- August 2, 2018 at 5:23 am
My 11 year old daughter had two moles removed last week and the dermatologist called and said she needs to be seen by the pediatric dermatologist for the mole that they removed on her shoulder (B). They said it looks to be a Spitz nevus and they are not melanoma but can be very similar on the biopsies so they said she needs to see the dermatologist at the Children’s hospital. I got a copy of the pathology report and it says:
A: -Melanocytic nevus with congenital pattern features, superficial.
B: -Combined Nevus, Inflamed
Comment: The lesion has features of a Spitz’s nevus and a conventional compound Melanocytic nevus. There are also numerous mononuclear cells around the Melanocytic nevus. This finding is compatible with halo phenomenon, but may or may not correspond to a clinical halo nevus.
It goes into further gross and microscopic descriptions but I’m wondering if anyone knows if this is a typical Spitz nevus or an Atypical Spitz? The local dermatologist just did a shave biopsy and she said the pediatric dermatologist may need to do more of a biopsy and testing. Does anyone have any experience with this and know if Spitz nevus and melanoma have similarities, how will they be certain that it is not melanoma? My dad had melanoma as a young adult so I am of course worried and want to make sure that I know what questions to ask and am prepared for what, if any tests they will do.
- August 4, 2018 at 2:06 pm
We just went through something similar with my 17 year old son. My son has a mole removed from his scalp in January. It came back as melanoma. As we started the whole melanoma treatment process and as all my sons results started to come back from his surgeries our oncologist consulted with Dr. Flaherty in Boston because Spitz Nevus and melanoma are indeed very similar. We made a trip to Boston to see Dr. Flaherty and he told us that diagnosing a Spitz Nevus vs. melanoma can be extremely difficult because of the similarities and not all centers in the US can accurately diagnose a Spitz Nevus. In fact he said there are probably only about 5 centers in the US that can do it, Boston being one of them. Dr. Flaherty said based on my sons age, and all the results they had so far there was a chance my son was misdiagnosed with melanoma. Dr.Flaherty and the pathology team at Boston Mass General, along with a pathologist from NYC analyzed all my sons pathology from the first mole removal to all the lymph nodes removed from his “melanoma” surgeries…after about 2 weeks Dr. Flaherty told us that although there was still a possibility that my son does not have melanoma and this was a Spitz Nevus, there were too many discrepancies under the microscope for the Boston pathology team to reverse the melanoma diagnosis with 100% certainty, and based on his age and having his whole life in front of him we started immunotherapy adjuvant therapy.
So my advice to you is to stay on top of the doctors and educate yourself about Spitz Nevus and melanoma. Find a pediatric melanoma specialist If possible in your area or an adult melanoma specialist to start ….not just a pediatric dermatologist…go higher up the chain. The higher the better. Children do get melanoma. And there is treatment that works!!!
You said you have a family history, that is definitely a risk factor. My son is fair skinned, red hair and blue eyes….that’s another risk factor. We always used sunscreen and where my sons original mole was was in his hairline, covered by his hair and his baseball cap which he always has on his head.
Im sorry you are dealing with this. I know exactly how you are feeling. I was just there a few months ago. I hope you are able to find the right doctor and I pray your diagnosis is Spitz Nevus with 100% certainty. But know no matter what the outcome this forum is so helpful, informative, and the support here is amazing!!!! I never thought this would become my new normal, but it did. And fortunately for me I found this board…it has really given me strength and hope on days when I needed it!! Best of luck to you and your child!!!!
Please check back with updates!!!
- August 6, 2018 at 4:14 am
Thank you so much for replying!! I really appreciate all of the advice! We have also always used sunscreen with our kids and she even wears a swim shirt most of the time if she goes swimming or when we go to the beach because she has fair skin and can be sensitive to the sun. It sounds like you guys have a great team of specialists for your son! Do you happen to know what the other 4 centers are besides Boston? The shave biopsy was done by a dermatologist locally who sees adults and kids but thankfully we live near a great Children’s hospital. We found out that the Children’s hospital here recently opened a melanoma and nevus clinic and she has an appointment there later this week. We are hopeful that the Dr’s are knowledgable and experienced but I have no idea what to expect at the appointment or how to prepare our daughter for it. We have tried to make it not a big deal so she isn’t worried but she does know there is a possibility that they will need to do a larger biopsy and they will most likely look at all of her moles to check them out. Did your son have a shave biopsy first? If so, did they have to go back in to do a bigger biopsy? For kids do they typically do them in their office with local numbing like the shave biopsy or do they give them sedation or anything? What is the healing like if they need to do a larger biopsy and what made them decide that they needed to remove lymph nodes? Sorry for all of the questions!! Thank you!!
- August 7, 2018 at 1:32 am
Your welcome!!!! I’m glad I can help!!!! That’s great news your local Children’s Hospital has a melanoma clinic….I think that’s a great place to start. They will definitely have more knowledge than just a dermatologist…melanoma specialists are the key to the best possible treatment. We learned that quickly in our journey. I do not know what the other 4 -5 centers Dr. Flaherty was referring to that could diagnose the difference between Spitz Nevus and melanoma…I never asked because Boston was one of them and that’s where we were sent by our doctors here in Buffalo…but if I were to guess after all the research I have done I would say Sloan Kettering, MD Anderson maybe…they all have big melanoma centers.
My sons mole was initially seen by his pediatrician, a dermatologist and a plastic surgeon and no one was alarmed…it took a few months for the first surgery by the plastic surgeon to remove the mole after going through the initial consultation and then the scheduling process around the Xmas holidays….again no one was worried so it was “no big deal”…I now wish I pushed for it sooner…but I don’t think the outcome would really have been any different. It’s just the mom guilt. Once that pathology came back melanoma, we were sent to a head and neck oncology surgeon who did a Wide lesion excision, taking more area around the original site and a sentinel node biopsy. And once that pathology came back positive for melanoma cells in the sentinel node my son had a complete lymph node dissection of his left neck…fortunately that came back negative. That made my son Stage 3a melanoma…The surgeon referred us to the oncology team for adjuvant therapy…and that’s when the oncology team started to see some Spitz Nevus similarities in my sons pathology reports that led us to Dr. Flaherty for further evaluation. Although I was disappointed that the Boston team could not reverse the diagnosis, I am glad that they have left no stone unturned and I’m ok with him getting treated For the what if……if we did nothing and this was melanoma I would never forgive myself. So erring on the side of caution is the best plan in our case. My son receives Opdivo treatments every 2 weeks for a year. We are at treatment number 6…he actually goes tomorrow morning. We are hoping to switch to monthly treatments soon as my son is starting college, playing college baseball, and biweekly will be difficult to manage….but we will do whatever we need to do to get through this. The doctors are very confident that my son has a excellent prognosis…I cling to their confidence…it’s what saves my sanity.
I think you are doing the right thing by not making a big deal out of this just yet especially with your daughter. My son is 17…but he is only 17. He has a hard time understanding everything…he has been a real trooper through all the surgeries and the even his new scars…but the treatments not so much…he hates them…he thinks they are “annoying” . His immaturity works against him now…even though the doctors say his young age is good for his prognosis…so my advice is less is best with your daughter…be honest and explain things as you go. No need to worry her before there is something to worry about. This could be a Spitz Nevus…and that’s what you need to believe right now. One step at a time.
I hope this information helps!!!! Good luck with the doctors this week and please let me know how it goes!!!! I will pray that you get great news!!!!!
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