~ MANAGEMENT DEPARTMENT ~
Waiting Room  |  Linda's Office  |  Presentations   l  Contacts  |  Library

My Observations And Suggestions:

DO NOT SAY, "WHATEVER YOU SAY, DOC."

Had I been informed I would have insisted on a biopsy from the original dermatologist and would have rejected the liquid nitrogen treatment. Today I am convinced, my status as a melanoma patient could have been avoided.

If you are the patient and are well enough, you must become your own case manager.  I strongly encourage you to enlist a family member or friend to take over if you are not able to keep up with the task.  Today's medical facilities and health care organizations are a convoluted maze requiring strength, courage and management skills to successfully navigate.

You simply cannot expect or rely on systems to work efficiently.

Remember this is your life and no one but you has sole custody of it. No one will ever care as much about your health and well being as you do. Appointments will be delayed, tests will be fouled, records will be lost, insurance claims will be denied, doctors will make errors, reports will be mishandled and confusion will reign. You should try to prepare for these eventualities by taking charge of your case through education and persistent aggressive pro action.

I suggest keeping chronological paper records of questions and answers, symptoms, tests, research and medications. Ask for your records regularly and keep them in a safe place.  Read them and ask questions if you do not understand terminology.  Stay informed by reading and use my web site for links to valuable information. I believe that focus and determination are the most important tools needed to fight the constant battle with this horrific disease.

I submit for your information, a list of questions for your doctor. These were suggested by another melanoma patient.

  • How aggressive a tumor do I have?
  • What options are available, i.e. surgery, chemo, radiation, clinical trials?
  • What are the success rates for cure with any or all of these modalities?
  • What are the success rates for remission with any or all of these modalities?
  • How will these treatments affect my current physical health?
  • If you were in my shoes, which would you choose?
  • If treatment is your choice, where would you go?
  • What are my odds with choosing no treatment?
  • Why should I choose you as my treating physician?
  • Will you be honest with me and tell me what is going on with my body and my disease?
  • If I don't respond to treatment,will you tell me when enough is enough and will you promise to direct me to the resources I need, such as hospice care?

    • How to help your doctor before your appointment. A free download.

    theStatus.com is a private web communications site for patients, family and friends.

    Internet Health Directory An extensive reliable resource supported by the top health web links.

    My management has been greatly enhanced by sharing current and critical information and resources with other melanoma patients and their families and caregivers.  I encourage you to join support groups and communicate with other patients.  One of the best and most up to date sources I have discovered is an online List Serv  that is comprised of hundreds of melanoma patients and caregivers from all over the world, including a physician who is a Melanoma specialist.  I highly recommend subscribing to that list.

    Management Links:
     List Serv (Highly Recommended) ListServs are collaborative, opt-in email lists.  A copy of each message sent to the list is automatically sent to each member of the list. MEL-L is a support group for patients, caregivers, doctors and researchers of the disease of melanoma.  Here patients and caregivers can discuss their experiences with treatments, doctors, family, insurance and job related issues...anything related to the illness they are dealing with knowing that the audience includes others who know what we are going through.   To subscribe, send an email message.   In the body of the message put: subscribe mel-l first name last name
     

     Memorial Sloan Kettering Cancer Center offers a "must read' guide.
     

     Kansas City Cancer Information Project Home Page This project empowers patients to be their own advocates
     

    The Turning Point, a place where KC area residents, families, and friends can find support and education when faced with cancer.

    A survivor led advocacy organization dedicated to assuring quality cancer care for all Americans

    Meetup is a very successful international system for linking you to patients and survivors who want to establish local groups.

    An excellent resource promoting patient centered advocacy for successful management of your disease.


    Disclaimer:  This site was designed as a result of personal experience and is offered for educational purposes only. It is not engaged in rendering medical advice. The information offered here should not be used for diagnosis or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.

    Page Updated