My 6yo has an atypical Spitz Nevus. Help!

Posted By
Mareglia
12/5/2018 9:52pm
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Replies: 3

My daughter’s biopsy came back today as a Spitz Nevus with mild atypia (apparently because it was slightly assymetrical). Pathologist is confident it is not a melanoma, but is on the fence about a WLE. Derm suggests getting it done at Boston Children’s with a pediatric plastic surgeon. Both the pathologist and derm do not think there would be any benefit to an SLNB. 

What would you do if it was your kid? I’m TERRIFIED of having this show up in her lymph nodes someday. I’ve read about a couple cases where a child died after having the Spitz removed and melanoma showed up in the lymph nodes years later. Derm says those cases must have been misdiagnosed from the start... 

Just don’t know how to get my head around this. 

It's terrifying to get a strange diagnosis and even more terrifying when it's your child. The best thing you can do is just that...the best you can do. You can't be pathologist, dermatologist, plastic surgeon, and mom all at once. Do your research, look at all the facts, and trust your gut. Don't base your decisions on the emotions, fear, or the one random thing you read online. If you don't trust the diagnosis, then you can have another pathologist take a look. Do the best you can with the information you have and believe in your decision!

Lauren

WithinMySkin

www.Withinmyskin.com

 

My 22 yr old daughter just had a junctional spitzoid biopsied with WLE.  Since my diagnosis of Stage 1b in May, they will be more inclined to remove anything "funny" from her due to genetics.  Please know that not all atypical moles become melanoma.  Yes, they carry a higher risk, but put it in perspective.  If the general poplulation carries a 2.6% lifetime risk of developing melanoma and an atypical mole  increases that risk by 3x's, you are looking at an increased risk of approximately 7.8%.  Its VERY hard when looking at the data on the internet to not think instant doom and gloom.  Especially when you are dealing with your child.  For the 1st three months after my diagnosis, then her atypical lesion...I was A HOT MESS.  Being a stage 1b my odds are around 92-95% of not seeing this ugly monster again...did I appreciate that...NO.  I concentrated on the 8-5% because it can happen.  I can get hit by a bus tomorrow too.

Per my oncologist who is on the national board that writes the protocol for melanoma diagnosing and treatment, atypicals/spitz can be hard to assess.  Our derm states she sees spitz in younger kids quite often.  To give you some peace of mind, get a 2nd opinion on the path report from an oncologist that is a melanoma specialist.  I can tell you I had my oncologist look at my daughter's..no shame at all.  The onc specialist can also give his opinion about a WLE and lymph nodes.  You must remember, per the current pathology, this is NOT cancer.  Its not even pre cancer...its a funky mole that might, maybe, could turn into something one day.  No one is going to approve a SLBN for an atypical non cancerous lesion.  No insurance company will cover it either....however, being your kid, I am sure you would pay out of pocket like I would if need be.  The procedure is invasive and painful and I feel your derm may be correct in stating what you saw on the internet may have been a misdiagnosis from the beginning.  The only thing I can offer in terms of "doing something" to ck those lymph nodes is to see if your dr will perform ultra sounds.  My oncologist does an ultra sound every 3 months of my lymph nodes at my groin and behind my knee (lesion was left calf).  He will do so for 3 yrs, then drop to every 6 months for the next 2 yrs.  BUT I had melanoma and the lesion was ulcerated so no problem getting the order and having insurance cover it.  Maybe you can check into that.  Its pain free, non-invasive and my oncologist said its a great alternative to the SLNB.   At minimum it will give you peace of mind.  Also, tell your derm you want skin cks every 6 months.  They will also ck those lymph nodes via physical examination.

I know this is very scary.  But take a breath and find comfort in the fact that this is not melanoma and odds are way in your favor that it will never be.  You have to find peace of mind to enjoy life with your child.  Have faith that you are in a good place and all can and will be ok.  Wishing you the best. 

 

Thanks for your replies! I feel a lot better today. Our derm has been amazing and spent two days calling everyone she could think of to gather the best information possible to answer all of my questions. She arranged a consult appointment for me Thursday with a pediatric plastic surgeon from Boston Children’s who comes up here to Maine once a month. Yesterday we sent the slides over to Dr. Mihm in Boston as well. I’ve read a number of articles written by him about Spitz Nevi and feel good about getting a second opinion from him. I feel like we’re in great hands. Trying to relax and put things into perspective.