HER2 Second opinion pathology test: same slides or new biopsy?

SccS, I am assuming that the 2012 re-test was a "new" FISH analysis of the slides that had been prepared (but not analysed) in 2009, is that correct? If the 2012 re-test was simply looking at slides that had been analysed three years earlier, the fluorscent signal would have had faded over that time.

Errors in the FISH test are most likely to come from errors in the tricky FISH process itself, not the prior preparation of the slide (which is pretty basic) or in the scoring of the slide as negative or positive (which should be very clear).

Keeping in mind that Her2 status can change over time, you can have them make some extra back-up slides. If the next test is Her2 positive, you won't need them. If it is negative, you can send the back-up slides to another lab for a complete new FISH analysis.

Best wishes to your wife!

Simple answer, no. I can't see that happening. Slide prep is a basic procedure, done the same way for decades. It's the FISH analysis itself that is more delicate.

Don't think about a second biopsy right now. Just get through this one. One step at a time.

The current hospital disagreed with another hospital on HER2 status of 2009. We don't know what the first hospital would have found in 2012.

Questioning whether lab results are reliable for big treatment decisions is a legitimate question. HER2 is known to change between primary and metastatic tumors. The issue of where these changes were real or lab error was looked at in this study. It found that local labs (in the hospital) had a higher rate of HER2 changes between primary to metastatic tumors (16%) than central labs (3%). Even more interesting, the central labs found only changes negative-to-positive, but local labs found them both directions, evenly split.

This raises the question of whether your hospital's HER2 tests were done in-house or by a central lab. If it is local, you could get the hospital to use a specialist lab with more experience.If they were done by a central lab, then (a) it is probably more reliable and (b) the next hospital might be using the same lab anyway.

Changing hospital's means delay in diagnosis and treatment, and you are going into an unknown. Were you otherwise happy with the hospital and your wife's oncologists? Do you feel comfortable asking them questions? I know that oncologists are swamped with work, but you should expect that they take your concerns seriously, whatever they may be. You will never know for sure if the lab was right in 2012, but you know how the hospital treated you through your wife's last ordeal.

In our messed up world, that is good news! If your going to have a met, make it HER2+. Thank you Dr Slamon, for giving us a weapon to fight this beast!

Herceptin (trastuzumab -- the ab means antibody) is an antibody against HER2. Kadcyla (trastuzumab emtansine) is the antibody with a chemo drug attached to it.

Kadcyla is an IV infusion every 3 weeks, just like Herceptin. It is given with antihistamines as premeds. I also have blood tests between infusions and a check of my heart every 3 months.

For me, the main side effect was fatigue in the weeks after each infusion, but that got slowly better over time. I was just so weak after my brain surgery that anything more was hard to take, but I was active as much as I was comfortable with, no pushing it, and I was able to slowly regain strength and find my own new level of activity.

Regarding legal action, I don't see the case. The 2009 slides were retested, so the question about the negative HER2 test was indeed followed up. Herceptin has its own risks (mainly heart failure) so it cannot be given without good reason. In 2012, HER2 was not shown on the current tumor, so the decision not to give Herceptin was reasonable, given the information available at the time.

Many of us with mets can look back at medical blunders that might have kept us out of the hole we are in. I would guess that there are more than we even know, never mind all the uncounted poisons in our air, food, and water. But that's our world and that's the way it is. I am just happy that we do live in a time of modern medicine -- and no more witch burning! Life's a bitch. Life is glorious. Let's enjoy every minute!