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Becky · 07-04-2006, 07:26 AM

I do think that the outcome statistics we read are for all bc lumped together. Those that are Her2+ or triple negative are not looked at separately. This became evident in May, 2005 when the ASCO presentation on adjuvant Herceptin was given. As many of you know by now, I was 3 months from my last chemo at that time (so I was in the initial population of women of whom the NCI and ASCO recommended to be given Herceptin immediately (ie: 6 months or less from the last chemo tx. This was later changed to 12 months from the last chemo tx)).

Ironically, I had what was to become my first every 3 month check up so I excitedly discussed the Herceptin news with my (then) oncologist. He promptly told me that I was NOT in the population and that it was 6 months from diagnosis and I was 9 months from diagnosis. After insisting that I did not hear wrong, he still would not listen. I left with a copy of my chart and was able to secure an appointment at Sloan Kettering who told me that they were just starting the program and as long as I had my chemo records to prove when I had chemo, I would receive Herceptin.

I called my (then) onc and told him what I was doing (2 days after the diasterous appt). He then said, if I was so adamant, he would give me the Herceptin. It was then we discussed statistics (since adjuvant Herceptin improves those). He told me then that at Stage 2A and Her2+, I had a 67% 5yr disease free chance. That is significantly different than the overall statistic of 88%! And I had to drag that out of him. I ended up getting Herceptin from him (because it was close to my house versus Sloan which is not) but interviewed with his colleagues and switched to one of his partners who I think is the best doctor I have ever known.

It would be nice to understand where you stand in relation to your pathology and I think now that we (oncology) are migrating to better tumor markers to have more precise targeted therapy, they could have more precise statistics on pathologies and how those therapies are improving the odds.

Even with adjuvant Herceptin, it has not been used very long (even if you were one of the first women in the trial, it has only been 5.5 yrs) to know if it is a cure or if it just delays recurrence. We just don't have the answers yet to know if all of this improves outcome.

Secondly, with aromatase inhibitors, if you are getting them first line (meaning you did not have 5 yrs of tamoxifen first), are you done at 5 yrs versus if you took tamoxifen (which may not work well for Her2+ women) for 5 yrs then took an AI for 5 yrs. In my local support group, I know of 2 premenopausal women who finished tamoxifen and couldn't go on an AI yet because they were still premenopausal and recurred 2 yrs later (at 7 yrs). Something to be said for this. (They went to my first onc who did not recommend ovarian ablation so they could take an AI - something they should have done). These women were not Her2 (I am the only lucky one in my local group but we do have 2 triple negatives).

I am rambling on in the wrong thread for this but saw you Angel and wanted to respond.

Happy 4th of July

Becky

07-04-2006, 07:26 AM	#3
Becky Senior Member Join Date: Sep 2005 Location: Stockton, NJ Posts: 4,179	I do think that the outcome statistics we read are for all bc lumped together. Those that are Her2+ or triple negative are not looked at separately. This became evident in May, 2005 when the ASCO presentation on adjuvant Herceptin was given. As many of you know by now, I was 3 months from my last chemo at that time (so I was in the initial population of women of whom the NCI and ASCO recommended to be given Herceptin immediately (ie: 6 months or less from the last chemo tx. This was later changed to 12 months from the last chemo tx)). Ironically, I had what was to become my first every 3 month check up so I excitedly discussed the Herceptin news with my (then) oncologist. He promptly told me that I was NOT in the population and that it was 6 months from diagnosis and I was 9 months from diagnosis. After insisting that I did not hear wrong, he still would not listen. I left with a copy of my chart and was able to secure an appointment at Sloan Kettering who told me that they were just starting the program and as long as I had my chemo records to prove when I had chemo, I would receive Herceptin. I called my (then) onc and told him what I was doing (2 days after the diasterous appt). He then said, if I was so adamant, he would give me the Herceptin. It was then we discussed statistics (since adjuvant Herceptin improves those). He told me then that at Stage 2A and Her2+, I had a 67% 5yr disease free chance. That is significantly different than the overall statistic of 88%! And I had to drag that out of him. I ended up getting Herceptin from him (because it was close to my house versus Sloan which is not) but interviewed with his colleagues and switched to one of his partners who I think is the best doctor I have ever known. It would be nice to understand where you stand in relation to your pathology and I think now that we (oncology) are migrating to better tumor markers to have more precise targeted therapy, they could have more precise statistics on pathologies and how those therapies are improving the odds. Even with adjuvant Herceptin, it has not been used very long (even if you were one of the first women in the trial, it has only been 5.5 yrs) to know if it is a cure or if it just delays recurrence. We just don't have the answers yet to know if all of this improves outcome. Secondly, with aromatase inhibitors, if you are getting them first line (meaning you did not have 5 yrs of tamoxifen first), are you done at 5 yrs versus if you took tamoxifen (which may not work well for Her2+ women) for 5 yrs then took an AI for 5 yrs. In my local support group, I know of 2 premenopausal women who finished tamoxifen and couldn't go on an AI yet because they were still premenopausal and recurred 2 yrs later (at 7 yrs). Something to be said for this. (They went to my first onc who did not recommend ovarian ablation so they could take an AI - something they should have done). These women were not Her2 (I am the only lucky one in my local group but we do have 2 triple negatives). I am rambling on in the wrong thread for this but saw you Angel and wanted to respond. Happy 4th of July Becky Last edited by Becky; 07-04-2006 at 07:30 AM..