In my first post, “Lung Cancer: What I Wish I’d Known in the First 72 Hours,” I said I wished I had known to ask the doctor to take extra tissue in the initial biopsy. It might have helped me avoid having two more biopsies in the next eight months.
I probably would have had the second biopsy anyway. My lungs had one substantial mass, and several patchy areas. After the first couple of rounds of chemo, my oncologist at Rutgers Cancer Institute of New Jersey became concerned that not only were my lungs not looking better on a CT scan, the patchy areas might actually be a little worse.
One of the questions was whether the patchy areas were even cancer. We knew that the mass was cancer because that was the area they biopsied the first time, but the patchy areas looked different enough from the mass that they could have been something else. My bronchoscopy results had included one weird finding, an unusual bacteria. I might have an infection, or I might simply be a carrier of something. The fact that the chemo didn’t seem to be having any effect on the patchy areas contributed to my oncologist’s concern.
Meanwhile, there had been enough tissue from my first biopsy, at a community hospital, to test for the three most common genetic mutations in adenocarcinoma: EGFR, ALK, and KRAS. I was negative for all three. All three of my oncologists had mentioned ROS1, and there was also a possibility I might be eligible for a Foundation Medicine study that would test my cancer cells for all other known mutations. However, there wasn’t enough tissue left for any additional mutation testing beyond the “big three.”
This was probably the most confusing moment in coordinating care between three centers PLUS the community hospital where I’d had my first biopsy. Bits of information went astray in the five-way communication (three cancer centers, one community hospital, and me, the patient). For a while, I actually thought the additional testing was underway when it wasn’t. I didn’t realize all the tissue from my first biopsy had been used up. Always ask ALL your doctors ALL the questions!
My oncologist at Memorial Sloan-Kettering agreed that we should biopsy the patchy areas, and the second biopsy might have the added benefit of giving us more tissue for further mutation testing. I decided to have this biopsy done at Memorial Sloan-Kettering because of all the centers where I was being seen, they had the most direct access to the widest variety of tests — and I knew they would keep track of my tissue and keep me posted if it got depleted! So I had a second biopsy in March 2013.
Unfortunately, because the patchy areas were, well, patchy, there weren’t enough cancer cells for extra testing from the second biopsy, either. They got enough cells to determine that yes, in fact, the patchy areas were also cancer, just like the mass, and the bacteria was probably a red herring and not important, but there weren’t enough cells left over to learn anything else.
Although my CT scans continued to look more or less the same every time, on chemo I was feeling incrementally better. My oncologist switched me from carboplatin, Taxol, and Avastin to pemetrexed (Alimta), and again there was no substantive change in the CT scans – they kept looking perhaps marginally worse, definitely no better – but my symptoms kept improving, bit by bit. ROS1 or some other genetic mutation seemed like such a remote possibility, and another biopsy seemed so invasive, that we decided to wait until there was a good reason to do a third biopsy, and not do a third biopsy just to get tissue for testing.
I ended up having a third biopsy in July 2013, again at Memorial Sloan-Kettering. This was to test for the PD-L1 protein and see if I might be eligible to take a PD-L1 inhibitor in a clinical trial. I felt reasonably OK on pemetrexed, but my scans were really not improving, and my oncologists wanted me to try something different. PD-1 and PD-L1 inhibitors are new drugs, still in trials and not on the market, that have shown great promise for activating the body’s own immune system to fight lung cancer. They are the hot new thing in thoracic oncology.
This time, we didn’t mess around. My Memorial Sloan-Kettering oncologist asked the interventional radiologist to take four cores: one for the PD-L1 test, one for the Foundation Medicine study and testing for ROS1 and RET, and two to save for future genetic testing that I might need for future clinical trials or that might become available down the road.
They didn’t find the PD-L1 protein, so I didn’t qualify for that trial. They did, however, to everyone’s surprise, find ROS1. We didn’t do the Foundation Medicine testing, because the genetic mutations are usually mutually exclusive; now that we knew I had ROS1, we didn’t have to go hunting for others. The next direction for my treatment was now clear.
Seriously: if you’re having a biopsy anyway, ask them how many cores they can take. And afterwards keep track of where they are and how they are being used.
Wish I’d known that, too! I’ve only had one biopsy, and the chemo seems to be working, so if I need another biopsy at some point, I’ll try to remember this.