Just Diagnosed

"Just Diagnosed With Melanoma... Now What ?"

(Adapted from the “How to make Good Choices from Bad Options” MRF ‘mini-symposium” talk)
Casey Culbertson, MD
Chair – Melanoma Research Foundation
Stage III Patient

Introduction

Of all of the various skin cancers, melanoma is known to be the most deadly if not caught in its earliest phases. Approximately 53,000 will be diagnosed with melanoma and 7,800 will die this year from melanoma.
If you are reading this, you have undergone a biopsy (either of a skin lesion or a lymph node) or have had other tests in which the diagnosis of melanoma is suspected or confirmed.

So what do you do if you have just been diagnosed with or are suspected of having melanoma ?

1st – take a breath… and read the following…

Casey’s Rules of Melanoma as a Disease

  1. You have been given a diagnosis – NOT a death sentence
  2. Melanoma survival statistics describe a ‘group’ of similar patients.. but they may have NOTHING to do with YOUR chance of survival
  3. n advance Stage melanoma, there is NO one “RIGHT” answer (or “BEST” treatment) option for your melanoma
  4. The BEST melanoma patient is an ACTIVE PARTICIPANT in his or her treatment (not a PASSIVE RECIPIENT)

The ‘phases’ that most melanoma patients seem to go through (in this author’s opinion) are: DISCOVERY, DIAGNOSIS and finally TREATMENT. These ‘phases’ very closely linked to physician visits when the information about melanoma diagnosis and treatment are shared with the patient. While superficial melanoma treatment is fairly straight forward, more advanced stages of melanoma (again in this author’s opinion) require more physician and patient interactions (“visits”) especially in the DIAGNOSIS and TREATMENT “phases”.

The following Question / Answer format will help you find the information you need about your diagnosis and treatment as well as provide you with links to important sites for more information on melanoma.

Important 1st Visit (Discovery Phase) Questions to ask your Physician:

  • Why do you think I have melanoma?
  • What is MY melanoma Stage ? (Has it been determined?)
  • Do I need more tests to determine MY Stage ?
  • If I need more tests – what tests are they ?

Possible Tests that you may undergo:

Simplified Staging Guide to Melanoma*

Stage 0 In situ melanoma
Stage I No ulceration (< 1mm depth)
Stage II 1- > 4 mm depth (with or without ulceration)
Stage III Lymph node involvement
Stage IV Distant mets to skin, subcutaneous or lymph nodes; or mets to any visceral Organs (lung / liver / brain / bone / etc)

* American Joint Committee on Cancer Staging System for Cutaneous Melanoma J Clin Oncol 2001; 19:3548-3636. Lippincott Williams & Wilkins.

Why do you need to know your melanoma Stage?

Important Tip #1

As it is most likely that you have been in some ‘shock’ given the discovery of melanoma, it is important to bring another person with you to take notes on what is said or suggested during this 2nd physician visit. These can then be reviewed after the visit.

Important 2nd Visit (Diagnosis Phase) Questions for your Physician

  1. What is MY Stage of melanoma ? (and what does that mean)
  2. Given my Stage of Melanoma, what are you recommending will my 1st treatment (or surgery ) be?
  3. Will my surgery / medical treatment be done here or at another center?

Simplified Melanoma Staging / Treatment Plan ChartStages of Melanoma Stages of Melanoma Treatment Plan(s)

Stage O (in situ) Excision
Stage I (primary < 1mm) Excision (Some centers will do CXR +/- lab work)
Stage II (deeper invasion) Excision + SNB ? * Adjuvant therapy
Stage III (LN involvement) * Excision ? * No therapy ? * Adjuvant therapy
Stage IV (Diffuse melanoma) * Depends on site(s) Involved ? * Surgery vs. Biochemo, ? * Radiation, gamma knife, etc

* Note that all the these therapies are somewhat controversial as to which is the “RIGHT” therapy for advanced stage melanoma patients.


Important Tip #2

Before starting any surgical or treatment plans (and ESPECIALLY in more advanced disease in which treatments maybe more controversial) – you need to understand your diagnosis and all the various options for your Stage of melanoma. In other words, before you undergo ANY treatment, you need to do YOUR homework and understand YOUR options before deciding with your physician (usually at a 3rd visit) what the plan for YOUR melanoma treatment will be.

How to approach and organize the information YOU obtain