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Old 03-06-2009, 10:20 AM   #21
Debbie L.
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PS: techy question

Unregistered, how'd you do that cool quote box?

Debbie, again
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Old 03-06-2009, 10:29 AM   #22
Ellie F
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Hi all, rang NICE today for clarity after reading possible different interpretation of guidance. Just to confirm that the last post from unregistered guest was accurate.Wonder whether withdrawing treatment from a patient that it is working for would be a breach of human rights?Maybe someone will test this out through the High Court
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Old 03-06-2009, 10:35 AM   #23
Lani
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there are many paper which show improved survival by continuing

herceptin in those with brain mets (I think I have posted 3 here by the way so use that search function in the yellow bar above) to use as ammunition . I think they were thinking if they eventually approved tykerb, they didn't want the double whammy of having some patients on herceptin and tykerb ($$$$$)
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Old 03-06-2009, 10:36 AM   #24
Lani
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We may never find out prospectively (maybe retrospectively) how many low grade tumors

are her2 + if this articles recommendations are adopted:
ABSTRACT: HER2 in well differentiated breast cancer: is testing necessary?
[Breast Cancer Research and Treatment]
Background: In addition to providing a timely and accurate diagnosis, pathologists routinely provide prognostic and predictive information to assist in the treatment of patients with invasive breast cancer. As our understanding of breast cancer at the molecular and genetic level improves, sophisticated new treatment options have become available to patients. The demonstrated improvements in disease-free and overall survival with the use of trastuzumab (Herceptin) has made HER2 testing a standard of care in the evaluation of patients with breast cancer. Specialized breast centers have accumulated sufficient experience to recognize that HER2 positive tumors tend to be of higher grade and to be estrogen receptor negative, whereas well-differentiated breast cancers rarely are HER2 positive.
Methods: To determine whether HER2 testing is necessary in well-differentiated breast cancer, we analyzed the frequency of HER2 positivity among 1,162 cases from 7 major breast centers or commercial laboratories in the United States and Europe.
Results: Well-differentiated breast cancers, defined by either nuclear grading or the Scarff-Bloom-Richardson system, rarely are HER2 positive (mean 1.6%, range 0-2.8%).
Conclusions: Given the low rate of well differentiated HER2 positive tumors, falling within the range reported for false negative IHC tests for HER2, and the absence of published data demonstrating a beneficial effect of trastuzumab therapy in this subset of patients, HER2 testing should not be considered a standard of care for all patients with well-differentiated breast cancer.
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Old 03-06-2009, 11:26 AM   #25
Jean
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Thank you Debbie and Lani...

Thank you both for the thought provoking information.

“Not about small tumors so much as it is about low grade.”

I agree Debbie that it is strange; I had a grade 1 tumor, highly differentiated and was ER+ 90% and score by FISH 15, 3mm after biopsy.

I was informed I had a good prognosis..now let’s realize this was back in 05…but yet there was research and information suggesting otherwise.

What is most strange today…as you mention there is not enough information or research in this area? I have been trying to find some information but have not been successful.

As you mention Debbie low grade small tumors are hard to find. We desperately need much research in the area of individual testing for each woman’s tumor and its own genetic makeup to make the best treatment choices.


Results: Well-differentiated breast cancers, defined by either nuclear grading or the Scarff-Bloom-Richardson system, rarely are HER2 positive (mean 1.6%, range 0-2.8%).
Conclusions: Given the low rate of well differentiated HER2 positive tumors, falling within the range reported for false negative IHC tests for HER2, and the absence of published data demonstrating a beneficial effect of trastuzumab therapy in this subset of patients, HER2 testing should not be considered a standard of care for all patients with well-differentiated breast cancer.


This is very concerning to read that HER2 testing should not be considered a standard of care for all patients with well differentiated breast cancer along with studies that are performed that do not prove statistical significance to draw conclusions on.

The controversy continues I have to wonder when will these types of studies begin to happen? They certainly have the details of grade, er/pr status, etc.

Lani, have you heard of any such studies underway?
It is weird, strange and disturbing.



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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 03-06-2009, 03:43 PM   #26
RobinP
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http://her2support.org/vbulletin/showthread.php?t=37140
OLD NEWS REPEATED
After the 2005 HERA trial presentation at the SABC, I reported here that node negative her2+, er-, pr- breast cancer had a high risk of relapse in the first few years, I think it was 18%. BECAUSE OF THAT, I GOT LATE HERCEPTIN. For anyone interested, I brought up the risk of relapse in small her2+ tumors in Dec. 2008 when the abstracts from the SABC came out. The link above addresses one of those major studies, in which Medscape and other MDs are making their claims about EARLY STAGE her2+ PROGNOSIS. The survival stats for T1a and T1b look worse than other bc subtypes. AT the same time, the t1a and t1b are not evaluated individually for prognosis and only 25% were T1a and 75% were t1b. If t1a had a better prognosis than t1b, you'd never to able to tell the way the study was set up. So to be picky here, no study has really adequately evaluated the prognosis of the earliest stage of her2+ bc, T1a lesions. Having said all of this, I am still glad I got Herceptin, as it is a gray zone of question.

The other interesting thing to note is that according to Dr. Piccart of the HERA trial, not all her2 is the same and some inherently have a better prognosis than others, as this was recently discovered via the 70 gene signature.
Part of Abstract from BCRF WEBSITE on DR Piccart-
"Until now, it was thought that all HER-2 positive breast cancer patients needed adjuvant chemotherapy in addition to adjuvant trastuzumab and adjuvant endocrine therapy (if the hormonal receptors are positive). However, recent data seem to show that this population is quite heterogeneous. Using the 70-gene signature, for example, a significant proportion of women with HER-2 positive disease are predicted to have a low risk of recurrence. Hence, it may also be possible to safely spare these patients adjuvant chemotherapy, if these results are confirmed.
With the support of BCRF, the purpose of this study is to confirm that HER-2 positive breast cancer is heterogeneous and can be sub-divided into two subgroups with different prognosis as defined by the 70-gene signature, and can therefore be treated differently. The second step will be to characterize in detail the biology of these subgroups, using different available technologies, to better define the best treatment strategy for each."

Now don't you all feel a little better about her2+, knowing what Dr. Piccart stated? I hope so and as Becky always says, let's look at the bright side of things. Have a good weekend folks and drink some green tea, calming to the nerves and good for down regulating her2.
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Old 03-07-2009, 12:49 PM   #27
CLTann
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The report is very alarming for those who elected not to have chemo, thus no herception, but fall in the HER2 positive group. I couldn't find any mention of using A.I. as a deterrent for recurrence for those without herception. Most women would have elected to add A.I. and biphosphonate as treating agents. Please post a reply if I missed this point.
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Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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Old 03-09-2009, 10:50 AM   #28
RobinP
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An AI would not help a hormonal negative, Tann. Alaska Angel and others were ones without Herceptin, as many were diagnosed before it was approved in 2005. AA. is still NED and doing well, as far as I know, several years out.
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2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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Old 03-09-2009, 01:33 PM   #29
AlaskaAngel
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Red face

Hi Robin and CL,

Still NED here. No symptoms other than the pesky right lower chest sensations I've had since just after treatment in 2002, which have been imaged 3 times over the years by CT and many more by ultrasound without finding anything but minor hemangiomata. I just had labs (but no imaging other than a November mammo that was clear), and the labs show my CA15-3 has dropped from low to lower. No Herceptin, and I just finally had my port removed last November. I also have only taken 2 days total of an AI several years ago, but did take tamoxifen for 1 year at full dose and then 3/4 year at half dose, stopping entirely because of the possibility that tamoxifen can contribute to recurrence for some HER2's.

Anyone is welcome to think I'm crazy, but one possibility that I think is genuine is that my tumor was encapsulated by fibrous tissue that may have been provoked into being constructed by the immune system.

Another idea that is possible is that having CAFx6 plus rads and such limited time on tamoxifen was enough to keep me in remission.

Another idea is that cancer may in fact be spreading but I just don't know it yet. I did have one brain MRI several years ago when I had vertigo and it was benign.

Another idea is that diet (avoiding simple sugars, eating organic, etc., trying for normal BMI) and attempts at exercise are slowing any cancer buggers down.

Quien sabe?

Much affection,

A.A.
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Old 03-18-2009, 10:53 AM   #30
RobinP
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Dear AA.

Good to hear you are still doing well. Yes, I agree that a low fat, low carb diet with plenty of antioxidants, and her2 down-regulators like olive oil, green tea, black tea, curcumin, vitamin D, and others helps prevent a relapse. Exercise and a normal BMI also helps fight the bugger. According to the data, relapse risk is lower after five years and is not bad at about a 7 risk for early stage her2+. Considering any adjuvant tx. one may have had makes that risk even lower outside the CNS. Smile, Robin
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2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo

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