Aren’t always clear cut. For some tumors things are very clear: there is a standard treatment. Protocols are well worked out and a high percent of patients do excellently. ALL (acute lymphocytic leukemia), Hodgkins Lymphoma, skin cancers, most basal cell tumors are some of those areas where great strides have been made. Other cancers – pancreatic comes to mind – are particularly nasty both in the way they so rapidly grow and in the fact that they are often discovered at an extremely late stage. Non-Hodgkins Lymphoma is no more a single disease than Breast Cancer is a single tissue type. It is those pesky details of cell line original, actual typing and cell behavior which determines what the medical community recommends.
I’m on the low end of the aggressive spectrum. No, wait – my particular form of lymphoma is on the indolent end. Tissue wise, same cell line and tumor that caused me problems in 1995 and probably has been very quietly and insidiously smoldering away for a couple of decades. It make a mistake in becoming a large enough mass to be noticed. So now I have to do something.
This leads to the question of what to do, and where to do it. I’ve mentioned Tumor Boards which review the path findings, the patient and make a treatment recommendation (in my case the surgeon said – nope, not touching that mess…..). The Sacramento VA group (affiliated with UC Sacramento) seems to be a bit more aggressive than the SF VA (part of UCSF for the purposes of this discussion). I can do research. I turned down everything 21 years ago because it didn’t make any sense to me. Why would I want chemo/rads and a bone marrow for what was essentially indolent disease (where the Germans recommendation was wait and see).
I find myself now in a not so dissimilar dilemma. Martinez is easy to get to, the nurses who run the infusion service are amazing. But there are a couple of catches. The waiting area is common with a couple of other services. The oncologist is solid, she knows and understands the military, she likes working in the VA system. Mostly, she is a solid tumor person – specifically breast cancer. If that was my issue – I’d be first in her line. But it became obvious to me today that she is not really comfortable with my turning down her recommendation of adding a chemo agent to the immune therapy. My desire to lead a normal life (fit it in with your plans to travel? Hello – we are not communicating well) doesn’t work as well for her. I’m looking to control with minimal risk to the rest of my body. I’m quality over quantity.
So if I take the choice of driving the 35 minutes to Martinez I am putting her in the position of having to support a plan she honestly doesn’t think is right. I am forcing her to practice substandard medicine in her view. I’m also afraid that I am going to continue to get pressure to change my mind/disapproval. She has a right to her professional opinion. I have the right to be a Nopetpus. (I don’t use the W or B words)
After Wed, depending on how it goes, I can also check in with the SF VA and tell them that I would prefer to come there for infusion therapy. The downside is the time and distance. Bus+Bart+BauerShuttle. Reverse that in the afternoon. The upside would be that the docs there were fine with my choice of only immune therapy. If something doesn’t go well – the infusion room is down the hall from the inpatient ward.
The two most knowledgeable people in my household (Dani & Alex) are all for comfort, confidence, and supportive staff. That being at potential odds with your provider is a “very bad thing.” And if nothing else, switching to outpatient at the SF VA, I could provide a cautionary tale to oncology fellows on how not to act if they ever become a patient…
(Hey – did you think I was going to entertain you with trying to find a parking space @ Costco on the way home?)