Miscommunication & Confidence in Competence

My MD Anderson experience today was … frustrating. 

The day started fine.  Ann left me a freshly baked almond croissant and small pot of coffee with the local Houston paper in her bright dining room.  I didn’t make any wrong turns on the way to the hospital or parking garage, and I found a space on the bridge level and arrived at the Sarcoma center right on time. The board in reception said that radiation oncology was also on time.  Whiz.click.bang.

Sadly I didn’t have an appointment on the books.  Apparently, when the scheduler cancelled all of the appointments related to the now-delayed surgery, she cancelled this radiation oncology appointment too.  However, they decided they could still see me, albeit not by the head of the department, but by the more junior doc.  Still, better than to find out that I’d flown to Houston for no reason, right?

Sort of.  I saw the Doc for maybe 15 minutes, with the upshot being … I’d flown to Houston for no reason.  It turns out they don’t give a patient protocols to take home.  If I had wanted to do the treatment there, they would have set it up, but if I want to do the treatment elsewhere, I just set up an appointment with a radiation oncologist where I want to go.  That person then gets my records from MD Anderson.  If I’m comfortable w/ that person, I go ahead with the radiation.  If I’m not, I can always have the treatment done at MD Anderson.  No, they don’t have recommendations or know anyone anywhere in Colorado.  And this has always been their process.  How I could have gotten a different impression was a result of my having misunderstood.  The fact that the surgical oncologist said I should see the MD Anderson radiation oncologists but could get treatment in Colorado, and that his Physician’s Assistant was the one who scheduled my appointment in Houston, is apparently all the result of MY misunderstanding.

At least she was kind enough to answer some questions. 

• The reason to have radiation with my kind of sarcoma is that it reduces the risk of localized recurrence by 50%.
• The reason to have radiation before rather than after surgery is that post-surgery radiation requires a higher dose.  And post-surgery radiation is more likely to result in mid and long term complications not related to the cancer itself, including an increased loss of function.
• There is in fact a higher incidence of Major Wound Complications with pre-surgery radiation, but they think it’s worth that risk, because the MWCs are short term and can  be treated.  The only thing they do to minimize the risk is what they try to do all the time – minimize the risk of infection and watch the healing process.
• The radiation will be a five week course, five days a week. 
• “traditional” external beam radiation therapy machine, rather than a gamma knife, b/c the latter is only for small, targeted masses.
• She usually does a 7 cm (3 inch) margin around the site for this type of cancer, so all the way through my arm, up around my elbow, almost down to my wrist.  That's because it's a sneaky kind that sends out small tentacles which don't show up on an MRI, the best tool they have to see inside my arm without cutting me open.
• The radiation is indiscriminate, in that it damages all the cells it touches, healthy and cancer.  The difference is that the healthy cells recover, whereas the same genetic defect that caused the cancer cells to become cancerous stops them from recovering.
• The radiation damage will look and feel like a sunburn.  That’s the indication that the cells are damaged. 
• Surgery would then occur 4 to 8 weeks after the therapy is done, which is the time necessary for the healthy cells to recover.
• Other than the sunburn, and fatigue, there should be no side effects.
• There is no way to measure the success of the treatment other than by checking years later to see if the cancer comes back (and of course, it might not have come back anyway, or it might not have come back because the surgery was successful).
• She didn’t know why they didn’t recommend radiation last week when I was there, since she described this treatment approach (radiation before surgery) as standard practice.
• The fact that the MD Anderson pathologists read my slides differently than Dr Chris Fletcher @ Harvard is no surprise.  According to her, there is only a 60% likelihood that two pathologists will agree on a specific typing of a soft tissue sarcoma.  The MD Anderson diagnosis is not that different from Harvard’s, except that their type is “more malignant.”  This does not change its grade, which is still ‘low’ because the likelihood of metastasis, i.e., the risk of recurrence somewhere else in my body, as opposed to the risk of local recurrence, is small.  What it does mean is that the MD Anderson pathologists think the type they assigned, as opposed to the type Fletcher assigned, is even more likely to spread locally with the spindly offshoots.
• While there is evidence that getting treated at a sarcoma center improves overall survival rates, the evidence that supports that result is the differences in surgical outcomes.  There is no data one way or the other that it matters whether radiation is done at such a center.
• I should have the treatment anywhere I feel comfortable doing so -- my call.

One can’t fault MD Anderson’s patient orientation for this fiasco, however.  I’d barely left the building before my ‘patient advocate’ had called to say she’d heard I’d have a not-so-great experience with the radiation oncologist and was there anything she could do to help.  Except no she wasn’t in a position to refund the $600 I spent flying here and renting a car.  (Actually that’s unfair; I didn’t ask.)

At least the Southwest folks let me on the earlier plane so that I didn’t have to spend 2.5 hours waiting at the Houston airport.  For free (after they quoted Bill a $90 change fee).  It probably helped that I’d forgotten to take off my hospital bracelet.  I even had time to grab lunch, call and report out to mom, and make the appointment at the Boulder Radiation Therapy Center (Thursday next week, so they have time to get the records from MD Anderson) before my flight boarded.

This weekend, I’ll be ready to call Debbie, our nuclear physicist friend who runs these machines in Atlanta, to find out what I should be looking for, in terms of competence, when I talk to the doc at the Boulder Center.  Just another week of waiting.  At least Annie, Kevin, Michael & Joanna are coming to dinner tomorrow night -- we know they'll not only be distracting, but bring liquid distractions (although mostly we're doing this because Bill wants to make margs).