New - Here we go...

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8/19/2014 3:39pm
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Replies: 4

Sorry if this is a bit lengthy.

I had a mole on my arm for as long as I can remember but over the last few months people have been commenting on it. It has always been raised and multicolored. I went to a GP and he made it sound like there was nothing to be concerned about but that I should go to a dermatologist because it was suspicious. I went to the dermatologist and the doctor definitely didn't help me feel less nervous.

I told her all the needed info (burns, family history, how long have I had the mole, are there others) and she took a look. The first thing out of her mouth is "This is bad" and then she left the room to grab another doctor, not saying anything to me. I think she realized how upset she made me when she came back in with the other doctor and found me crying. I'm not an overly emotional person so it takes a lot to get me to cry. When I went to their office today I figured I would just be getting the mole removed to be safe, not be told that they believe it's melanoma and I need to get a biopsy. I was not mentally prepared for that conversation.

I got a incisional biopsy and heard from them one week later. The main tests were inconclusive. The mole was deep but since it is something I've had from a very early age that is not uncommon. It was strange because they were seeing atypical cells with normal cells but nothing that screamed melanoma, it was just something they were leaning to. The doctor said that she was sending out for 'special testing'  to get a firm diagnosis as they can look for specific things in the tests to say one way or another.

I just got a call from the doctor saying that it is "kinda bad news." The special testing results came back negative but since the cells were so atypical they are diagnosing it as melanoma and want me do a sentinel node biopsy and a wide excision. They said even if the mole wasn't melanoma that the atypical cells can still travel to my lymph nodes and they were a concern enough that I don't want it in my body. She said it's possible that this mole would have never caused problems for me or it could be very serious.

I really am at a loss on how to feel. On one side, I guess the special tests look for specific markers all came back negative, which I think is a good thing? It sounds good but she kept saying "We are still diagnosing it as melanoma because they are so atypical." I'm picking up my pathology report this afternoon to see if I can understand any of it. I'll have to do the dreaded Google to see what I should look for. I'm trying to be hopeful and think positively but I'm just so overwhelmed. I had hoped this call would give me some closure, either I have cancer or I don't, but the doctors are still unsure but are playing it safe. I want to just accept that I do but with the uncertainty on their end it leaves me with hope that this is just a nightmare I'm going to wake up from.

Has this happened to anyone else?

casagrayson - (8/20/2014 - 12:54am)

DON'T GOOGLE!  Seriously, you don't want to do that.  Post the entire pathology report here and let these experts give you some feedback.  There is so much old information on the internet that you will make yourself unnecessarily nervous!

Strength and Courage,

Susan

SABKLYN - (8/20/2014 - 1:10pm)

Hi,

I had pretty much the same experience.  I had a small mole 2/3 the way on the back of my left leg near my ankle.  My wife, who is a derm nurse brought me to her office to have it excised.  At the time, no one was overly alarmed. In fact, the doctor suggested I might want to wait as it looked totally benign.  I decided since I was there I would have a punch biopsy done.  I was told I would have results in a week.  10 days past and still no results.  The derm pathologist could not determine if it was melanoma.  There was severe atypical but not enough to make a definitive call.  They sent my tissue sample to Dr. Barnhill at UCLA who (I guess a little more expert at this?), couldn't make a definitive call either.  It was suggested I have a sentinel node biopsy which I decided was a good idea.  Well, i did and had two positive nodes.  I then elected to have a my CLND which found no more affected nodes. That was three years ago.  I was told that even though they could not make a definitive call, the best course of action was to treat it as melanoma.  I have had no other occurrences since then.  As my wife told me, there are several instances where a mole gets classified as indeterminate.  What course of action you take from there depends on the collection of other factors.  In my case, the operating theory was if it walks like a duck and quacks like a duck, let's treat it as a duck.

hope that helps and good luck!

kylez - (8/20/2014 - 1:26pm)

Much betterthan google, you could try (if you haven't) clicking on 'Understanding Melanoma' in the menu above.

cerabell18 - (8/21/2014 - 6:07pm)

Thanks everyone! I got the pathlogoy report and have a meeting with a Dr. at the Seattle Cancer Care Alliance next week. It sounds like they are going to do a wide excision and are considering a node biopsy. I'm really thankful this group is available so I can ask questions as I go and feel not so alone :)