MIF Staffer Faces Melanoma

For 8 years, I have been managing the largest melanoma awareness event.  Melanoma International Foundation or MIF, brings over 1500 people together to support, encourage and honor loved ones. Our free screening has most likely found melanoma early when it is curable. I have listened to the awards ceremony for all these years, hearing the stories of courage, and of sadness. I walk away from the event each year with a full heart knowing that MIF has brought these families together and we are making a difference.   I have no medical background, I am not involved in the patient navigation, I barely knew what melanoma was when I started with the foundation.  But, apparently I picked up a few important things over the past 8 years.

And so the words from my husband on the phone unnerved me “I got the biopsy results. That spot you saw is melanoma.”  Since in his 20’s my husband has had numerous spots looked over and biopsied. Sometimes, it is nothing. Sometimes, it is basal cell. No big concern.  This one spot looked different. This one spot, I told him, had changed.  I see that neck every day… it looked different.  “Please go get it checked”, I said. He insisted the doc had seen it every time and said he is not concerned. Months later, he had a tiny spot in his ear bothering him, so my husband decided to make an appointment. “Please,” I urged, “have them look at the spot on your neck too.” He sighed, “I will”.

This appointment Zack scheduled was with a different doctor. This doctor saw the spot on his neck and immediately was concerned.  1 week later he is reading the biopsy results saying it is malignant melanoma .4 Breslow level.

Well, what does that mean?  How much of a concern, what do we do?  I took a deep breath.

We have the best resource at our disposal. So I picked up the phone and sent a text to Catherine our president/founder, and navigator, “Zack has melanoma”.  Within minutes she is telling me what information to pay attention to:  who did the pathology? What is this number of the depth? And explained the details of what to expect. She said “tell me the doctor’s plan and we will do this together. Everything will be OK.”

Luckily, Zack’s melanoma was caught early and after removing (a rather large) area from his neck, he is fine and that is all the treatment needed. He is very fortunate.

We are patient advocates. We navigate you through your melanoma diagnosis. I have said that a thousand times to those who ask what MIF does. I know what it means, I know what Catherine does. I never thought I would have to utilize it, and until I did, I never realized how important the foundation really is. I think I never fully understood the questions we answer, the support we give, the fear that we calm.

Trust your gut, if something seems off, get it checked! Listen to those who see you every day, if something is different get it checked! Do not be afraid to see a different doctor. When you do not understand something, look for answers from a valid source.

Yes, I work for MIF; I have a direct line to Catherine. But so do you! Catherine sits every day reading the forum, answering the phone and helping patients navigate melanoma. She is, very literally, a phone call away to anyone.  The reassurance, support, advice and comfort, are just a phone call or email away.

2 responses to “MIF Staffer Faces Melanoma”

  1. Denise L Schwartz says:

    Alison,

    I just read your story and immediately related. For many years, I asked my husband to get a skin concern on his head checked with the dermatologist, never thinking that I would have been the one to end up with scalp melanoma (diagnosed in 2004).

    As you know, early diagnosis is imperative. I credit my hair dresser for finding my melanoma. At the time, I felt lost and unknowledgeable about melanoma. It was about a year later that I became aware of Catherine because of a newspaper article. She was so helpful to me, which is why I am committed to MIF.

    Reading the MIF teams’ stories each year reminds me of how lucky I am to be alive. I am continually shocked by the number of young people who are diagnosed at a later stage. Hence, the importance of advocacy and awareness for others.

    Thank you for sharing your very personal story with us. I suspect that it will have a direct impact on saving someone from waiting too long to have a skin concern diagnosed.

    Best wishes to your husband, you and your family! God bless.

  2. Alison Taylor Alison Taylor says:

    Denise,
    Early detection is definitely key! If there is ever a spot that you are unsure of, or even if you think it is fine, just get it checked. My husband was very fortunate to have his melanoma caught early. We hope that sharing stories like this will help spread awareness and the importance of having your skin examined regularly. Be sun safe!

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