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                             Photo - Courtesy of Cops for Cancer

 

Courage is not the absence of fear but rather the judgment that something else is more important than fear.  ~Ambrose Redmoon

 

 

SURVIVAL 101

 

This section is for us, who are at high risk for Lynch cancers, as well as for those who care for us.  These pages are intended as a road map, created by those who have been through the process and designed to assist others, who, hopefully, will pass the information on and continue paying it forward so families will be protected and lives can be saved.

 

 

Today's physicians are under more stress than ever before.  With a shortage of general practitioners nationwide and demands upon their time, as well as a lack of awareness and education about Lynch syndrome, they don't have the time or the background knowledge to answer the numerous detailed questions of the affected individual.  Lord knows we not only have a lot of questions about the management of Lynch syndrome and how to live with it, but a considerable need for aggressive treatment of Lynch syndrome cancers by our medical professionals.

Most of us don't care about molecules interfacing with other molecules, the length of the strands of DNA within chromosones and the scientific characteristics which are the basic cause of a specific mutations. Our needs are far more basic.  In our world, there are enough languages we have to understand, without us having to learn and understand technical medical and scientific terminology.  At some point, medical studies and information needs to be translated into a layman language we can all understand.

 

Essentially, what most of us, at high risk for Lynch syndrome cancers, want to know is:

  • Do we have Lynch syndrome?
  • What is the effect upon my family members and my children?
  • Are we or our loved ones going to get the cancers?
  • What are our odds of survival?
  • Are we or our family members going to die?
  • At what age will we get the cancers, if we do?
  • What can we do to help deter the cancers from occurring?
  • Is there affordable treatment for it and if so, what is it?
  • How do I find a good medical team who can care for me and my family?
  • How do I do to prepare for treatment of cancers?
  • Will it affect the ability to get insurance or will my current health insurance rate increase?
  • Will my family be discriminated against?
  • How can we prepare emotionally for a lifetime of living with Lynch syndrome?
  • Are there resources for us to get assistance?
  • What annual tests do I and my family need in order to stay alive?
  • How do I tell my family about this inherited syndrome?
  • How will this change our lives?

Those are a lot of questions and answers to consider when one is diagnosed.  The months, and sometimes years following diagnosis, are a time of uncertainty, of being diagnosed...and especially if one is facing with the challenge of recovering from a cancer.

This section is intended to assist one another through the myriad of processes, the hundreds of questions and the fears of the unknown encountered during the journey of traveling through life with Lynch syndrome.  If you have a question and/or a need, just call... 702-298-3910.  We are here for you.  That is what Lynch Syndrome International is all about...caring for one another, creating public awareness of Lynch syndrome, educating medical professionals and protecting families and saving lives.

 

 



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