Mets Day 487 - NIH consultation

Today I met with Dr. Andrea Apolo, a clinical researcher at NIH who specializes in researching different potential therapies for bladder cancer.  (A recent interview that she gave to BCAN is here.)  Coincidentally, this past weekend she was co-chairing BCAN's 2013 Bladder Cancer Think Tank, an invitation-only conference that gathers the best and brightest doctors who are working on finding a cure for bladder cancer.  She specializes in bladder cancer clinical trials, and is probably the single most knowledgeable person in the world about the latest research and potential therapies for metastatic bladder cancer. 

While I was sitting in the NIH waiting room, Dr. Steinberg, my surgeon from Chicago, called to say that he had received my email of last Tuesday, and that he had sought out Drs. Plimack and Apolo at the BCAN Think Tank to discuss my case.  Dr. Steinberg said that, given my history, I was right to be concerned about the CT scan.  He added that the location of the lymph nodes (under the clavicle, adjacent to a bunch of vital arteries and nerves) and the relatively small size of the node (just over 1 cm) would make it virtually impossible to biopsy at this point.  He also said that he agreed with my seeking out Dr. Apolo, and observed that, between Drs. Plimack, Apolo, and Aragon-Ching, I was being followed by some of the best bladder cancer oncologists in the field.

I had brought the disks with my FCCC scans for Dr. Apolo and her team to review.  After a nearly two-hour wait and a long screening by one of the NIH fellows, Dr. Apolo joined us, saying she had spent some time reviewing my scans in detail.  She didn't add anything new about my current status:  the enlarged nodes were worrisome, but they were still relatively small, being just over the threshold of clinical significance.  She confirmed that it would be virtually impossible to biopsy the nodes at this point, saying that even with an ultrasound-guided CT, the node should be at least 1.5 cm to have a decent chance of success, and 2 cm was more likely to be have a successful biopsy.  Of course, she said that if the next CT scan showed the node was 2 cm, then it was 99% certain to be metastatic anyway.

I told her that I'd like to know sooner rather than later.  Dr. Apolo bluntly replied that knowing earlier wouldn't make any difference in either treatment or the odds of survival:  distant metastatic bladder cancer is fatal.  I thought, but did not say, that knowing earlier would remove the uncertainty that I now feel.  More on that later.

Dr. Apolo said that, until the distant mets was confirmed, it was too early to discuss clinical trials.  She remembered that my BC was HER2 positive, and said that she knew of a couple of experimental therapies that in some cases had slowed the progression of HER2 positive BC.  She also said that, if NIH did the biopsy, they would do a genetic sequence of my cancer.  That would enable them to better identify both the mutations that had led to my cancer, and the most appropriate clinical trials to see if anything could slow the progression of the disease.  (Note to self: ask Dr. Aragon-Ching if GW can sequence my tumors that were removed in my TURBT's.)

Dr. Apolo recommended that I have a follow up CT scan in three months.  I told her that FCCC already had scheduled a follow-up for October, and she thought that was aggressive, but if FCCC would do it that early, then that was great.  She said that she would follow-up with Dr. Plimack as well as Dr. Aragon-Ching of GW, who I will see on Wednesday. 

After leaving, I thought more about why I wanted to know whether or not I now had distant mets.  I understand that whether or not I know if the nodes are positive will not extend my life.  I eventually decided that the reason why I would want to know now, rather than two months from now, is that I likely would increase the urgency of my life if I knew with certainty that my final days were approaching.  I would probably retire from my law firm; get moving on updating my will and trusts; sift through and assemble my journals, emails, and other writings that document large chunks of my life; sell our vacation house; try to get complete the renovations on our primary home so Jennifer would not have to deal with it; dispose of some of the detritus of life; visit extended family; prepare my immediate family for life without me; and better prepare myself for eternity.  Other than that, I wouldn't change a thing. 

After working through this mental list, I asked myself why I'm not doing those things now.  (In all fairness, I have been doing some of those things.)  The answer, I think, is a combination of exhaustion, inertia, and not wanting to deal with it.  Maybe this ambiguous scan is the kick in the butt I've needed to once again refocus my like on what really matters.