Saturday, July 27, 2013

Why did John get brain cancer? The answer is Lynch Syndrome

We were puzzled for a couple of months after we received and understood John's diagnosis of glioblastoma multiforme aka GBM. Everything about this form of cancer would suggest that in no way should a healthy 22 year old be susceptible to it. This is a disease that presents itself in a vanishingly small percentage of the population and almost always in patients in their fifties or sixties.

It was only this past February, when meeting with John's radiation oncologist  Dr. Peddada, that we gained some understanding. Dr. Peddada, in the course of reviewing our family medical history, homed in on Melanie's paternal side. The Satkowskis have an agonizing history of early onset cancer, primarily but not limited to, colon cancer. As Dr. Peddada took note of the fact that Melanie's father, uncle and all three of her aunts all had early onset colon cancer, with the aunts additionally suffering from ovarian, uterine and, in one aunt,  brain cancer he came to the conclusion that the Satkowskis were subject to the genetic mutation known as Lynch Syndrome.  A very simple test on John that was then run on Melanie confirmed his supposition.

A good explanation for what Lynch Syndrome is can be found at What is Lynch Syndrome from the NIH

Another good resource for Lynch info is at the UCSF site KinTalk

The impact of the knowledge provided by Dr. Peddada, and subsequently by the Lynch Syndrome team at UCSF, is quite profound, both on our immediate family and on the Satkowski's.  However, with this knowledge members of the family can understand if they are exposed to this mutation and take the important step of screening for the various Lynch cancers. There is some consolation in recognizing that John's diagnosis has provided a chance for other members of his family to anticipate and deal with these cancers in a proactive way, thus enhancing their lives.

Hawaii

The week following graduation in Spokane, John and two of his past roommates, Brian Biggs and Jordan Madrid headed to Maui for a bit of relaxation.  John had never been to Hawaii before and greatly looked forward to the visit. The fact that he was able to enjoy this trip with these two friends was a real treat.

Thanks to Jordan's mom they stayed at a condo in Kihei.  This was the view that they had to live with from the condo:






There were plenty of activities at the condo including tennis and shuffleboard plus they had access to a BBQ.  As you can see below Federer has nothing on these guys...






Impressively for recent college grads, they managed to get up at 2:30am, make breakfast and then hit the road at  3am to reach to the top of Mt. Haleakala for sunrise.  They all agreed it was worth the lost Zs.
















They also hit the Big Beach at Makena in Wailea but on a day where the waves were just too big, coming in large swells from the south, to try any boogie boarding. The lifeguards made a point of announcing the shutdown while looking straight at the lads. Wonder why?




Koki Beach
The next day they drove the Road to Hana, 100 plus twists and turns. Along the way they sampled lots of banana bread. ;)

Koki Beach
















They stopped off at Koki Beach and got their boogie boarding in.









They also got in a round of golf at Old Blue Wailea.  Hard to hit a golf ball when looking at these views.

John and Jordan


They finished off their trip with a Luau in Lahaina!  Plenty of Kalua Pork, fresh fruit, Filet Mignon, fresh fish,taro and grilled chicken.  John stuck to guava juice but the boys gave two thumbs up to the Mai Tais.

The next day it was back to the reality of the Bay Area and Portland but this was a trip they won't forget.  Rumor had it there were plans being laid on the flight home for a reprise.