HER2 Support Group Forums - View Single Post - Stage I ER/PR+ Her 2+ No node involvement

AlaskaAngel · 09-01-2006, 11:27 AM

I think is mostly a question of how much risk you are willing to handle.

Dianaq, I feel we have a good deal in common. 1.6 cm IDC, high-grade, some DCIS, clear lymph nodes, no LVI, HER2+++, ER+, PR+. I don't have any info on other characteristics of my tumor so far. I'm NED after CAF x 6, rads, and 1 3/4 years on tamoxifen.

When I was diagnosed in 2002 at age 51 I knew nothing about clinical trials or about the Herceptin trials that had already been started. I told my onc I was interested in participating in clinical trials. I should have realized how limited his help would be when he only replied that "there are thousands of clinical trials". If he didn't have the foresight at that time to consider off-label Herceptin to be a reasonable choice for me to consider, at the very least he could have said "You can look at various clinical trials at clinicaltrials.gov"; but that would have taken more thoughtfulness on his part.

At diagnosis, following lumpectomy I asked my onc about the possible option of having rads plus having my ovaries removed and doing hormonal therapy. He did not provide any statistics on choices or any discussion and only said that it was not quite as good as chemo plus rads plus hormonal therapy. The guy was just not into a partnership relationship or teaching or being straightforward with me.

Chemotherapy takes a chunk of time to have and much longer to recover from, and speaking only for myself, my WBC still has never recovered and the struggle to lose weight and avoid gaining weight is now a much greater struggle for me. A part of my personality was wiped out, the part that is called libido. It doesn't just affect sex life; the loss is much, much broader than that.

At any rate, you have the advantage of Herceptin as an option at time of diagnosis that I did not have. In addition you have the potential advantage of either a SERM or an AI like I have had.

Unfortunately the wonders of chemotherapy have been far more thoroughly researched than more simple and less toxic therapies. I wish you the best with your decision.

AlaskaAngel

09-01-2006, 11:27 AM	#33
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	Uncertainties I think is mostly a question of how much risk you are willing to handle. Dianaq, I feel we have a good deal in common. 1.6 cm IDC, high-grade, some DCIS, clear lymph nodes, no LVI, HER2+++, ER+, PR+. I don't have any info on other characteristics of my tumor so far. I'm NED after CAF x 6, rads, and 1 3/4 years on tamoxifen. When I was diagnosed in 2002 at age 51 I knew nothing about clinical trials or about the Herceptin trials that had already been started. I told my onc I was interested in participating in clinical trials. I should have realized how limited his help would be when he only replied that "there are thousands of clinical trials". If he didn't have the foresight at that time to consider off-label Herceptin to be a reasonable choice for me to consider, at the very least he could have said "You can look at various clinical trials at clinicaltrials.gov"; but that would have taken more thoughtfulness on his part. At diagnosis, following lumpectomy I asked my onc about the possible option of having rads plus having my ovaries removed and doing hormonal therapy. He did not provide any statistics on choices or any discussion and only said that it was not quite as good as chemo plus rads plus hormonal therapy. The guy was just not into a partnership relationship or teaching or being straightforward with me. Chemotherapy takes a chunk of time to have and much longer to recover from, and speaking only for myself, my WBC still has never recovered and the struggle to lose weight and avoid gaining weight is now a much greater struggle for me. A part of my personality was wiped out, the part that is called libido. It doesn't just affect sex life; the loss is much, much broader than that. At any rate, you have the advantage of Herceptin as an option at time of diagnosis that I did not have. In addition you have the potential advantage of either a SERM or an AI like I have had. Unfortunately the wonders of chemotherapy have been far more thoroughly researched than more simple and less toxic therapies. I wish you the best with your decision. AlaskaAngel