Subungual Melanoma questions and help

Posted By
Lyric17
8/9/2014 6:16am
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Replies: 38

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

Here are Flickr links to two photos of my finger

https://www.flickr.com/photos/126059190@N08/14865885392/

 

https://www.flickr.com/photos/126059190@N08/14863768094/

Hi Lyric,

I had a similar condition, but not under a nail, and not on my hand...it was on my heel. Like you, I mistook the brown streak on my body to be nothing. I thought I had stepped on some grease in my garage. Unfortunately by the time I realized it was something sinister, it had progressed to a stage 2A level. I have since been treated and have been NED for over four years (no evidence of disease).

I wasn't able to open the photo links from my iPad, but what you have described sounds very, VERY suspicious. You need to be your best advocate...meaning that you need to push your healthcare providers for the fastest and most effective diagnostic and treatment efforts that they can provide. 

While you are going through this...try to focus on the positive. It doesn't do any good to think of "what if" scenarios. That just gets your stress level up, which doesn't help your body's natural healing capability.

If you do have malignant melanoma, it is survivable, but the best thing you can do for yourself is to be treated as early as possible. Time can be your best friend or your worst enemy...when it comes to the big C. 

I wish you all the best!

Keep us posted on your progress.

Take care,

Mark from California

Check out ny posts. My husband was diagnosed with subungal melanoma. He waited way too long for diagnosis so I am glad you are taking charge now. We are in California also

I just finished going through your post and I'm sorry to read what you've been going through. I'm praying for the best and trying not to worry. I found the streak on my finger about a little over a year ago, is this to long of a wait? I know no one knows just wondering what you may think. How long would a person have to have put this off to spread this bad? Like I said I've had this for a little over a year, do you think I could have waited to long? Not that your a doctor but just your opinion. 

Thank you Mike :) your words helped bring my soul up :)

Sorry I meant Mark :)

I've had this line on my left hand's thumb for years and it has never changed, might have gotten a bit darker if anything. But now MY BIG TOE HAS SOMETHING TOO and I'm concerned!  

Should I get it look at? Thx so much 

Pictures here: 

 

https://flic.kr/p/TVkF4u

I've had this line on my left hand's thumb for years and it has never changed, might have gotten a bit darker if anything. But now MY BIG TOE HAS SOMETHING TOO and I'm concerned!  

Should I get it look at? Thx so much 

Pictures here: 

 

https://flic.kr/p/TVkF4u

Check out
Acral-lentiginous melanoma | Primary Care Dermatology ...

Jan 9, 2012 - Acral-lentiginous melanoma is a type of melanoma characterised by its site of ... acral-lentiginous melanoma (including subungual melanoma).

What is acral lentiginous melanoma ?

Acral lentiginous melanoma is a form of melanoma characterised by its site of origin: palm, sole, or beneath the nail (subungual melanoma). It is more common on feet than on hands. It can arise de novo in normal-appearing skin, or it can develop within an existing melanocytic naevus (mole).

You may find more info by looking up  "Acral lentigimous melanoma."

It should be checked for having the C-kit oncoprotein overexpression and if posittive the c-kit DNA mutation test should be done.

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

i have been essentially stable on Gleevec a c-kit targeted chemo for over 5 years now and I went to the Stage Iv level in Feb 2007 after being mis-diagnosed by my GP
 for 3 1/2 years.

 

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

http://www.ncbi.nlm.nih.gov/pubmed/10642684

The most salient features of subungual melanoma can be summarized according to the newly devised criteria that may be categorized under the first letters of the alphabet, namely ABCDEF of subungual melanoma. In this system A stands for a ge (peak incidence being in the 5th to 7th decades of life and African Americans, Asians, and native Americans in whom subungual melanoma accounts for up to one third of all melanoma cases. B stands for brown to black b and with breadth of 3 mm or more and variegated borders. C stands for change in the nail band or lack of change in the nail morphology despite, presumably, adequate treatment. D stands for the digit most commonly involved; E stands for extension of the pigment onto the proximal and/or lateral nailfold (ie, Hutchinson's sign); and F stands for family or personal history of dysplastic nevus or melanoma.

CONCLUSION:

Although each letter of the alphabet of subungual melanoma is important, one must use all the letters together to improve early detection and thus survival of subungual melanoma. Still, as with cutaneous melanoma, the absolute diagnosis of subungual melanoma is made by means of a biopsy.

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

Sorry to hear about your misdiagnosis. Pray and wish the best for you :)

Thank you Jerry, I'll for sure try searching under those words :)

Btw, as stated previously my dermatologist scheduled me for the next biopsy in a month from tomorrow when they called. Is this OK? I feel it's a little far out for dealing with this . I'm not sure if the dermatologist wanted to let my finger heal from the previous biopsy or if they are booked or what. I feel like kind of like I'm not being taken care of but then again I don't want to jump to conclusions. What do you guys think?

 

Hi Lyric,

I was able to view the photos you posted.

If I were you I would see if my insurance would allow me to go directly to a cancer center for a second biopsy and second opinion. I cannot imagine why the first biopsy was inconclusive, but It seems it was some kind of human error, which is why they are planning on having the next procedure done by the head Dermatologist. 

if this does turn out to be melanoma, the dermatologist will just refer you to a cancer center where you will have to schedule more appointments and waste more time waiting. Given the inconclusive first biopsy and very suspicious presentation...you should take matters into your own hands and take that next step yourself.

With my insurance, I had to first go to my primary care doctor, then get referred to a dermatologist, then get referred to a cancer center...so from my initial appointment to my actual treatment, two months had elapsed. 

Your next step is a call to your insurance company to get the authorization to take the step to be seen by a melanoma specialist at a cancer center for a second biopsy and second opinion. If they authorize it, they can help you select where you should be seen. Hopefully they can get you in for an office visit in less than a month. Be sure to tell them that your first appointment is for a second biopsy, otherwise they might make you schedule another appointment after the initial appointment...which is just more time that you don't want to wait.

Good luck Lyric (great name BTW).

Keep us posted on your progress.

Mark from California

 

My husband waited to go to the doctor for at least six months while his thumb was totally inflamed, bleeding, and painful. He is very stubborn. Part of the delay was that he had hit his thumb with a hammer( something he had done numerous times over the years). So I am glad you are taking care of it now. He does not have actual melanoma, but has a non description melanoma. He is braf  and c kit negative. I agree that you should advocate for an earlier biopsy and try to get to a melanoma specialist no matter what the path results are. Good luck and keep us posted. 

Thankfully I've had no bleeding, color change, pain or anything. 

Tomorrow I'm calling the dermatologist to push for a sooner date for the biopsy and if no luck I'll ask to referred to a cancer treatment place for the biopsy.

Thanks :)

I think with my insurance I have to have a referral as well. Tomorrow I'm calling the dermatologist to push for a sooner date. It worries me that they would push the next biopsy that far off. It's like they have no idea what hey are dealing with because if they did they wouldn't put it off another month. I'm saying this because off how quickly cancers like this can spread and that's if it is malignant or cancer period. 

My dermatologist seems to act pretty confident that it's more than likely not cancerous and that things will be good. My fiance said the dermatologist said she had dealt with the same condition before and it's pretty much always benign if cancer and otherwise nothing big that can't be treated. I don't remember the dermatologist saying this but maybe it's because I was so nervous and in shock at the moment. I'm just wondering if waiting another month will really hurt me.

Thanks for the comment on my name :) I get lots of comment and smiles. Lol

Btw I'm very interested in looking into Rick Simpson oil if it turns out bad. I've heard about mistletoe but it's only in trials at the moment unless a person wants to fly to Europe. I'd fly to Europe but don't want to unless it's really the fix.

But I'm very interested in trying the Rick Simpson oil and my fiance has already mentioned if it comes down to it we could possibly move to Colorado. 

This place does mistletoe therapy in America. http://www.steinerhealth.org/programs/cancer-treatment/

Update: Today I called the dermatologist to get a better date for my biopsy. The nurse on the phone said well your in luck someone just called canceling their appointment for tomorrow at 3:45, which is perfect it's right as I get off work. :)

But as I'm trying to talk with the nurse she keeps cutting me off. I took that being rude but what do I know. Anyways the nurse says sorry what were you trying to say. I said I'm just trying to get my biopsy earlier because I'm afraid it's possible it could be cancer and I've reached out for advice from others with this information and they've advised I try and seek a sooner date as well since you never know.The nurse says I told you already it's not cancer. I said what do you mean? She said it's melanonychia, it's melan a under the nail but not cancer. I said did my biopsy show it wasn't cancer? She said yes but we want a deeper biopsy. So I'm confused why they would want a second biopsy if it's not cancer and if they are really sure here. She said I would see the head dermotologist tomorrow who would explain things better and look into it. She seeing him should make you feel better.

What do you guys think? It's not cancer she said but melanonychia with melanon but they want a deeper biopsy. 

I think you just have to wait to talk to the derm.  He will be better at giving you the details than we can.  He's probably talked with the pathologist.   Getting a larger sample doesn't mean much except they are taking precautions. 

Lyric,

I would suggest asking for a copy of the pathology report from your first biopsy.  This will be very important, especially if you go to a cancer center.  Always, always get copies of the original reports.  Another plus is that you can post the report here and that will give folks more to work with.

Strength and Courage,

Susan

Hi everyone, so today I had my appointment with the head dermatologist. Right away the assistant explained to me they would be doing the biopsy and asked and answered any questions I had. The assistant set me up and cleaned my hand to be operated on. Next the head dermatologist walks in says hi and marks the spot he plans on taking the biopsy with marker. Tells the assistant how much lidocaine to give me and what size biopsy to get ready for. This time they make me sign off a waver because of the size and possible chances of infection, bleeding - I guess standard protocol. Next the dermatologist walks in explains more than likely my nail in that area may never grow back or grow back irregular. I said I don't care I'm not entering a beauty contest and he can take my whole finger if he'd like. Lol. I asked what was wrong with the first biopsy and if it showed cancer. He said it showed no cancer but the pathologist asked for a deeper biopsy with more skin and area to make sure. So the dermatologist was straight forward, not compassionate but joked around a bit. Lol. When he finished a had the size of a head of an pencil eraser in my nail bed, into the nail and into the skin. He had to use to burning tool thingy to close it up and stop the bleeding. So it was all over and he stood up and said that's gonna hurt really bad. He told the assistant besides antibiotics to call in a percription for Vicodin for pain and Valium for trouble sleeping. I asked if it were nesisary because I don't like talking drugs and said oh your gonna need it trust me. I said ok. Next I was bandaged up, given antibiotics, told how to keep care of it, my next appointment to check out the healing and asked if I had questions. 

And here I am and trust me he was right, it's painful. One time I agree on taking pain killers. Lol.

I'm glad they did the biopsy today instead of a month away :)

Praying it turns out not cancerous. 

https://flic.kr/p/oqzpYK

Photo of biopsy before being wrapped up. The black is from burning the area with the tool the dermatologist uses.

Hi Lyric,

I am so glad for you that they could get this done for you so quickly. Either way it turns out, this puts you on a faster path to getting you back to living your life to the fullest. 

You are very brave...how you faced this procedure...you can certainly handle anything that comes your way.

Best of luck for the most positive outcome!

Mark from California

Thank you very much Mark for the very kind words :) I'll keep everyone updated when results come in. 

Hi Lyric, Can you please tell me your results

 

Hi Lyric! How were the results? Also curious as to how many days you were in pain after the second procedure? Did they remove the majority of the mole? 

 

Thanks! Tina

Hi Lyric,

I'm at the very beginning of the same story as yours, but I am in the UK, at the mercy of the British National Health Service. I do hope your progress was good. It's about a year ago the last time you posted, you were waiting for the results of the deeper biopsy. What happened then? I'd really like to know. (And Lyric is a lovely name btw)

I'm about to see the Consultant today, and as you can imagine, I'm worried!

Ruth

Anonymous - (1/7/2015 - 4:37pm)

Dear all,

I also have some sort of suspicious bruise under my little toenail that looked a lot like subungal melanoma. I had it biopsied (the doctor basically just pulled out the nail) a couple of weeks ago and I am still waiting for the actual results but when I called the doctor's office they told me that everything was okay. I can still clearly see the bruise now on the raw toe...is that normal? Should I get another biopsy now done by a real oncologist/dermatologist? 

Thank you for your help

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