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Joan M · 02-25-2008, 06:52 PM

Tonya,

I had a similiar experience regarding test results. And it's a good idea to have the test run in another facility.

When I had my mastectomy and immediate reconstruction, I was a ER-/PR- and HER2 3+ by the immunohistochemistry (IHC) test.

Two months later I found a small pea-sized nodule in my reconstructed breast, which was the same cancer. The nodule was removed (it was either something left behind during the mastectomy or seeding from the core biopsy, but I've never had a problem since). The nodule was the same cancer, but it was never tested for ER, PR or HER2.

A year after the nodule was removed, I decided I wanted it tested, just on the chance that it might be ER+, but was surprised when it came back HER2 2+ by IHC (rather than 3+) and then HER2 negative by FISH (many labs automatically test IHC HER2 2+ by FISH, because 2+ is considered inconclusive and FISH is used to make a final determination). The test was done in the same lab.

In the meantime, I had already taken almost a full year's treatment of Herceptin.

I had the original tumor tested again in the same lab and it came back HER2 2+ by IHC (rather than 3+, like the first time), and then negative for FISH.

My oncologist encouraged me to have the original tumor and the nodule retested in a large lab, so I went to Sloane Kettering and they tested the tumors, which came back HER2 2+ by IHC and HER2 positive but borderline (2.0) for FISH.

The oncologist at Sloan, Dr. Seidman, said it was better that I took the Herceptin since I was borderline.

I'm glad that the treatment is clearing up the rash.

Joan

02-25-2008, 06:52 PM	#5
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Tonya, I had a similiar experience regarding test results. And it's a good idea to have the test run in another facility. When I had my mastectomy and immediate reconstruction, I was a ER-/PR- and HER2 3+ by the immunohistochemistry (IHC) test. Two months later I found a small pea-sized nodule in my reconstructed breast, which was the same cancer. The nodule was removed (it was either something left behind during the mastectomy or seeding from the core biopsy, but I've never had a problem since). The nodule was the same cancer, but it was never tested for ER, PR or HER2. A year after the nodule was removed, I decided I wanted it tested, just on the chance that it might be ER+, but was surprised when it came back HER2 2+ by IHC (rather than 3+) and then HER2 negative by FISH (many labs automatically test IHC HER2 2+ by FISH, because 2+ is considered inconclusive and FISH is used to make a final determination). The test was done in the same lab. In the meantime, I had already taken almost a full year's treatment of Herceptin. I had the original tumor tested again in the same lab and it came back HER2 2+ by IHC (rather than 3+, like the first time), and then negative for FISH. My oncologist encouraged me to have the original tumor and the nodule retested in a large lab, so I went to Sloane Kettering and they tested the tumors, which came back HER2 2+ by IHC and HER2 positive but borderline (2.0) for FISH. The oncologist at Sloan, Dr. Seidman, said it was better that I took the Herceptin since I was borderline. I'm glad that the treatment is clearing up the rash. Joan __________________ Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!