Putting Together A CLL Team
We suggest that all of us print out the CLL TEAM document, fill it out and post it on our fridge or a bulletin board to remind us that we have a whole gang supporting us and that cancer is best played as a team sport.
We strongly believe in the necessity of establishing the team, which is outlined in the accompanying CLL TEAM. There is good data to support our point of view.
In this article, published in 2012 in the journal CANCER, Dr. Shanafelt and his fellow researchers found that even when controlling for other prognostic markers, patients who consulted a CLL specialist lived an average two years longer than those who did not. They were also three times as likely to enter a clinical trial.
The player we refer to as the WORLD EXPERT, or the CLL Expert, is the critical strategist or quarterback for our treatment plan, but he or she needs someone to whom to pass the ball. This person should be the available and co-operative LOCAL EXPERT.
The CLL ACOR group has put together a list of CLL experts from around the world. While it, like any similar list including ours, needs to be constantly updated and neither we nor they can swear to the reliability of the information, it is an excellent place to start your search for a CLL expert as part of your team.
The INTERPRETER, or note taker or recorder who joins us for our critical clinic visits, will ensure that we accurately hear and remember what actually transpired during our appointments, that our questions are answered and that the answers are understood.
It is equally important that we have our support networks in place. Though the data is inconclusive, some research, such as this article on breast cancer survival published in this ASCO publication, suggests that social isolation is an independent risk factor for early mortality.
We may not all have a wide network of friends and adult family members (PERSONAL SUPPORT) to help us deal with our cancer, but we can rely on our Internet friends (PERSONAL SUPPORT) for some sound counsel and succor.
The last important point before we grab a pen and complete our team roster is to carefully consider how all these players will get along with one another when times get tough.
It is guaranteed that there will be disagreements among the experts. Mistakes, big and small, and crises along the way are not uncommon. We all need a team that can work together in the good and bad times.
We are all in this together.
Brian Koffman 2/26/15 Edited by Patty Koffman