HER2 Support Group Forums - View Single Post - for Jean, Robin P and all those who started with DCIS with microinvasion (recognized

07-09-2007, 10:58 PM

Thanks Jean. It's interesting as we have exactly opposite stories. My cancer was 5mm and I felt that everyone was being too aggressive. I believe I have the largest margins in the history of breast cancer--the largest was 5cm and the smallest was 2cm. I was very angry at my surgeon because she wanted to do more than a SLN if she saw anything strange and I refused. I'm actually happy these days that she did leave such large margins, although maybe if I were younger I might feel differently. I am a bit lopsided.

And because just about everyone in my family has died of a heart condition (no one ever lived long enough to get cancer) I was very very concerned about taking herceptin. So I was the one kicking and screaming about my heart. My oncologist kept saying but you have a HER2+ cancer. However, he wasn't pushy when he saw me resisting; he let me come to my own decisions. But he's not at any of the hospitals you mentioned--he's at NYU, and I've been delighted with my care there in all respects. Love the nurses, the private rooms for chemo, mine is with a window seat, the gowns, the dressing rooms, the efficiency of the administration, everything. Can't recommend it too highly.

Dr. Volm even wanted me to get a second opinion and suggested Sloan, but I refused. I found he was reading Michael Dibdin's "Dead Lagoon," my favorite writer of Italian mysteries and my favorite mystery, so decided we were compatible and made my decision right then that he was the doctor for me. (I should say, I suppose, that I had read 700+ technical articles and abstracts on HER2+ breast cancer before my first visit so I did understand somewhat the issues involved.) I often make major decisions in this silly way--an instinct, I suppose, but thank goodness, this one (and marrying my husband) worked out beautifully for me.

I have a good friend who always insists on using the "Best Doctors" list and she's had the most horrific experiences. She's in despair at the moment because of a botched knee replacement by a 'best doctor." I keep telling her, throw the list away--most of the people who get on those lists are marketing experts not best doctors. Ask family and friends for referrals. And it sounds from your story that I'm right about those lists.

Sorry you had such a bad experience. I wish you had happened on Dr. Volm--you would have loved him. But I'm glad in the end you found a good medical team. It's very important, I believe, to trust your doctor and to leave when they don't make you comfortable. I changed my breast surgeon after surgery and am delighted with my new doctor, although I may have been a bit hard on the earlier one. But this is a learning process for sure.

07-09-2007, 10:58 PM	#20
Grace Guest Posts: n/a	Thanks Jean. It's interesting as we have exactly opposite stories. My cancer was 5mm and I felt that everyone was being too aggressive. I believe I have the largest margins in the history of breast cancer--the largest was 5cm and the smallest was 2cm. I was very angry at my surgeon because she wanted to do more than a SLN if she saw anything strange and I refused. I'm actually happy these days that she did leave such large margins, although maybe if I were younger I might feel differently. I am a bit lopsided. And because just about everyone in my family has died of a heart condition (no one ever lived long enough to get cancer) I was very very concerned about taking herceptin. So I was the one kicking and screaming about my heart. My oncologist kept saying but you have a HER2+ cancer. However, he wasn't pushy when he saw me resisting; he let me come to my own decisions. But he's not at any of the hospitals you mentioned--he's at NYU, and I've been delighted with my care there in all respects. Love the nurses, the private rooms for chemo, mine is with a window seat, the gowns, the dressing rooms, the efficiency of the administration, everything. Can't recommend it too highly. Dr. Volm even wanted me to get a second opinion and suggested Sloan, but I refused. I found he was reading Michael Dibdin's "Dead Lagoon," my favorite writer of Italian mysteries and my favorite mystery, so decided we were compatible and made my decision right then that he was the doctor for me. (I should say, I suppose, that I had read 700+ technical articles and abstracts on HER2+ breast cancer before my first visit so I did understand somewhat the issues involved.) I often make major decisions in this silly way--an instinct, I suppose, but thank goodness, this one (and marrying my husband) worked out beautifully for me. I have a good friend who always insists on using the "Best Doctors" list and she's had the most horrific experiences. She's in despair at the moment because of a botched knee replacement by a 'best doctor." I keep telling her, throw the list away--most of the people who get on those lists are marketing experts not best doctors. Ask family and friends for referrals. And it sounds from your story that I'm right about those lists. Sorry you had such a bad experience. I wish you had happened on Dr. Volm--you would have loved him. But I'm glad in the end you found a good medical team. It's very important, I believe, to trust your doctor and to leave when they don't make you comfortable. I changed my breast surgeon after surgery and am delighted with my new doctor, although I may have been a bit hard on the earlier one. But this is a learning process for sure.