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Old Jan 20th, 2014, 22:26 PM   11
TMonster
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Good luck! Hugs
Please keep us updated



 
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Old Jan 25th, 2014, 00:14 AM   12
spunky84
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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.



 
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Old Jan 25th, 2014, 04:10 AM   13
Clo
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*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



 
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Old Jan 25th, 2014, 11:14 AM   14
sequeena
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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



 
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Old Jan 25th, 2014, 12:28 PM   15
kirstybumx3
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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



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Old Jan 25th, 2014, 12:52 PM   16
FAB mama
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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!



 
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Old Jan 31st, 2014, 21:51 PM   17
spunky84
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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.



 
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Old Feb 2nd, 2014, 01:04 AM   18
scoobydrlp
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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.



 
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Old Feb 2nd, 2014, 14:32 PM   19
sbl
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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



 
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Old Feb 5th, 2014, 16:40 PM   20
spunky84
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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.



 
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