Lynch Syndrome and the Family

Lynch syndrome is a family matter and is passed down through families.  Following diagnosis of Lynch syndrome, the most loving thing any person can do is share that diagnosis with other members of their family.  Its not just a loving act, its a moral act, especially since Lynch syndrome targets families and in most cases, there are ten to hundreds of other individuals who may be at risk and whose lives could be saved as a result of your diagnostic results.

There is no “how to manual” directing individuals in how to complete this process and it is often difficult and emotional and communication between each and every family is very different.  Nonetheless, a gift of a diagnosis of Lynch syndrome is a gift of life.  It affords individuals an opportunity to grasp control over one’s cancers

and grants them a sense of empowerment in being involved in preventative measures in order to protect themselves and their families.  No matter how you reveal the existence of Lynch syndrome, a diagnosis leads to prevention.

When advising children of the condition, its best to do so in small increments and in a confident and positive manner.  Most individuals who grow up within a Lynch syndrome family are acutely aware of the family history of cancer, including children.  Its a situation that is difficult to conceal from a child, so its best to simply be open about it. As time elapses, children become accustomed to its existence and both positive and negative future possibilities and are therefore open to genetic testing and ongoing surveillance, following adolescence.  Finally, when they are of age, they will not only have the tools of being able to cope with it, but be able to make important decisions as to how to prepare for the future and living with Lynch syndrome.

Kids are amazingly resilient and adapt to situations quite easily. Their minds operate with an incredible sense of logic and understanding.  With an open attitude and conversation, children become conditioned to prepare for testing when they become older.  If hope is emphasized, there is little need for fear.

Occasionally other adult family members, upon learning of the diagnosis, don’t immediately wish to engage in testing.  That response is often confusing to us, especially after what we, as Survivors, have experienced.  However, it is important for us to remember an initial diagnosis of Lynch syndrome or cancer is often frightening and overwhelming.

Cancer is often harder to endure for those who love and care for us than it is for us.  As a survival mechanism, we develop an early understanding with it and quickly find ways to adapt to fighting it.  While chemotherapy is terribly difficult and others see the trials we experience with it, they really can’t totally comprehend how we realize our “enemy,” which causes us so much pain, can also be our friend in motivating a new attitude and revitalization of survival within us.

For many of us, cancer is a bittersweet experience and a brutal teacher.  Through it, we learn how to appreciate and cherish life and relationships, as well as experience a new, intense desire, stronger than anything we have ever experienced before.  We learn we have only two choices, to fight and to live or to give up and face the alternative.  The world is no longer about “me and mine,” its about “us and existence.”

To those who care for us, what they see is cancer is a terrible unknown that devastates people.  To us cancer is a terrible, familiar enemy that we understand and instinctively know to fight, while it tries to devastate us.

Finally, we, as humans, are predisposed to fight or flight, when confronted with fear or intense stress.  Some of us fight and some of us run and thus attempt to escape the threat.  Eventually, with time, and eventually seeing the alleviation of the threat, individuals often come around and submit to testing.  It takes some longer than others and perhaps the message needs to be rebroadcasted in a different, nonthreatening manner, “Genetic testing is about life.” rather than, “If you don’t test, you will die.”

Therefore, time is needed for others to adjust to the diagnosis. In that situation, its best not to push, but explain the facts in a calm, logical manner.  Simply ask the individual what difference would occur in their lives if they determined to test and leave the decision up to them.  As they see family member after family member test, they will eventually follow suit, hopefully.

When speaking to genetic counselors, physicians or geneticists, only tell them what you have no problem being put down into a medical record.  Even if you say, “This is between you and me,” you can’t count on that not becoming a permanent part of their health record and has been known to create extreme conflict and difficulties within a family.  So, be cautious with personal information which is incidental to the family health record.  Sometimes, it is simply best to document the family history, give it to the loved one and let them give it to their counselor.

The best thing that can happen from taking a test is one may be negative and the worry of the unknown timing of the almost certain impending cancers is alleviated as are the fears of the need to protect one’s children from Lynch syndrome. The uncertainty is over.

The worst that can happen is not very different from the current situation without taking a test, with the exception of the positive factor that you will be able to receive yearly surveillance in order to apprehend and remove tumors before they become cancerous or life threatening.  In viewing it from that perspective, the uncertainty still exists as to when and where the cancers will come, if at all, however it is offset by the hope and the knowledge that with ongoing surveillance and early detection, the tumors are more easily detec ted early and successfully treated.

In both scenarios, uncertainty is lessened or removed from one’s life.  There is no more unknown and there is hope and empowerment in being afforded surveillance testing.

With time to digest the diagnosis, time to see what happens with individuals whom have been diagnosed, time to educate one’s self and time to assess and reassess all the options, the individual will have the opportunity to make a choice, however comforting or however painful that choice may be to us.