Has anyone had a her2neu positive recurrence after initally being her2neu negative??

[cath_ob]

Hello...I'm new here.

I wanted to know if anyone had a her2neu positive recurrence after initally being her2neu negative??

My original breast tumor tested ER/PR postive and her2neu negative by IHC. NO FISH was done.

The tests were done at MD Anderson. Apparently they do not do a FISH test unless IHC is 1 or more. hmmmmm.

I had FAC and Taxol and finished chemo in 12/05. Then had radiation and started Tamoxifen

Just found out I have advanced mets to bone, liver and lung.

I am demanding a liver biopsy to retest the tumor to ensure it still has the same features.

Per several oncologists...no one seems to see people with tumors that change to her2neu positive.

Has this happened to anyone here?

Thanks for any responses.

Cathy

[Bev]

Cathy, Just posting to keep this alive. I do seem to remember people having their pathology change with recurrence, so yes I think it's possible. Good luck, BB

[Becky]

This happened to Tricia K.

[cath_ob]

Can you tell me more about Tricia K's story?

[RhondaH]

here are some posts you should read.

http://www.her2support.org/vbulletin/showthread.php?t=21771&highlight=her-+her2

http://www.her2support.org/vbulletin/showthread.php?t=19492&highlight=her2-+her2

http://www.her2support.org/vbulletin/showthread.php?t=19874&highlight=her2-+her2

Rhonda

[MichelleMoon]

YES, YES, get the mets boipsed! My original tumor was HER2- (IHC), but my lung mets tested by FISH were HER2+. It opens up Herceptin and hopefully Tykerb as treatment options!

[cath_ob]

That was a really helpful link...felt like they were talking about me.

[Lani]

Carney WP. HER2 status is an important biomarker in guiding personalized HER2 therapy. Personalized Medicine, 2005. Vol. 2, No. 4, Pages 317-324
ABSTRACTThe human epidermal growth factor receptor (HER)2 oncoprotein has emerged as an important cellular target for the development of a variety of new cancer therapies. The method used to define the HER2 status is a major factor in determining who will receive these targeted therapies. The HER2 status can be determined by using either tissue tests to look at the primary tumor cells, or an enzyme-linked immunosorbent assay (ELISA) that measures the circulating levels of the extracellular portion of HER2 protein. Tissue test (immunohistochemistry and fluorescence in situ hybridization) results indicate that approximately 20–30% of patients with primary breast cancer have a HER2-positive tumor, whereas ELISA results demonstrate that an average of 45% (range: 23–80%) of metastatic breast cancer (MBC) patients can have an abnormally high (> 15 ng/ml) serum HER2 level, which is evidence that a HER2-positive tumor is present. Published studies show that the HER2 status of a breast cancer patient can differ both by the test method used and the time at which HER2 status is assessed. In this review, data will be shown that demonstrates that not all HER2 test results obtained from the primary breast cancer are correct, and that there is a population of patients categorized as HER2 negative by tissue tests that, in fact, have HER2-positive tumors. This observation has important therapeutic implications for breast cancer patients with HER2-positive tumors that are classified as HER2 negative, since they are not eligible for anti-HER2 therapy, such as trastuzumab. If a patient is found to have an elevated (> 15 ng/ml) serum HER2 level in MBC, then either the original tumor should be re-evaluated for HER2 status, or a metastatic lesion should be tested for HER2 positivity, to determine if the patient is eligible for anti-HER2 therapy. Studies have also shown that lack of adequate validation of a testing method can result in false conclusions concerning the HER2 status. If the goal of personalized medicine is to deliver the right treatment to the right patient at the right time then we need to ensure the validity of all test methods, regardless of whether they are for research purposes or are registered as in vitro diagnostics. In the case of establishing HER2 status, it takes more than one type of test to identify patients with HER2-positive tumors. It is highly likely that the introduction of additional targeted drugs to growth factor receptors or to angiogenesis targets will take a variety and combinations of tests to tailor the most appropriate therapy to the patient.

[Joy]

Hi, 7 years ago when I had my breast tumor tested they were only doing the IHC at our facility. I came back with a 1+ and was deemed as Her2 negative. When I had a wicked recurrence 2 years later, bad liver mets, I began chemo and saw a BC specialist who said that he felt that I was really Her2 positive because the cancer was so aggressive (it was a grade 3 tumor too). the specialist suggested having the same tissue tested with FiSH as he guessed it would come back positive. At that time he said that approximately 7% of women who were tested with IHC and her2 neg would prove to be Her2 positive with the FiSH. I had my tissue rechecked and I was HER2 +++. I remember when the onc NP gave me that result (this was in '02) she said, "You are not the first woman this has happened to."

So between tests there are variations and between tumors there are variations. I myself am thinking of a liver met biopsy becasue I want to know if those mets are still er/pr and her2+ as my original tissue was. It does seem, though, that more often neg proves to be positive rather than positive turning negative so I'm not sure if it is worth it in my case. If you are up for a biopsy, I would definitely do it. More things can be tested for than they could even just a few years ago and there are more treatments available based on tests too.

i like the idea of going to the mets and getting as much info as possible early in the MBC journey. My thoughts being that you can tailor treatments better, cutting down on ineffective treatments which in turn can keep a person from being "heavily pre-treated" for longer which then keeps you more eligible for more trials. Many heavily pre-treated gals get excluded from trials-there are still plenty for us, but I think it is nice to get the treatment that will really work for YOU and not dink around with side effects and ineffective nonsense, if possible.

just some thought cathy-keep us posted, okay?

[cath_ob]

wow. That's incredible. Thanks for sharing. I am having a liver biopsy on wednesday and have already asked for my original tumor to be sent for FISH.


Cathy