A Second Opinon Is Important, Even If It Isn't Your Wife's

Today was a big day, lots of stuff accomplished.  Made appointments for my PET scan and MRI and got some stuff faxed to Dr. Nghiem. 

Before Christmas, I faxed my Informed Consent and HIPAA papers to Dr. Nghiem for his tissue bank and during the follow up phone call offered to fax more complete information about my medical condition.  I'm the sort that will throw everything I've got at you and let you sort out the important parts, rather then accidentally omit something you need.  My "med pak" contains a list of all my operations, my current meds, and a summary of whatever it is causing my visit.  If you want to see medical personnel smile, hand them one of these.  Their faces light up like a Christmas tree when they get actual history they can hold in their hands.  

After my surgery to remove the MCC tumor and affected lymph nodes, the surgeon recommended two doctors, a medical oncologist and a radiation oncologist for follow up treatment to remove (or at least reduce) the microscopic bits of MCC that may still be at the primary site. 

The MO has recommended a course of chemotherapy with either cisplatin or carboplatin.  The reasoning behind chemo was disquieting.  Chemo hasn't been proven to increase survival rates, but there is evidence (there's that uncertainty stuff again!) that it improves disease free survival.  Not quite sure what that means, but it sounds like they're saying that if they knew for sure I had only 6 years to live, chemo will keep me MCC-free for 5 years as opposed to having to endure it for the last 4 years of my life.

I'm still learning exactly what chemo does against cancer, but from my scant reading, I favor carboplatin because if its lower side effect profile.  As plus, I was informed by my dermatologist this morning that carboplatin is also effective against squamous cell carcinoma which plagues me greatly.  Huzzah!  I may never have to go back to the dermatologist again!  Given that carboplatin stands to be effective against MCC and SCC, it gets my vote.

I noted my visits to the fine folk at the merkel cell cancer group and they encouraged me to get a second opinion.  As luck would have it, there is a regional expert near me in Tampa, Florida at the H. Lee Moffitt Cancer Research Center, Dr. Vernon Sondak.  Tomorrow morning, my wife and I will consult with him to learn his opinion of the treatment recommended by the MO and RO, and especially his opinion of chemo.

Regardless of Dr. Sondak's opinion of chemo, I will undergo radiation treatments.  Lakeland Regional Cancer Center has an IMRT (Intensity Modulated Radiation Therapy) machine that's used to precisely deliver radiation to specific spot.  The favorite analogy explaining the difference between standard RT and IMRT compares using a single powerful flashlight to illuminate a small picture on a wall as opposed to using several smaller flashlights aimed at different angles to point at the same picture.  The powerful flashlight will light up the picture, but also most of the wall too.  The smaller flashlights added together will provide the same amount of light on the picture, but without as much spillage.  Substitute "tumor" for picture, "damage" for spillage, and "rest of my body" for wall, and you'll understand the advantages of this technology.

In order to precisely aim all these radioactive flashlights, the RO needs to know what's inside my head and she'll learn this by using a using a PET scan and an MRI.  I never realized how much work went into planning a course of radiation.  I figured it wasn't much more complicated than sitting next to a chunk of uranium for awhile, and all the radiologist did was determine how long to sit.  Oh, how ignorant I was!  Seems that hitting the tumor is the easy part -- the real skill is planning the RT to avoid hitting the good parts like nerves and other non-malignant tissue.  For instance, my RT will be directed to the right face and right neck.  Easy enough to do, but how to avoid destroying the nerves and muscles that control swallowing?  My voice?  My optic nerves?  

So after my appointment with Dr. Sondak in the tomorrow morning, I'll show up at the imaging center for a PET scan (which will also be useful to the MO to see if there are any other MCC mets hiding).  PET scans are serious stuff.  I've been ordered to eat or drink nothing during the six hours before the scan - not even a drink of water.  No gum, no mints, no tobacco, no brushing of teeth.  Apparently stray sugar metabolism is a big deal.  Since the scan is in the afternoon, I'm allowed a light breakfast (but no carbohydrates!) before 8:00 in the morning.  Afterwards, I'm supposed to drink lots and lots of water and stay at least 6 feet away from pregnant women and small children for 24 hours.  No mention of small animals, but to be safe, the cats are going to have to find another place to sleep tomorrow night.