify for the Herceptin clinical trial simultaneously decided that I was at enough risk that I should go through all the trauma and expense of chemotherapy. I am among those whose tumors measured over 1 cm and am node-negative. By national standards outlined by the scientific community, the standard chemotherapy that was recommended to me included the possibility of serious damage to the heart based on scientific research. The same research could not say definitively that the chemotherapy offered would protect me from recurrence or metastasis.

When the first major results of the Herceptin trials were announced earlier this year, as a breast cancer patient who tested strongly positive for HER2 I was watching and listening to each public announcement. The announcements indicated broadly that Stage 1 breast cancer patients would be able to receive and benefit from Herceptin – but only those who were part of the clinical trial or who had recently completed treatment were recommended to receive Herceptin. Those breast cancer patients who tested strongly HER2-positive and who were excluded from the clinical trial or who completed chemotherapy much earlier have been refused the opportunity to scientifically verify that they will benefit from receiving Herceptin now.

If I were newly diagnosed this year with the same exact cancer characteristics, I would be eligible to receive Herceptin, even if I also completed the same chemotherapy and radiation that I completed in 2002. Please take the time to be sure you comprehend that last sentence.

Many of these women were never even tested to find out whether their tumors were HER2 positive or negative. Many who were tested were never told the results, and many never were told the results could be important. In my case my doctors never gave me the results. I had to request my medical record myself to find out.

Herceptin therapy, much like the standard chemotherapy already received, includes the possibility of serious damage to the heart based on scientific research. Chemotherapy includes other risks that Herceptin does not. Patients on Herceptin are to be carefully monitored for possible heart damage, and often it is reversible. The risk of heart damage is not a reason not to offer Herceptin to those who have the exact same diagnosis as I do and who have more recently completed the chemotherapy I have completed.

Because testing for HER2 has not been standard until now and thus there are no reliable long-term statistics about survival or recurrence rates for women in this group, we are advised that no one truly knows exactly how much greater our risk is than the wider population of all breast cancer patients. Obviously, if the scientific community is now recommending that women with the same exact cancer characteristics at diagnosis who have completed treatment should have Herceptin, then there is reason for us to believe that we should be eligible to receive Herceptin also.

The scientific community that set the parameters for the clinical trials has not stepped forward to accept responsibility for the lives of this group of women. Perhaps they will have the intelligence and integrity to do so at the Annual Cancer Conference in Vancouver, as well as at the annual San Antonio oncology conference in December. If not, those who provide funding for scientific investigation should bring those responsible in the scientific community forward to address this problem in a meaningful way now.


AlaskaAngel