Suspected Toenail Melanoma

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3/7/2012 3:56pm
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Replies: 21

So went to the dermatologist yesterday for a black mole looking spot under my nail.  Long story short thought it was a bruise, had it since 2008, always had nail polish over it and didn't pay any attention to it.  I am having surgery and biopsy on Friday and I am in disbelief of this whole situtation. I never even knew this existed.  I had been to the derm before to have moles removed, all the while this was on my toe and I wasn't paying attention to it.  Anyways I was wondering if there are any stories of of others who have this.  I am 35 yr old white female and it looks as if this is pretty rare for my demographic. I am trying to stay away from studies I am reading because I have read the 5 year survival rate was only 40%  in subungal melanomas on the toes. Any insights? Thanks in advance :)

oh dear... you must be terrified...

i am no expert.. and do not have melanoma.. though my daughter is waiting for results on a suspicious mole...

it seems to me.. that if this has been there for 3 yrs or more.. ??? how could it be dangerous.. ???

good luck.. prayers and hugs as well..

 

michele

momof4 - (3/8/2012 - 7:36am)

Thanks Michele and best of luck to your daughter :)

 

My father had melanoma under his toe nail for many, many years -- certanly more than 3 years --  and it was very very thick.  When his toe was removed, the doctors were amazed that the melanoma had not spread and no further treatment was needed, so don't give up hope!  He eventually got a second primary on the same foot, which was not so successfully treated.  This means you have to be vigilant to check for additional primaries, since this is an unusual melanoma for white people, but don't give up hope!  You can beat this!

Best wishes to you,

Ellen - dads daughter

momof4 - (3/8/2012 - 7:42am)

Thank you so much for your response.  I am sorry about your father.  I appreciate you sharing his story with me and you have no idea how incredible that sounds to me that his initial melanoma had not spread.  I will never give up hope especially since I have a 5, 4, 2 & 1 year old at home that need me so much.  This waiting game (as I know almost everyone on here had gone through one way or another) is just brutal.

Thanks again,

Sarah

Linny - (3/8/2012 - 8:03am)

You're wise to stay away from reading any studies because you don't need that additional stress right now. 

With regard to any statistics you've read, remember that they were based on data that were compiled  several years ago. In the meantime, doctors have found more effective treatment protocols against various cancers so those same statistics may not be as dire as they were at the time they were compiled. Someone here has a great tagline under their signature that states something to the effect that they are not a statistic, but an individual.

You're doing the right thing by having this removed and biopsied. I pray it winds up being nothing.

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

momof4 - (3/8/2012 - 10:50am)

I never thought about how much has changed since these studies.  I looked at the one I was refering to in particular and it was from 1992-2004.  Thats a long time ago.  Thanks for pointed this out!

NYKaren - (3/8/2012 - 8:35am)

Hi,
I too hope it's nothing, but if it is melanoma, do not despair. There are several new treatments available. If I listened to the studies on the Internet, I would have been dead 6months ago!
IF it is mel, make sure you are seen at a melanoma center of excellence. If necessary, people here will be happy to suggest centers based on your location.
all the best and let us know,
karen

Don't Stop Believing

momof4 - (3/8/2012 - 10:54am)

From what I understand the biopsy is to give us more information about the melanoma.  Not whether or not it is melanoma.  Maybe there is still a slight chance its not even it?  I guess I will know more next week. This is all so crazy.  I looked in my area and do have a melanoma center of excellence. Thank you!

Linny - (3/8/2012 - 12:30pm)

I guess that logically speaking, it may still be nothing but your doc can't tell you that or whether it's melanoma or whether it's something else until he/she has the biopsy results in hand.

The waiting definitely is hard. Hang in there.

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

NYKaren - (3/8/2012 - 2:04pm)

Absolutely. Usually doctors don't want us to worry until it's time to worry. It's not melanoma until the biopsy results are in.
I had absolutely no clue until my doc called me in to her office to "check the stitches".

Don't Stop Believing

I will say that you are doing the correct thing in learning as you are waiting for getting accurate results as to what the problem actually is. Just get the possible tumor checked out as soon as possible. The problem with studies is that while often very true for a large group of people, they are not accurate predictors of individual cases. Going by studies, I don't have to worry about getting melanoma. The pathology reports on my removed tumors show otherwise. When I went to stage IV, 9 months after my initial diagnosis in May 2006 (After being told for 3 1/2 years that I had no serious problem) I was told that the statistics showed that I had a 50% chance of being dead within 6 months and less than a 5% chance of being alive thru the 5 to ten year range.. Yes, you are correct to be worried, just be vigilant, but do not be paranoid. Most melanoma's on the heals, soles, palms, and under the finger and toe nails are of the Acral Lentiginous Melanoma (ALM) variety. (effectively there are at least a hundred different melanomas.) ALM, like Mucosal Melanoma and Melanoma on non-chronically sun damaged locations are likely to contain an oncoprotein and DNA tumor mutation known as c-kit. These melanomas are known to be quite deadly. The main reason they are so deadly is because they have usually been ignored until they have spread (metastasized). The earlier any melanoma is identified, the higher the probability of long term survival. Stage one group of patients have a probability of over 95% of having no further problems. Read http://skincancer.about.com/b/2008/08/05/achilles-heel-of-metastatic-mel... for a review of the first peer reviewed article published by one Oncologist on one patient (2008). At that time and still through the present, Gleevec has not been FDA approved for Melanoma, though it is FDA approved for three other types of cancer that may also contain the C-kit. After IL-2 worked for 20 months, then stopped being effective for me, I talked with my Melanoma team at the UVA cancer center and at my request they started me, with again wildly growing tumors on Imatinib Mesylate (Gleevec). That was in March 2009. There has since been several clinical trials for this first targeted cancer chemo drug. I have not said the above to to push you into paranoia, but to say that education of this many faced disease is very important for survival. I have not been NED (No Evidence of Disease on CT/X-Ray/PET SCANS scans) since I was told I was at stage IV. That was in Feb 2007, I am still here. i am still learning and working the problem as is my friend Charley who has been a non-NED Stage IV melanoma person for 15 years now.

     If your black spot does turn out to be melanoma and contains c-kit 9and particulrly on exon 11 you to could be in a fairly good place.  Of course we will pray that it's not melanoma.  Just be aware that there are treatment possibilities beyond what is even currently approved.

I'm me, not a statistic. Praying to not be one for years yet.

momof4 - (3/8/2012 - 9:08pm)

I truly appreciate this information.  I had read a little about c-kits but wasn't sure what it was all about.  You response has provided me with some much needed clarity on this.  Knowledge doesn't make me paranoid, ignorance does. I know there is so much of this I won't be able to control but the things that I can control I want to be prepared.  I know as soon as I get my results I will need all the resourses I can get and I am so grateful for this support system. Thank you for taking the time to share this with me and I wish you all the best!

momof4 - (3/9/2012 - 12:31pm)

So I had a punch biopsy today and it seems most of the area was in the nail plate only a little bit on the nail bed.  This seems to be much more promising than before but still need to get the results to know what is really going on.  Doesn't provide much explanation except if it isn't ALM than maybe I injured my nail in a similar area than as before.  If it is something atleast it doesn't seem to be very deep. I feel more confused than ever on this. Now the wait.

momof4 - (3/9/2012 - 2:18pm)

I am not sure how to edit my reply, but I worded it incorrectly.  Most of the the black spot was removed with the nail plate not in the nail plate. 

Am I correct in understanding that the toe nail was removed and that the black spot was in the tissue under the nail?   There can be non-melanoma reasons for a black spot both i a nai and in the tissue beneath a nail.  i had a black spot that I thought was under a fingernail.  When I scraped the fingernail with my pocket knife,several months ago what ever the black stuff was it was in the middle of the nail, top was regular nail material.   Snowed the heck out of me. I had been concerned that it was under the nail. Fingernail has grown back complete with no lingering effects.  Am waiting for your patholgy report.    

Waiting and wondering,  So much F-U-n?

I'm me, not a statistic. Praying to not be one for years yet.

momof4 - (3/10/2012 - 9:46pm)

Thats what I understood.  He said something like "Most of it came out with the nail plate.  I only had to cut out a small piece. Hopefully we have enough samples to determine what this is." That was not exact but what I remember.  I had to ask the nurse practitioner to repeat the care instructions twice because I couldn't concentrate on what she was telling me.  Thankfully my husband was there to be a second set of ears.  The hole from the punch biopsy is pretty good size hole but evenso we felt like it was good news it hadn't grown very deep.  The dermatologist's demeaner changed a little after the procedure.  I am not sure he was relieved that it hadn't penetrated too deep or that the punch biopsy was successful through the nail.  He seemed a little apprehensive beforehand.  Not sure he had ever done one before. I can't find anything else that could fit this considering it has been there over 3 years.  I just keep racking my brain thinking maybe I hurt my nail, it healed and then I hurt it again in around the same spot but that just doesn't make any sense either. It doesn't fit any fungus descriptions either.   If it is melanoma the fact it hadn't penetrated far in the skin would seem like it hadn't metastatized yet but could that really be the case years later? Yes the wait sucks, but your replies help. Thanks :)

Linny - (3/11/2012 - 10:32am)

A relaxed demeanor is definitely better than one where the doctor is stressed and struggling with how to explain something to you. Regardless of the outcome, it's good that you had it removed.

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

momof4 - (3/16/2012 - 3:07pm)

I just received the pathology results and it was just blood under my nail!  I guess I injured my nail in the same vicinity as I did several years ago and didn't realize it.  Its all very crazy but I guess anything can happen.  I want to thank everybody who repsonded to me.  I really appreciate all the replies while I was waiting for my results.  I also want to finish this post for anyone else who is in the same situation and is looking for answers like I was.  This post has a lot of great information on it for anyone who things they may have a subungual melanoma and as someone pointed out earlier you don't actually have melanoma until the pathology report confirms it.  I was certain I did and I was wrong but in the meantime it was very helpful to be as informed as possible.  Thanks again :)   

YEP, we worry, often more than necessary!  So very glad that you learned thngs and that you posted to both let us know your results and to help others that may be in a similiar situation. 

    Worry can be a good driving force to help us get things done.  Amazing what knowldge can then do to get us reay to go either way.  Isn't the knowledge that this was a non-sserious worry great to find out? 

so glad for you.

I'm me, not a statistic. Praying to not be one for years yet.

Linny - (3/19/2012 - 4:15pm)

What fantastic news! Now go out and celebrate. cool

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

Anonymous - (10/27/2013 - 6:55pm)

hi can i ask the color? im also scared can i have an email so i can send photos pls