Today I met with Dr. Shane Lloyd, a radiologist at Huntsman Cancer Center, to discuss whether radiotherapy might be appropriate for my supraclavicular node. That cluster of lymph nodes, located on the front of my left clavicle near the base of my neck, has been where distant metastatic activity has most often shown up: first in 2013, propping me to have ddMVAC chemotherapy; again in late 2014, which led to the discovery of and treatment for pulmonary embolisms; in early 2015, when it was the base of a string of tumors growing up the left side of my neck towards my earlobe (and which shrunk dramatically when I started nivolumab immunotherapy clinical trial). In March 2018 that cluster of nodes again lit up, showing my cancer had returned, and I resumed immunotherapy. Since then the tumor had beens stable in size -- not growing, but not shrinking either. It's still showing metabolic activity. Aside from a small node in my lung which may or may not be an active tumor (and which we're monitoring), that supraclavicular node is the only tumor in my body. The question is whether I should have radiation therapy to kill it.

Radiation is usually not used on systemic metastatic cancer, like my TCC. I know that cancer cells are spread throughout my body, and radiation can't be used on every cell unless the goal is cremation. In my case, however, I have this single persistent tumor that flares up every time every time my mets are growing. So my doctors are proposing to use radiotherapy to kill that tumor. Today's meeting was an initial consultation with the radiologist to discuss whether to proceed.

Dr. Lloyd explained that he proposed using a total of 30 grays (Gy) of stereotactic body radiation therapy (SBRT), spread of three fractions (or rounds), every other day. Sometimes this SBRT is called Cyberknife, or Gamma Knife, or X-Knife, or TomoTherapy -- all are merely brand names for similar equipment. Each treatment would last about 30 minutes. The treatment area is defined using a CT scan; multiple beams (up to 30) are focused on the target (the cluster of metastatic supraclavicular nodes), and the parameters of the radiation are closely defined. The intent is to minimize any side effects to adjacent areas. Since the supraclavicular node is close to my throat, I may have a sore throat for a few days. It may be hard to swallow and my skin might be tender. Those side effects are usually transient.

Longer term risks include a 10-20% of a thyroid deficiency (I'd be tested annually, and would have to take a pill if that occurs). Other risks (all less than 5%) include radiation pneumanitis (scarring in lung), shortness of breath, dry cough. Those can be treated with steroids and usually resolve. Dr. Lloyd also mentioned a number of other risks that were less that 1%, and which I immediately forgot. Dr. Lloyd said that there was no evidence of which he was aware that this type of radiotherapy could cause or contribute to an autoimmune disorder.

In addition to getting rid of a persistent tumor, Dr Lloyd said there is a chance that radiotherapy could have a synergistic effect with immunotherapy, and boost my immune system's ability to recognize and fight cancer. This is called an abscopal effect. He said that there were no Phase III clinical trials that had definitely shown an abscopal effect between radiation therapy and immunotherapy. He noted, however there were recent articles and studies that suggested radiotherapy might have an abscopal effect on immunotherapy. I'm going to do some more reading about this.

For now, I've given the green light to move forward. I want to consult with other doctors about this, however, and may change my mind. But the risks seem low and the idea of nuking millions of cancer cells in my body has some appeal.

[5/23/19 edit: Here are some additional articles on this subject that I'm reading]:

Harnessing the Immunomodulatory Effects of Radiation in Urinary Bladder Cancer, . 2019 Feb; 11(2): e4108

Abscopal Effect of Radiotherapy in the Immunotherapy Era: Systematic Review of Reported Cases, . 2019 Feb; 11(2): e4103.

Immune mechanisms mediating abscopal effects in radioimmunotherapy, 2019 Apr;196:195-203