Wednesday, April 4, 2012

"They Never Told Us Anything!"

I read string of FB comments about a friend of a friend who commented that they were too pale and needed to tan for the summer.  This person also stated that her mom “has melanoma real bad” but she has to be tan to go to a wedding.  The initial poster on FB asked what others would have said in response.  Some commented that perhaps the daughter (or even the mother) simply didn’t understand the cause and real details of melanoma.  A few days ago, I would have thought it unbelievable that someone with melanoma wouldn’t understand the dangers.  But now I can completely relate.

I talked with my sister-in-law the other day…Jeff’s wife.  We hadn’t talked in a long while, and even then our conversations were mostly emotional venting about my brother’s passing.  His death has been hard on all of us, but particularly hard on his wife.  Anyhow, our conversation this past weekend was a little bit more normal and chit-chatty.  Since we both seemed stronger to tackle a deeper discussion, I asked her a little about Jeff’s initial melanoma diagnosis in 2004.

My family isn’t the best at sharing personal or “bad” news.  And my worst personal flaw is maintaining close contact with anyone.  So the information I had about Jeff’s melanoma diagnosis in 2004 is sketchy at best.  All I recall is that he said he, “had melanoma on his back and they were going to cut it out.”  Later on, he mentioned that the surgery went well…”it was over before I realized it.”  That was pretty much all I knew about it.  With such info, I pretty much figured melanoma could “just be cut out.  Knowing what I know now, I asked my sister-in-law exactly what the diagnosis was back then.  Was he Stage 1?  Stage 2?  What other procedures were done?  The answer stunned me.

They were told he had malignant melanoma, but no stage was ever mentioned.  In fact, she never used the word “oncologist” at all.  She stated that a plastic surgeon performed the removal and the melanoma as pronounced fully removed.  Case closed.  Jeff was to visit the dermatologist every 6 months and that was it.  No scans.  No MRIs.  Nothing.

When the melanoma came back (with apparently no resistance at all) in 2010, it appeared on his face.  A “chemo cream” was prescribed and that was that.  Of course, in August 2010, it was discovered to be riddled in his brain and lungs.

My sister-in-law expressed anger.  “They never told us anything!  We had no idea that melanoma could spread to other organs!  Jeff was smart enough to now not to tan and was very careful with the sun, but we were never told to do any follow-up procedures!  She went on to tell me that when they visited MD Anderson, Dr. Hwu expressed total shock at the lack of common protocol followed.  

Based on what my sis-in-law shared, they just didn’t know.  And this scenario reminds me of another blog I read recently which discussed the difference between awareness and education.  Jeff and his wife were “aware” of melanoma, but they weren’t properly educated about it.

Let this serve as a reminder…to you and to the friend of a friend…that melanoma is a killer and it’s so much more than skin cancer.  Making people aware is important…making them understand is critical.


  1. Welcome to Canada... that is exactly the process here. Mine was cut out and I requested my lymph nodes be checked... I requested that I get some scans... NOPE! I asked to see an oncologist so I would know what to be aware of so if it spread to my organs I would hopefully know sooner. NOPE! I was not even going to be checked by a derm... just the plastic surgeon until I really put my foot down with my GP. It drives me crazy with worry but there is nothing I can do but hope that the plastic surgeon really did get it all....

    1. Great post, Al!
      @Our! You will be held in prayer. Are you on Facebook? Connect with me through Melanoma Prayer Center if you want to and share your story if you feel comfortable. There are folks in Canada who may be able to offer you some help on maneuvering the Canadian system. Prayers for you friend (I'm stage 3b myself).

  2. Al, why is my above reply in gray font and a black box? I hope it's readable.

  3. Great post, Al!
    @Our! You will be held in prayer. Are you on Facebook? Connect with me through Melanoma Prayer Center if you want to and share your story if you feel comfortable. There are folks in Canada who may be able to offer you some help on maneuvering the Canadian system. Prayers for you friend (I'm stage 3b myself).

    (This is what's in the black box with gray font)

  4. I was diagnosed over the phone last week with melanoma from my dermatologist after having a mole removed a week prior. I have a medical background and knew which questions to ask the next day. After the doctor told me what was going to happen next (surgery, etc), I asked him what stage I was in. He was BLOWN AWAY! He said I was the only patient to ever ask him that!!! I couldn't believe it! I am currently at Stage 1 and will have surgery next week with the plastic surgeon and it will be sent to pathology for further tests. Is there anything else I should be asking for?

  5. In 2002, my husband had an in-situ melanoma removed from his left temple (clean margins by the way) by a plastic surgeon after the initial biopsy with a family doctor. He was simply told by the surgeon to just see a dermatologist every 6-12 months for a mole check. My husband did this religiously and often had moles removed on an office visit to find out later they were simply dysplastic nevi or moles. 14 months ago, he came home from a college hoops game with a terrible headache and in an altered mental status. Hours later we were told in the ER that he had stage 4 malignant melanoma (4 brain tumors, lung mass, liver mass) and had 6-12 months to live. He lived 11 months to the day. There wouldn't have been a doctor or insurance company on the face of this earth to have recommended or paid for an MRI/CT scan or needle biopsies for an in-situ melanoma but my husband did exactly what they told him to do (dermatologist visits) and what did it get him? Nothing, except to meet the phenomenal people at The Mayo Clinic in Minnesota where he had the BRAF test and showed the mutation for it. The drug Zelboraf kept him pain free for his last 3 months. What a sheer waste of a beautiful, kind, patient and intelligent life.