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My Observations and Suggestions:

"HOW LONG HAVE YOU HAD THAT?  DO YOU KNOW WHAT MELANOMA IS?"

Those were the first words out of the mouth of Dr. G in March of 1997. Less than 6 weeks earlier, I had discovered  the "black fleck" under my bottom eyelashes. He performed a punch biopsy on the "purple raisin-like ulcerated lesion.  Two weeks later I received the phone call that would critically impact the rest of my life.

" I have bad news, Linda.  The biopsy reads Clarks Level II or III, Malignant Melanoma."  I would discover later that the biospy was fragmented and therefore the difficulty in precise diagnosis.

I immediately began the process to obtain a second and eventually a third opinion.  Weeks into the additional diagnostic testing and appointments with dermatologists, oncologists, opthamologists and surgeons, I met Dr. Z..  He held a specialty in ocular melanoma and during a pre-op exam, questioned the old spot on my cheek just inches from the eye lesion. He recommended a mapping and sampling on that lesion which also proved to be melanoma, assumedly the primary lesion.

Details of those months and a look at my life from childhood and overexposure to the sun, my challenges, my spirit and my life as a survivor and advocate today, may be read in my life story, "THE SKIN I'M IN."

I implore you to do research and educate yourself. Insist on timely and interactive appointments with your physicians.  Prepare for your appointments by compiling a list of questions and don't leave until you get the answers. Obtain at least a second opinion. Get copies of your records.They do belong to you. Do not assume that every appointment with your physician is recorded with detail. By requesting your records as you go, the chances of that critical step in your care being skipped, is less likely.  You must be assertive and aggressive in the managment of your case.  No one cares as much about the prolonging of your life as you do. I submit that in a perfect world there would be more responsible stewardship of our lives by physicians.

This site is my offering to those of you who may be beginning this journey. I wish you luck, skilled and compassionate physicians and especially perseverance and survivorship.


My initial biopsy was done in the dermatologist's office on the ulcerated purple raisin-like lesion that was under my bottom eyelashes, which closely resembles the photo above .  It was a punch type biopsy , the core sample was taken and stitches were in place in a matter of a few minutes. The sample was fragmented and therefore 3 pathologists gave similar but varying opinions on the diagnosis.

My attending dermatologist performed the second biopsy after my ocular melanoma specialist became concerned about a tan scattered freckle-like lesion on my cheek.  See an example of a smaller and less scattered "age spot" in the photo below.


The procedure is called a mapping and sampling biopsy. My dermatologist  performed 9 cuts around what was a lemon sized area only inches from the previously biopsied lesion.  It was done as an outpatient procedure in an operating room type setting. The target area was the "age spot" that  had been previously burned off without biopsy or words of warning.  Obviously, today that ranks as a potentially deadly error.  I encourage you to insist on biopsy of any suspicious lesion anywhere on your body. I personally would never have anything other than accurately diagnosed seborrhic keratosis burned off.

The Importance of self and clinical evaluation in early detection.
If your doctor also thinks the mole or marking looks unusual, a procedure known as a biopsy will be performed. To perform a biopsy, a local anesthetic will be injected under the skin to numb the area. The entire mole, or a small sample of the mole, will be removed and examined in a laboratory to determine if the mole is cancerous.

"Basal cell cancers make up 75% of all skin cancers. They often develop on the face and ears and are found more often among young people because of over exposure to the sun.
Squamous cell cancers are more agressive than basal cell and are more likely to invade the structures beneath the skin.
Melanoma, IF DIAGNOSED EARLY AND TOTALLY REMOVED is almost 100% cureable.  Once it advances and metastasizes (spreads to other parts of the body), it is hard to treat and can be deadly."
   Source: American Cancer Society

  STARToncology Lentigo maligna melanoma explained
Lentigo:  age spot; although there are documented cases of people in their early 30's with this.
Lentigo Maligna:  mm insitu.  The good thing about Lentigo Maligna is that it can stay in a radial growth phase (insitu) for a long period and sometimes get quite large before starting vertical growth and becoming invasive.
Lentigo Maligna Melanoma:  The correct term for a Lentigo Maligna that is no longer insitu and has started to invade. This is a variety of melanoma, such as superficial spreading, etc.  It's more common in the elderly and is associated with long term sun exposure. Some of the reading that I have done about Lentigo Maligna melanoma states that it invades in nodules.  It forms a nodule and while that nodule is invasive the rest of the lesion may be at a lesser Breslow or even insitu.
This makes it critical that the whole lesion be correctly removed for pathology.  Looking at one piece of it can't begin to tell you the whole story.  You have to have the whole thing.
This same article stated that once Lentigo Maligna melanoma forms a nodule and invades, while it would still be called Lentigo Maligna mm, it has in fact become a nodular melanoma, and should be treated with the same caution and concern that a diagnosis of nodular melanoma would bring."

Today I would get … no …. insist on a second opinion and demand a biopsy.  Just those two proactive exercises might have spared me not only lifelong physical and emotional issues but the devastating reality and attendant labels permanently attached by health insurance providers. A five-year survival of melanoma carries no importance when qualifying for health insurance.  I will always be considered high risk.


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.

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