The Diagnosis and the Path Ahead

We met Roy’s Liver Tumor Center team at Methodist. We may have startled them because we were not quite freaked-out enough about the word “malignancy” and we suspect they thought they were going to be breaking this news to us. Maybe other people actually attend these meetings thinking these things are not malignant? It’s been two weeks for us knowing about this, so it wasn’t a new idea. They did say our familiarity with cirrhosis and his long-term liver disease meant they weren’t needing to explain as much as they sometimes do. The lead doctor for Roy’s HCC will be Dr. Sudha Kodali who runs the liver tumor clinic.

Nurse Practitioner Benjamin took Roy’s history and told us about the multidisciplinary Tumor Board’s review of his case and the imaging from January 30. The Tumor Board categorized the tumors according to the Liver Imaging Reporting and Data System (LI-RADS) for Hepatocellular Carcinoma (HCC) during that meeting. Radiologists created the LI-RADS to standardize reporting for CT, US and MRI results related to HCC. With this classification and all of Roy’s medical records, the board then determined which should be the most effective treatment for him.

The tumor of most interest is a LI-RADS 5 (LR-5) in the central part of his liver. It has two itty-bitty pals that are considered LI-RADS 3 (LR-3). An LR-5 is a tumor that the radiologists can see and rule as definitely malignant so it does not require a biopsy for confirmation. The LR-3 tumors are “tiny” and likely also HCC (highly probable but not definite) but less important at the moment.

Based on the size of the primary tumor, we think Roy’s HCC is in Stage B. Honestly, we forgot to ask as we were focused on what would be done and had already deduced he is at B based on the size. Stage B is intermediate. Next chance we get, we will get this confirmed – it’s a question most people ask when they encounter cancer so we know other people want to know the answer.

Because he had a lymphectomy in November, he gets to have a Chest CT before treatment can begin. They need to be sure the HCC has not gotten out of his liver. There are probably some other tests as well.

So what’s the treatment? Because Roy’s liver is cirrhotic, they cannot just cut out the tumors and systemic treatment like chemotherapy or radiotherapy outside his body would not have much effect. The Tumor Board decided to go with a Locoregional Therapy (LRT) that is safe for someone with cirrhosis – a SIRT or Selective Internal Radiation Therapy called Yttrium-90 (Y-90). Essentially, the interventional radiologists will insert, through his artery, some small “microspheres” of Y-90. The Y-90 beads (for want of a better word) will go into Roy’s liver where the tumor is to deliver radiation to that area alone. It’s a bit fiddly and requires a lot of planning and pre-procedure testing. They don’t want to put this radiation anywhere else after all. In phase 1, the tumor team will inject some dye and do some special imaging to be sure they know exactly where they are going to go with the Y-90 and measure the “lung shunt function” to make sure this treatment won’t do damage to his lungs. In phase 2, they do the actual placement of the Y-90. Roy will get his schedule of appointments on Friday. He can expect an extra helping of fatigue and potentially some nausea in the weeks following. The goal is to shrink the tumor and slow its growth so that Roy can move toward a transplant.

Roy will also be evaluated for transplantation. That process will take roughly two days of a variety of tests and educational sessions and consultations about money and insurance. If he is listed for transplant at the end, the wait could be at least a year, maybe two, because demand greatly outpaces the supply of healthy donor organs. We were pleasantly surprised it would only be 2 days of testing and such – the last time in 2004, it took a week plus some extra procedures the following week. A lot has changed since then!

Roy’s follow-ups will be every 3 months. Roy will have imaging, lots of imaging, at that interval. And he will have a Chest CT every six months. We mostly want the HCC to stay in the liver – it needs to stay put.

While he prepares for and goes through this treatment, Roy will continue his same prescriptions, is supposed to eat a low-salt diet and try to stay active, while as the team said today “stay[ing] away from sick people.”

Our trip was uneventful: the standard highway driving on 6 and 290 and I-10 to get down and back interrupted only by spots of road construction, lots of dust/dirt blowing off of dry fields, and drivers who either wanted to poke along below the speed limit or pretend they were in the Grand Prix.

Overall, I think we both are ready to get things moving. Now, we wait for information on specific dates and tests and procedures.