OK….you’ve been diagnosed….now what?

Being diagnosed with melanoma usually means a calendar full of doctor’s appointments, tests and more tests and a flood of information being thrown at you with an array of words that you probably never figured you would have to know.  (We hope the glossary we have provided will be helpful and please feel free to send us any additions!)

Glossary of Terms Concerning Melanoma

Never be afraid to ask for second opinions and with each one be sure and discuss your concerns about having to live with melanoma. If you have two doctors that are equal on knowledge of diagnosis and treatment of melanoma…chose the one that you feel most comfortable with. 

Quality of Life issues are an important aspect of your diagnosis and treatment.  How will living with melanoma affect your social life? Will you be able to work? Just how advanced is my melanoma? Is there a chance for a cure?  If not, what are the stats for prolonged survival?

Make sure you understand the goal of the treatment option you have chosen.  Is it a cure…prolonged survival or only symptom management.  Knowing this will help you way the pros and cons of side effects.

We suggest that you take a friend or relative with you to each appointment or test.  Take lots of notes or even take a tape recorder.  This will assist on the relay of information to your family. 

Please know, that whether your diagnosis is clear or uncertain, we here at the “Billy Foundation” stand ready to assist you in anyway we can.  We are here for you!

Questions to ask your Doctor about Melanoma

• If there is only a suspicion that I have melanoma or if a skin lesion might be melanoma, what kind of biopsy should I have?

• After the biopsy what is my Clark's level and thickness of my melanoma?

• What type of a pathologist reviewed my biopsy? Was it a dermatopathologist?

• Do I need a second pathology opinion?

• What is my prognosis based on my tumor thickness.

• Now that I have the diagnosis of melanoma, should I have a sentinel node biopsy?

• How often should I be followed and by whom?

• How often should I see a dermatologist and how often an oncologist?

• What is my risk of a second primary?

• Do I have familial melanoma or the dysplastic nevus syndrome?

• How should I change my lifestyle and behavior, mine and that of my family?

• If I have a positive sentinel node biopsy where do I go from there? Do I need a lymph node dissection? If the lesion in only one sentinel node is tiny and that node has been removed is more to be done?

• What is my prognosis since I have positive nodes?

• Should I take adjuvant therapy and what type of adjuvant therapy is available to me?

• If I relapse in internal organs what treatment is available to me? Should I be in a clinical trial?

Click here for printer friendly version to take to your doctor

Special thanks to Dr. Evan Hersh, MD; Arizona Cancer Center for his valuable input