Sunday, January 20, 2008

Answers and a Plan

There were questions, there was a meeting, answers and information were given, and a plan of action was laid out.
In the meeting were: Lizy & Paul (Evan’s parents), Dr. Wechsler – Chief of Pediatric Oncology, Duke; Dr. Prose – Chief of Pediatric Dermatology, Duke; Dr. Marcus – Chief of Pediatric Plastic Surgery, Duke; Dr. Greiner – Pediatric Oncology Resident Fellow. As a friend commented the next day, there was enough brain power in that room to power the QE2 from London to LA.
The Questions with Answers in BOLD
What exactly are you proposing?
Team Proposal (TP): Wide margin excision of the area surrounding the original mass site to add a 2cm safety margin at the surface, and a depth of the underlying tissues beyond the depth of infiltration and scar tissue from the previous surgery.
When? 10, 30, 60, 90, 180 days
TP: Sooner rather than later (1/22/08 Dermatologist visit, 1/31/08 Pre-OP, 2/1/08 Surgery) PET/CT follow Up Scan ~5/1/08.
Where What exactly are you looking to excise? How deep? How wide? What structures?
Surgeon: ~21 cm length x ~4 cm height x Fascia level + Scar + some latisimus muscle
Why are you recommending this course of treatment at this time?
Oncologist: As a precaution to try to ensure that any cancer cell migration will be captured so as to attempt prevent a recurrence. As there is no expectation of a ‘clear margin’ except at the depth of the surgery, using the 2 cm protocol demonstrated to be successful in more prevalent melanomas seems most conservative and most preferable from a patient outcome.
With a negative scan, what is the motivation to excise further?
Oncologist: While the results of the 1/31/08 scan were extremely encouraging, this particular scan is only sensitive down to detecting tumors greater than 1 cm diameter.
What were your thoughts on the articles which were sent to Dr. Greiner?
Oncologist: Fascinating articles of cutting edge science; however, the clinical application of articles has not yet been formulated, and the methods of determining genetic information requires a special post surgical process, not the standard formalin/paraffin wax fixing.
Are you open to a genetic study of the tissue from block 7?
Dermatologist: Due to the restrictions noted above, no. However, since two of the authors of the article on GCN are friends, I’ll call them and see if they’re interested in tissue from this surgery.
Why are we having to ask for information?
TP: Because most parents do not want it, so this is new to us. That said, it is very encouraging to us that you are so active in your advocacy for Evan. Anything you want is there for the asking up to and including our raw data, Do you need a copy of the actual PET/CT scan?
Do we need a patient advocate?
No, They wouldn’t do nearly as good a job, please continue to ask all the questions you can think of, and please bring any further articles of interest forward.
Do you now consider the whole excised mass to be melanoma, even though the melanoma only showed up in one very specific location and only in very limited sections?
Yes, as a precaution, we must consider that as there were no ‘normal’ sections, that the entire mass must be considered to be melanoma, and it is that information that we base the recommendation of wide margin excision.
Evan will be picking up a video camera and putting together a short movie in the near future for this site. A note of thanks that your continued prayers and notes of support are greatly appreciated.


Paige said...

Evan & Lizy: It was so nice meeting the both of you at Mason's party on Sunday. Please know that you and your family are in our thoughts and prayers.


Nic said...

Lizy and Evan, Emily and I are sorry you were unable to attend our wedding in December, but wanted to thank the two of you for allowing Paul to travel to Michigan to be apart of our special day. Evan, you are truly blessed to have such wonderful parents! Please know you and your whole family are in our thoughts and prayers daily.

Emily and Nic Karchon

Anonymous said...

Hi Evan,
My name is Betty Moon, and I go to school with your uncle Jon. He talks about you all the time and is very proud of you. I travel a great deal all over the country, and last week I was in Florida. I had an opportunity to go to the Kennedy Space Center, and my visit there reminded me that your Uncle Jon said you are interested in Space. So check your mailbox in a few days, cause I've sent you a couple little things from there that I hope you will like. Heard you had a birthday a few weeks back - so Belated Happy Birthday too! I see your uncle John next week in Cleveland so I'm sure I'll hear an update on you and your whole family. Jon does like to talk about you! All my best ~ Betty Moon