HER2 Support Group Forums

Hi All,
Huge thank you for your so very kind posts.
All put a big smile on my face and some tears (happy)
also. I never forget for one moment how fortunate I am am and so glad that I fought hard to get herceptin.

lasarles: The reason for my delay in herceptin/chemo was that back in 2005 it was not standard of care or what we call protocol. I had decided to have the Onco DX test done because my instincts were shouting at me. Once I began to do my homework on Her2 I could not understand why an early stage patient was not permitted that treatment. So I went to 2nd, 3rd and yes even 4 opinions. All said that herceptin was only for later stage patients. I then thought the Onco test would be wise to glean more information on my tumor.
That test was also new at that time. The test came back with a high recurrence. With that knowledge I then called Dr. Slamon in Calif. and the wonderful man said he would see me. So I flew out to Santa Monica to his office and Dr. Slamon advised that he do a TOPO2 test, since he said that depending on that test A/C chemo
would not benefit me if I were TOPO 2. Also, at that time Dr. Salmon had just completed the trials for TCH treatment. The results had not been published and he explained to me how exciting this new and outstanding treatment would be for the patient and the treating dr. So, depending on my TOPO2 test that would be a deciding factor for my treatment. It turned out that TCH was the best treatment for me and today is for the most part the standard of care. Back then this was cutting edge. Dr. Salmon was way ahead at the time and his exact words, which I will never forget, were "the other doctors are wrong, you must have herceptin, I wish more women would question their dx." It was such a relief for me - because can you imagine what it was like then to continue to see top doctors and then continue to question them? I had one dr. say to me that I was not accepting my breast cancer dx. Well, yea in a way she was correct. I was not accepting that there was not more I could do to save my life. I even had close friends think I was losing my senses by not listening to the first 4 top dr. That I was obsessed with my breast cancer dx. I realized they did not understand the difference - that new cutting edge tests, treatments were out there and maybe I really needed them.
It took great strength and giving in to people saying negative things to me about my continuous searching. I had people tell me to stay off the internet, stop reading about breast cancer, sounds so silly doesn't it. But you have to realize so much has changed in just short 8 years in so many ways.
So yes, it took 10 months and flying out to Dr. Salmon to arrive where I needed to be. Of course I found this Her2 site and that only gave me more strength and knowledge. I will never forget Becky who was the first to reach out to me and our friendship began that moment. Dear sweet Sheila, who encouraged me to fight back (she was stage 1 and had progressed) who became my second new Her2 friend and sister. Our founder Christine even called me to say don't give up fight for herceptin. Susan
who like me, was an early stager and was also treated.
My heart breaks for those that are no longer with us. These past 8 years are bitter sweet.

I will share this also, at the time Onco DX was new as I mentioned. I had requested and told my breast surgeon to send a sample of my tumor out for the OncoDX test. Well, I called two weeks later only to be told by his nurse, oh the dr. decided not to send the sample as he does not believe in the test and besides your insurance will not pay for it. I was furious that a doctor would not follow his patients request. So it took another few weeks just to get that test done. When the results came back he was shocked it was so high.

Another point that I was trying to make at the time was that having a small tumor matters not when it comes to breast cancer...much like being a little pregnant. I had asked another dr. how many cells are there in a small tumor like mine. His answer was millions. When I heard that I knew while catching the cancer in the earliest stage is good, it is still a serious disease. The doctors were sort of blowing me off since my tumor was small. Her2 didn't seem to matter very much to them. Again, Dr. Salmon agreed that having Her2 in a small tumor was serious as it loves to travel. So, I am a strange one in that I had my treatment later and radiation first.

Susan, lol - you are not kidding when you said, "the back door ...you made me laugh so hard!"

Tricia - You keep bringing up the rear!!!

Laurel - 5 is a big milestone I will be cheering for you.

Nancy Dip - Big thanks for calling me OLD timer I love it.

Becky - :) you make me smile, thank you for your friendship and love all these years.

Dear newer members, it is a long and often scarey walk
on this breast cancer journey, just fight back hard and never give up. Come often to the site and you will always have your sister here to support you and give you the courage or just kindness when others just don't understand what you are feeling. We have all walked the journey so we "get it" and understand.

Love to all,
Jean