for Jean, Robin P and all those who started with DCIS with microinvasion (recognized

[Jean]

Thanks Grace, always good to have a referral.
Dr. Slamon had referred me to an onc. that had worked on the Hera Trials
and he has been wonderful working along side Dr. Slamon during my chemo/herceptin treatment.

At the time of my dx. 4/05 the bible in NY at Sloan, Cornell and Mt. Sini was tumor size, grade, (my was 1) ...each time I mentioned about the Her2 portion of my dx. the dr. did not consider it was the most important part of my dx. esp. since I was ER postive...feeling that hormonal therapy
was my ticket along with radiation. But after reading and searching articles I just could not believe them. I kept hearing how many woman were node neg. and having recurrance. Which alerted me to search into the questions can a cell pass through and / or get through the blood system undetected? Can that happen more often than not. Please know that the dr. (onc's) that I saw are considered to be top men in their field. I discovered at that time 4/05 that the dr. in NY did not even recognize the Oncotype DX test (now it is used at Sloan) Timing is everything.
Early bc was and still is for the most a major controversy as far as treatment decisions, esp. when node negative along with the small tumor low grade. When I would mention information I would gather from our site one onc. answered "well it just is not the gold standard of treatment".
I began to wonder if they were more concerned about law suits regarding treatments outside the box. My tumor was 6mm after biopsey 3mm - the invasive portion was under 2mm and the margains were 25mm...but I still did not feel satisfied - considering the Her2. I would also like to share one onc. even told me how dangerous herceptin is to the heart and how dangerous it was, which upset my husband to a great degree. It was only after I insisted through my surgeon to have the Oncotype DX test performed - when that came back high risk the onc's then changed
their opinion. They wanted to give me A/C..at this point I made an appointment to see Dr. Slamon I had lost all trust. Now by this time there had been published articles from Dr. Slamon regarding TCH...but that was not mentioned either. Now when I saw Dr. Slamon he immediately said hemo/herceptin, even if I did not have the Oncotype DX test. He said my KI-67 level was enough to make the decision. So the grade, tumor size, etc. was not the only factor. I promote having more than one opinon (in my case I had three in NY) they all said the same, but later changed their dx. Goes to show and teach to be our own advocate. It was a learning experience for me, I was very innocent in the early days of dx. I thought or at best was under the silly impression that standard of care meant that the major hospital had the same treatment protacal for breast cancer. In those early days for the most part you are in a state of fear. Thank God for Joe and Christine and this site. I can not emphasize and praise enough the value of this site. The woman and men who share their knowledge and experiences always giving 200% of themselves. Christine
never gave up as we discussed my dx. and she insisted the dr. were wrong. At the time of my dx. it was timing and I think there was a shift in treatment here in NY. I just wish that more money was being spent on research for this dreaded disease. Trials take so long and many promising medicnes are not getting out of the lab. In the meantime we must do all we can to maintain a strong immune system, continue to study and learn all we can.


Jean

[Jean]

As I mentioned earlier - in the early days you are filled with fear.

I found this beautiful quote after I returned back from Calif. seeing
Dr. Slamon....and it said it all.

"You gain strength, courage, and confidence by every experience in which your really stop to look fear in the face. You must do the thing which you think you cannot do"

by Eleanor Roosevelet

Jean

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.