LO is getting her birthmark removed - biopsy revealed as precancerous

[spunky84]

LO was born with a large birthmark on her leg. During her first visit with the pediatrician, she had us schedule her an appt with a dermatologist.

She was about 2 weeks when she saw the first dermatologist. He said it was non-cancerous but could, at some point, become cancerous. He said that she could have it removed for cosmetic reasons once she's a teenager...

That wasn't good enough for me & I discussed it with her pediatrician. Her pediatrician wasn't really satisfied with it either and was on the same page as me with wanting to get it removed sooner than later (for my own piece of mind and for LO's benefit).

We finally had her second opinion appt today - this time with a pediatric dermatologist (I didn't know that there was a specialty in pediatrics!).

The birthmark grew .5 - 1 cm since she was 2 1/2 weeks old. Her birthmark is 4cm in length which puts it in the "medium" category which also means that she's at higher risk of it being cancerous vs if it were under 2 cm.

DH and I discussed it before the appt, so I was able to tell her that we're going ahead with it. I asked if she should any older and she said that it's already grown that much since she was 2 weeks and they don't want to wait too long to remove it. She was actually appalled at the other derm's assessment (waiting for her to be a teenager and for cosmetic reasons).

She has to go for a biopsy on January 9th. That way if there are any abnormal cells, the surgeon will know if he needs to extend the margins.

I'm doing the worst thing I can do right now by googling, but I did find something interesting.

Superficial Spreading Melanoma. Which they say accounts for 70% of melanomas, which is also the most common and most curable. The description match LO's perfectly & it even said that in women it's usually located on the back of the leg, which is exactly where LO's is.

I don't want to have to put her through surgery at such a young age, but after reading that especially, I feel like it's definitely the right thing.

I'm scared out of my mind though. I feel like January cannot come fast enough. I remember when I first saw it after she was born. My heart sank and automatically worried that it was something. Everyone else just kept harping on how big it was (which annoyed the crap out of me).

I'm just praying that it's benign and that removing it will just fix it all together.

Has anyone been through anything like this with their LO? How was the surgery and recovery? Did it resolve things or did you still find anything new cropping up? How do you deal with such a little, innocent baby going through that?

I'm sure it's not invasive, but still, it's so hard to imagine putting her through this and the potential alternative of not going through with it.

 

[TMonster]

I didn't deal with a birth mark but I dealt with open heart surgery so its not quite the same thing but still a medical procedure and still terrifying and truthfully, it wasn't as bad as I expected it to be. I looked at a ton of pictures so I knew what to expect but truthfully, when she came out of it, all I saw was my beautiful little girl and that I will deal with whatever I have to for her and that I need to be strong for her. Honestly, I was worried about having this huge scar on her chest but it looks like a large scratch that is fading more each day.

You will get through it and everything will be fine.

Hugs

PM me if you have any questions.

 

[drudai]

My LO didn't go through it but I did!

I was born with a birth mark on my left leg, dr's at the time didn't think it was really anything more than just something that happens at birth.

I went to a dermatologist all my life for skin allergies, and they observed it as well. It grew bigger, and bigger, and had hair. I called it my bunny rabbit?? through childhood. By the time I was 10, it was about 3 inches long and 2 inches wide. One visit my dr said it was being discovered that these birthmarks could be cancerous. As you can imagine my mother was shocked, and they had it removed.

Spoiler

They numbed my entire leg, and used a scalpel to cut it away, and stitched the skin together. I imagine it won't be as scarring for a newborn as it was for me. It was a completely pain free procedure, except I still remember feeling the cold blade. *shudder*

2nd picture is me, today, 11 years later. It's still a scar but faded. It ended up not being cancerous but there was always the possibility that it could have been.

For me, in my opinion, do your daughter a favor and get it removed now. It wasn't fun growing up with it, and even worse having such a horrible scar all my teenage years. I don't even notice it now, but back then I was really self conscious. By the time she's 10, I bet the scar will be faded.

Let me know if you have any questions.

 

[spunky84]

TMonster, that had to frightening for you Open heart surgery, definitely not the same thing, but much scarier! I'm really glad your LO did great with it and is doing well How did you find the strength to get through it? For me, it's not so much the surgery that I'm worried about, but the biopsy. More of the fear of the unknown and what happens if it doesn't come back benign.

drudai, wow, you can barely notice anything! I'm glad that yours was benign. I imagine that it had to be hard to go through that though. Just the wondering. Have you been told to watch for any new growths or anything like that?


We're definitely getting the surgery. I was hoping for that treatment plan from the first dermatologist. Just from him saying that it could become cancerous at some point was enough for me to say I want it removed. There's a small part that wanted it removed just for her sake - superficial reasons - not that I dislike her birthmark, but I also know that kids can be cruel and I didn't want that to change her in a bad way. But mainly for the risk factor.

I'd imagine that if it continued to grow with her, the size of it would likely put it in the large category which is nearly always cancerous. From my reading, hers would be in the most common and most curable, but still the most life threatening form of skin cancer.

I was feeling okay with the surgery (I mean, there's risks with every surgery no matter how little or big, but I felt it'd be okay). It's pretty much the biopsy that kind of turned me upside down. Even though I know that a biopsy would be the best plan so that if it were cancerous or pre-cancerous, they could make sure they remove enough to get all of the stray cells. Besides the fact that she's my baby, it's just hard to imagine something so small, innocent and pure having to go through something like that. I know that illnesses or anything like that doesn't discriminate against age, but it just feels like what did she do to deserve this?

I feel like we're doing the right thing. I can't imagine her having to fight cancer because we didn't do something about it, whether it be while she's a baby, a child, a teenager or an adult. She'd have her whole life ahead of her possibly compromised. And what if she was married and had kids? Then our lack of being proactive now is also putting her husband and kids through it (yes I've thought far ahead into her future lol).

It's just the unknown that's scary. And also not sure of how to deal with it if it comes back unfavorable. Scared that she won't make it to her first birthday (yes I went to the extreme in my freak out mode today).

I do feel good about what we're doing though. I feel like getting it removed now will hopefully allow her to heal more nicely, hopefully less scarring. Also, she won't remember it. I'm guessing she'll have to be put under (which is a little scary) due to her age and can't imagine they'd be able to remove it with her kicking and screaming. She'll probably be around 5-6 months when she finally has it done.

Here's her birthmark:

https://img.photobucket.com/albums/v111/spunky84/Peanut/IMG_1014.jpg

 

[drudai]

That's actually larger than I imagined it would be, she is still so very young!

Like I said, mine grew with me. At the rate it was growing, my Dr told my mother that by the time I was 20 it would probably cover a large portion of my mid thigh! Worst part was how it was fuzzy with hair. I still remember touching it... Icky. Lol!!
ETA: The earlier the better, believe me! I can't imagine my scar being any bigger than it is... uck!

I agree that they will probably put her under, can't have her kicking/squirming. My procedure was done right there at the dermatologist office exam room, no OR or anything like that. They didn't even numb me with shots, they had me wear this very very weird large bandage with numbing ointment for 24 hours. My father had to carry me into the dr office as I couldn't walk. And then back out.

I know it's very scary, and I know no amount of "don't worry"s won't help, but I'm very positive everything is going to be okay. Yes, sometimes these things are cancerous, but you are nipping it in the bud!! You are doing what's best for her and in no time in her life will she be angry about this. She will have a story to tell (just like I do now) and be cancer free.

Also, no, they never watched for growths. I do have a "skin tag" between my shoulder blades, up high near the base of my neck. They determined that it wasn't a cause of concern, as my mother has one in exactly the same place. May be genetic.

 

[drudai]

I just want to reassure you that the surgery itself isn't so awful. It was actually very quick, low tension, etc. Actually, all my life, when nurses/doctors would ask for "history of surgeries?" and I would explain my leg, they never added it to the list.

 

[TMonster]

I understand how you feel about having the strength to deal with it and go through it but somehow you find it and manage and some days its hard and you have your meltdowns but then you put things into perspective and you look at your beautiful child and they heal so quickly its really amazing.

No one looking at my lo can tell that there is anything wrong with her and unless they see the scar they have no idea about OHS. She looks and behaves just like any other normal baby.

At one point they did a blood test and she was having high potassium levels (long story) and they were trying to figure out why and found a blast cell and so they did a full oncology workup. It turned out to be nothing (she had a blood transfusion and it was after major surgery etc.) but I nearly had a meltdown. This was the day before Thanksgiving. I flew back from CA Tues night, arrived Wed morning at 6am, went straight to the cardiologists office for a followup and then they found this. They sent us to the ER because their office closed at noon an I was there till after midnight totally hysterical until they told us it was nothing.

Some days are easier than others.

As far as teasing... I have a birthmark on the back of my left thigh. It is bright red and looks like I have a rash there. My mother used to joke that when she was pregnant she was craving pizza and my father never got it for her so I ended up with something that looked like a pizza pie with a slice removed on my thigh. Now its blotchy and takes up most of my thigh but I have never felt self conscious about it, I never got teased or anything else. I have had people occasionally ask me if I hurt myself or if I had a rash and I just said its a birth mark but that is the extent of it.

As far as my daughters scar goes, we decided that if people say anything to her she can just say she got it at 'nam. I know the scars fade to pretty much nothing very quickly so that is what I am hoping will happen to hers. I will just teach her to be proud of her body and what she has overcome.

 

[sequeena]

My son has been through 2 operations on his hand (one to remove a polydactyly, the other to correct a hypoplastic thumb) and will probably have an op for grommets in the new year. It was scary each time but the time went faster than I thought and the recovery was fine (though after the first op he did have a nasty infection).

Operations, especially if they're under general anaesthetic are always scary no matter what they're having done.

 

[spunky84]

We got LO's biopsy done on the 9th, and we just got the results back today.

It turns out that her birthmark is already pre-cancerous. I'm hoping that fact will help persuade my insurance to authorize her surgery.

Authorization takes approx 3-5 days at earliest, so I'm hoping to know more by sometime next week. If authorized, the next step will be the consultation and then hopefully the surgery soon after.

 

[sequeena]

Good luck I hope she gets the op ASAP xx

 

[TMonster]

Good luck! Hugs
Please keep us updated

 

[spunky84]

Her consult for surgery is on the 31st. I'm absolutely amazed that the consult was scheduled so quickly. The plastic surgeon will have to request authorization which will probably take about a week if it goes well.

My next fear is that my insurance won't authorize it, but after reviewing the clinical bulletin again, I feel more confident that they will. They didn't say much about medium nevi other than it's controversial on their risk for malignancy. They mostly focused on the small sized that would be considered cosmetic unless certain criteria were met for medical necessity, which one of them was pre-malignancy.

Since her's is (and medium), I feel confident that it won't be an issue getting the authorization.

Her dermatologist said that the pre-cancerous cells were in the mild to moderate range. It could take several years for it to turn into cancer - which isn't always certain (though I feel in her case, it will be, especially considering how large it will be once she reaches adulthood which will increase the malignancy risk).

Also, getting the birthmark removed doesn't mean she won't still get the skin cancer - just hopefully improves the odds that she doesn't. Which means we'll have to be vigilant about her wearing sunscreen and protective clothing. I'm sure there will come a time when she'll whine about it lol

I just worry though about the margins that they'll have to remove. The biopsy was done at the edge of the birthmark which makes me wonder how far into normal skin that he abnormal cells have traveled (something to ask the surgeon!).

I'm nervous about the surgery, just because I don't know what to expect (I'm assuming they'll have to put her under because of her age) & that there are risks to even minor procedures - but I'm trying to cross that bridge when it comes.

We're taking her to Rainbow Babies, which I'm thankful for. Her dermatologist said we could go to someone local, but I want someone who specializes in babies. I think that's more for my comfort.

I've had a lot of people who know about this say irritating things (the people at work who have to know due to work reasons). They keep saying "Oh it'll be fine". They kept saying that about her biopsy and, well, obviously her biopsy was not fine. I wish people would just stop saying that it'll be fine. I'm grateful that it didn't come back cancerous, but pre-cancerous is still scary, especially knowing that we can still be facing cancer in her future. So, no, it's not fine. I mean, we'll continue to move forward and not make the possibility of cancer our whole lives, but it's something we have to accept may happen in her future - and maybe not that far into the future. It's a very real and possible and scary thing, so saying that it'll be fine is the last thing I want to hear.

My mom told her coworkers/friends about it, and they've been amazing. Though I think this is something a little closer to their hearts - my mom's boss's niece passed away from cancer a few years ago at the young age of 2.

So yeah, the 31st we'll be making a 3 hour round trip for her consultation. I just am anxious to get more information on what to expect.

Oh, and it might sound lame, but I have a lot of mixed emotions about getting her birthmark removed. Part of me is relieved, just knowing that we're decreasing her risk. The other part of me is sad. The birthmark was something very special about her. It's been there since she was born. In the shape of a leaf. I feel like I'm taking something away from her. And it sounds stupid, but I feel like she won't be the same baby without it - which is so stupid to even think that. I feel like I'm taking something away from her without her permission even though it's what's best.

 

[Clo]

*big hugs hun* I know it's not the same but my ds had surgery just under 2 weeks ago at 8 weeks old (he had an ingunial hernia) and although it was so awful handing him over for it, it was over really quickly and he was completely fine.

It's only natural to worry about your baby and of course you are right to be worried about it being pre-cancerous, but getting it removed now should drastically reduce the risk of any issues xxx

 

[sequeena]

I think we all go through the same emotions. Terrified of the surgery, all the what ifs, missing the part of them that's being removed (my son had a 3rd thumb removed which was too dangerous to leave, I still miss it and his first surgery was over 2 years ago).

As for the 'it'll be fine' comments. I get those about my son all the time. He has several conditions including a possible genetic condition. I know people mean well but I need them to understand that he's not going to magically be fine, he's going to need a lot of help and support and things will probably get worse before they get better.

Try not to get too mad, I don't think they know what else to say. Good luck with the pre op and I hope your insurance okays the surgery

 

[kirstybumx3]

You should be so proud of yourself seriously. You sound like such a fantastic caring mother. Yes you are taking something away from her but you are doing it because that's what's best for her, and that's what matters. Huge hugs to you! X

 

[FAB mama]

I'm just reading this, but I'm glad you pushed to get it removed. I had a friend pass away from skin cancer and it scares me quite a bit. I've had some minor removals myself, but nothing like that birthmark. I did have to get stitches in my hand because of a mole when I was learning how to drive as a teenager. That wasn't fun!

Your daughter will one day be glad you are cautious and taking care of a possible problem instead of having to fear it when she's older. And the sunscreen will just teach her good lessons anyway that will hopefully stick with her when she's older. I hope her surgery goes ok!

 

[spunky84]

We had her consultation today with the plastic surgeon. He didn't have any doubts about it being removed.

Based on size, shape and color alone were enough for him to recommend removal. He did say that hers may be a little more tricky with it being on her leg. Mostly with the stitching it up. It may require 2 surgeries.

He won't know for sure until he's in the process of the first. It'll depend on the flexibility of her skin and how he'll be able to stitch it up. There may be too great of risk of the skin to tear since she'll still be growing. So he may have to remove some and stitch. Once healed go back in and do the rest.

They are working on getting authorization from my insurance which hopefully won't take longer than next Friday. I'll try calling Wednesday and hopefully if nothing then by Friday. My insurance said that it typically takes 3-5 days. As soon as we have the authorization we'll be able to call and schedule her surgery.

 

[scoobydrlp]

You're doing the right thing! And it's so nice to hear that the medical professionals you're dealing with (with the exception of the first dermatologist) are being as proactive as they are. I'm glad you went for a second opinion, too many people go against their gut because of what one doctor tells them. FX that you get a quick approval for insurance coverage and that they can get it fully removed in just one surgery.

 

[sbl]

Aw I hope everything works out good hun.
So hard for you guys to deal with insurance crap on top of this.
I'll be thinking and praying for your lo xx

 

[spunky84]

Once the insurance received the CPT codes from the surgeon's office, they said that authorization wasn't needed. Makes me nervous that someone told the surgeon's office wrong, but we'll deal with that if they try to deny for authorization.

Her surgery is scheduled for Feb 25.

I'll be worried about the surgery the day of the surgery, but for now, I'm more worried about the fact that she'll have to fast before! What a nightmare that's going to be.