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

[Lani]

where they suggested intraductal Herceptin therapy for DCIS!

Just as they are just now separating out the different kinds of breast cancer which each have different behaviors and need different treatments, they are starting to do the same with DCIS and recognizing that(at least some) her2neu+ DCIS with
certain other characteristics are probably just precursors of her2+ bc that you happened to catch early. We certainly live in interesting times! Hopefully these things will be sorted out soon enough for others to be treated differently (and better!) than is often currently the case. As these things are better understood, treatment can only improve.

[Jean]

It is extremely important to pursue and have additonal opinions. As I have always said, this DCIS has been treated as if a woman is a little bit pregnant!
For me my DCIS was invasive and SN was negative, KI-67 levels were extremely high (red flag) yet the dr. also at major NY cancer center insisted on NO treatment..... My mind could not get around their theory.
Thank God for this site and Dr. Slamon...it helped open the doors finally for my
treatment. I just pray each day that the delay in my treatment does not harm me.

Thank you Lani for the post - I hope that other woman in the early stages
pursue their dx. with knowledge and vigor.

Jean

[RobinP]

I believe late Herceptin and chemo has efficacy. The late Herceptin group in the HERA is already demonstrating early signs of benefit, several months out. Well, you got chemo in reasonable timing too, before any reoccurence! Take care.

[mom22girlz]

I tried very hard to get more treatment for my DCIS with microinvasion,
her2+ breast cancer. I got 2 opinion and neither felt chemo or herceptin was necessary. At first the 2nd opinion dr. said i could have herceptin without chemo, but when it came down to it, he said he didn't think I'd reoccur. My first mammo is Nov. 15 and I am sooo nervous. Should I do anything else at this point? My lumpectomy was in February, 2006. Thank you for all your help and support. Susan

[mcgle]

Susan

I know exactly how you feel as I am in the same boat. My first post-op mammo is next Monday. Like you, I am HER2+, but received neither chemo nor herceptin; they were not considered necessary. However, I am worried…<?XML:NAMESPACE PREFIX = O /><O:p< font O:p<>

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1. Are you ER+/PR+? I am, which also came into the equation, as hormone treatment can be used.<O:p< font O:p<>

2. How strongly HER2+ are you? I am weakly positive on the FISH scale (2.71), but positive nonetheless.<O:p< font O:p<>

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[mom22girlz]

My FISH was 6.41. The onc said this was high. I don't really know what that means because he also said if you're positive, you're positive. Do you have any plans to check into something else? I am ER/PR + so I now take tamoxifen. Thank you so much for your reply. It is nice to know there are others who feel the same way. Let me know if you have any new information. Sincerely, Susan

[RobinP]

I believe that I've read that only invasive breast cancer of 2mm or more can form blood vessels to spread. Under 2mm, such as in pure microinvasion, theorectically shouldn't be able to spread. I must stress PURE micro-invasion here. I think that rare cases of microinvasive relapse occurs when something is missed in pathology that is more than a micro invasive or when there is an unusal drop mets in surgery. Did you have any lymphatic/vascular invasion?- LVI? Did you have a sentinel node dissection to check for spread as that would be another indicator for relapse risk. If you had a positive node or LVI, you may consider late Hercepetin.Good luck.

WARNKING- double check your pathology. Remember I was misdiagnosed three times by pathologists!!! Twice locally in Elmira, NY's XXXXX's path lab and once by a pathologist at the PRESTIOUS major cancer center in NY city,XXXXX-Kettering. Shocker, isn't it?

[Mary Anne in TX]

Hey Lani and Robin....Thanks for continuing to "rattle the cages" in some needed areas! I am so grateful that my onc has been an "overachiever" in every way...treatment, concern, double checking, & sending me to the very best surgeon, radiation onc., radiologist, etc. One of my 2 adopted sisters found him for me and then called to be sure they accepted me when I called them the next morning! God is so good when we are so weak! ma

[RobinP]

for T1 cancers where traditionally prognosis is good:

http://www.annalssurgicaloncology.or...t/11/6/568.pdf

http://clincancerres.aacrjournals.or...act/12/22/6696

PS The above studies are interesting because they have lont-term follow-up of 8 and 15 years.

And a divergent opinion, where LVI positivity had more importance, in a SMALL study of 8 year follow-up: (PS not sure I give this same study much stock , especially since the decision of adj. therapy may be a life-saving one.)
http://www.blackwell-synergy.com/doi...X.2006.00267.x

To sum it up, overall, micromets and ITC in the sentinel appears to have a play in long-term relapse, and adjuvant therapy may have a role in relapse prevention.

Adj. tx. guidelines are for t1a lesions are aggressive, even without positive lymph node because, "Patients with high-grade tumors and/or LVI may have10-year RFS rates of less than 75% in the absence of systemictherapy. "...

http://jco.ascopubs.org/cgi/content/abstract/24/13/2113

[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.