The second opinion

Last week I met with Dr V K Gadi of Seattle Cancer Care Alliance (SCCA) for a second opinion on next choices. Here's what he had to say:

My cancer is "indolent," that is, slow-growing. It's taken 13 years to get to this point from my original diagnosis in 1999. That also means it can be harder to treat with chemotherapy since these meds attack faster-growing cells. And I get the side effects even if the chemos aren't as effective on my slower-growing cancer.

My treatment began with aromatase inhibitors (AI's) and other estrogen fighting drugs, lasting for seven years. High dose estrogen and use of two AI's such as Faslodex and Aromasin are possible treatments.
Side effects from chemotherapies present more of an issue than the chemos themselves. Xeloda may still be a possibility, even though Dr G has been reluctant to prescribe it, given my hospitalization in 2009 when taking 5FU. (Xeloda is the oral form of 5FU.)

Targeted/biological agents, such as Avastin could be (and have been, in the case of Avastin) included in my treatment plan.

We should retest my DNA to see if I carry the BRCA1 and/or BRCA2 genes. Whole genome testing might not have been available in 2003 when I had this done and things have changed in the interim years.

There is a clinical trial I am eligible for, of Vorinostat with an AI and imaging. This trial tests both the efficacy of Vorinostat for metastatic breast cancer (the FDA has already approved it to treat other cancers) and the efficacy of a fluoroestradiol scan (FES). As I understand it, the FES is similar to a PET scan but without the glucose solution.

I'll outline the trial in my next post. But first I have to vent a bit about SCCA itself, since the trial would require my receiving care there for at least eight weeks. Bearing in mind that I don't handle change well these days, here are my impressions of SCCA:

Of the four individuals I met, only one person, the teaching fellow, offered her name first in greeting me (as in, "Hello Ms Cohen, my name is _______.") The PA who took me to the office, Dr Gadi, and the research assistant for the clinical trial did not. The PA simply stood over me while I was in the waiting room. When I noticed a pair of legs in front of me and looked up from my book, she said, "Ms Cohen? I'll take you up to see Dr Gadi." I had to ask, "And your name is ....?" Dr Gadi bounced into the exam room talking about treatment options. I had to interrupt him to say, "You must be Dr Gadi." The research coordinator and I met in the hallway, and I was the first to ask, "Are you looking for me?" Not a good way to welcome a patient. 

While waiting to be seen, I couldn't log into the SCCA wifi network. This may seem petty, but if that's what helps make the wait seem faster, or if I need to be in touch with someone via email, not having access to wifi is extremely annoying. I spoke with a man who was working on his laptop, and he said he frequently could not log onto their system. 

SCCA is affiliated with the University of Washington, and so residents/teaching fellows (maybe this isn't the proper term?) participate in seeing patients, under the supervision of the treating physicians. I recalled from my previous visit a year or so ago that I would see a fellow before I saw the oncologist, so I was prepared for my appointment to take an additional hour.  

As I expected, the teaching fellow came in first. She reviewed my history and then was unable to locate the most important page in the box of medical records I hand-carried in the prior week: the chart Dr G made with all the chemos I'd taken, when I began and why I'd stopped taking them. I had carefully placed this paper on the top of the entire box of 250+ sheets so that the doctor would see it first. Neither she nor I could find it in the pile, and she had to ask the secretary to call Dr G's office to ask them to fax another copy. This inattention to detail frustrated me. 

Dr Gadi was so excited to find another patient who would qualify for the Vorinostat trial that he set up a meeting with the research coordinator for that same day. I spent another hour-plus waiting for the research coordinator and then talking with her. I am glad we spoke, because she was able to answer many of my questions. But I had not prepared to spend more than three hours at SCCA.

Something about SCCA just rubs me the wrong way. I'm sure the people are perfectly pleasant, but both my experiences left me stressed, annoyed, frustrated, and out of sorts. I was so pissed off and tired from the long day that I couldn't focus at rehearsal that night and inevitably, took out some of my frustrations on my friends in Dunava. So regardless of my eligibility to participate in cutting-edge science, regardless of how I might benefit from this new, experimental treatment, I have to ask myself if it will be worth this level of frustration. So much will depend on what Dr G thinks and if my health insurance company will fund the lab work and doctors' visits. But it will really come down to if I can stand going to SCCA.