Questions.... questions.... questions... (sorry this is a LONG one)

So my lovely friend Christie said she had lots of questions, and I said send them my way.  And as I started to respond, I figured these are things others are probably wondering.  So - I thought I'd share the info with you!  If you have other questions, please let me know.  I really don't mind answering what I can. 

1. Do you have a pic of your mole before it was removed? Like did you go through pics trying to find it? Did it appear out of nowhere? Or has it been there your whole life and all of a sudden became itchy? Is there a sample image of one online that you can find? I guess all moles look diff though. 

- What did my mole look like?  Well when I had it removed I remember the nurse saying "well that is an angry looking mole"  :) It had gotten rubbed by my backpack while traveling in New Zealand and Australia and was really irritated.   But at that point I had really noticed it growing!  But when you typically look up Melanoma you get images like:

- When looking at images it looked more like squamous cell carcinoma...  But if I had to pick a picture it was something similar to =

- It had not been there my whole life.  In March 2009 when having my physical to get ready to go to Peru, it was a slightly raised, perfectly round, pinkish lesion.  I asked my doctor about it who said - it's nothing.  Don't worry about it.  I only asked about it because it itched like crazy!  WARNING SIGN!  But yes all moles look different and if you question it at all - have it biopsied!   

-  Remember the warning signs and don't ignore them - ABCDE and I'd throw in an I for itchy (guess maybe that falls in to the category of evolving)!  :) 

2. You don't really tan, do you? Do you remember a time you burned bad? Were there more times than not? Have you always used sunscreen? What did the doc say was the cause???

-  I have never been one to actively try to tan.  I had a couple of bad burns when I was really little and over the years have had a few sunburns.  There are all sorts of stats out there about sunburns.  I've always tried to remember sunscreen.  Even to the point where I remember once a friend teasing me for putting sunscreen on my face even as the sun was starting to go down.  

-  I didn't really ask my oncologists for a reason - but the dermatologist mentioned she's seen cases like mine but typically on 60+ year old people who have lived in Florida their whole life.  Some things you read state that nodular melanoma may not be sun related - who knows....  

3. You're German decent, right? Or are you Irish??? 

-  Yes mostly German (with a little Irish and other things in the mix as well) 

4. When you went into the doctor to get it first looked at, did you have a sinking feeling of some sort? I mean, there was a reason you went in...i think Mike said your backpack was bothering that spot. But something had to push you to actually go in. I don't know how to explain it, but sometimes I get this crazy women's intuition...just wondering if you felt any of that?

-  Yes, when I went in to have the doctor look at it I figured it wasn't normal.  It had definitely started to grow over the last 4-6 weeks (another sign!)  And the type mine was (Nodular) accounts for about 15% of all Melanoma cases.  When it grows, it grows fast!  And it grows more vertical than horizontal on the skin.  So when it's growing up it's growing down into the skin about the same rate.  

-  I went in because I knew for awhile it needed to come off and it getting irritated was just the last straw.  It actually started bleeding at one point while on our trip.  It kind of freaked me out.  But I thought nothing of it when the dermatologist removed it because she kept telling me "in 2 weeks you'll get the pathology report that it's nothing".  When she called me and asked me to come in, that's when I got a sick feeling in my stomach and new it really wasn't nothing.  She couldn't even really look me in the eyes - she just kept looking at the paper saying "it's nodular...  and I'm shocked".  Tell me about it lady!

5. I've been reading your blog. So it sounds like you want to have that gene only 40-60% of melanoma patients have? Or you don't? I hate all those big medical words when I google this stuff. And I swear Google just likes to scare people. 

-  So I have mixed feelings on what treatment to do.  The BRAF mutation that 40-60% have - that drug has shown outstanding results.  Like tumors shrinking in days.  But, there is still a lot to figure out about it and no one knows if it's a lasting drug or if it just holds things back for awhile. 

-  Yes Google can be overwhelming and it's hard to know what to believe! That's why I put a few links for some sights that are more reliable.  Because as we know (I'm proof of it) anyone can put a website together and share information :)  Just need to know what to believe.  

-  And don't get caught up in the statistics!  They are just that.  Every case is different... 

6. Can you focus? Just on in general? Or is the thought always in the back of your mind?

-  Hmm focus?  I have my moments!  Honestly before this whole last CT scan and lung spots I was finally feeling like things were getting back to normal after the initial news and surgeries.  When I met the med onc at Sloan on Jan 11th, my blood pressure was back where it needed to be, I was getting settled in to my new place, etc.  

-  The tough part is I don't think it will ever really not be in the back of my mind.  People with Stage III and IV will live for years as NED (no evidence of disease) but the fact is you never really know - it's a sneaky little beast.  Plus at least for the next 5 years I'll be in to see dermatologist and oncologists every 3 months (on top of treatment visits).  Talk to any patient going thru something like this (melanoma or not) and they all get 'scanxiety' every time you're in for a new CT Scan, Chest X-Ray, MRI, etc.  It's hard not too.  I think at this point I'll be glowing by Christmas :)

-  And I guess to help distract me - I did throw in a move to a new state and started with a new company and job all at the same time!  It’s probably the only reason why for the first time in my last 4 moves I have actually gotten all of my boxes unpacked in a timely manner!

7. You mentioned you have your 'why me' moments. What helps you get over them? 

-  Well, I try not to dwell too much on the 'why me' - but let's get real, I'd be lying if I said I never have those moments.  I just try to get involved in things.  Walk away from a computer so I don't feel compelled to research all these things I can't really fix.  And remind myself that dwelling on it isn't going to fix it.  Things happen for a reason and as I was reminded of this weekend - God doesn't give you what he doesn't think you can handle, right?  Yes it sucks, I mean I'd rather be given a million dollars and see how I can handle that :) but that didn't happen (still could... I'm not giving up hope! ha) 

8. Does this make you change your view on life and the way you're living? 

-  How has this changed my views and the way I live?  Well I've always been a fairly - glass is half full person.  It's a reminder to eat healthier again and get in shape.  I think I had gotten to the point where I had let work take over my life.  It was a tough decision for me to decide to leave my 'Miller family', but in the end felt it was something I needed to do.  As my boss pointed out today - perhaps it's a blessing that I ended up in NJ because there are some excellent doctors here.  Not to discredit my doctors at UNC-Chapel Hill.  They were fantastic!  But I've found Sloan to be a little more aggressive in testing.  And they have more treatment options available.

-  I can say this - I do find myself making sure I do things I like.  Why not, right?  No sense in waiting around wondering 'what if' - make it happen.  The worst that can happen is you fail but at least you tried. 

9. Is it solely from being in the sun??? There's nothing else that contributes? Did you fake bake back in the day? I guess I'm freakin cuz I did. I didn't always wear sunscreen. And I have moles on my body. I had them checked two years ago and the doc was like..."you need to look for the ones that either grow or pop up out of nowhere." I feel like he didn't do a good job and just passed me off. He did study the back of my legs since he said that's where most moles have been he found on the last three women with skin cancer. 

-  It could really be a combination of all of the above.  I fit the fair-skinned stero-type.  I've had my fair share of sun burns.  I've been in a tanning bed a handful of times usually right before going on a trip to Mexico to try and make sure I didn't burn.  But there are some crazy stats that if you've done the fake baking it greatly increases your chances of skin cancer.  NO MORE TANNING!  and like I said before, there is talk that nodular may not be sun related?  who knows... 

-  You should have our moles checked yearly.  If you're really worried about them (and it's hard to see changes in them) there are places out there that will do digital photos of your moles so they can compare if they have grown (I can send you links of where to find a place near you if you want).  If you feel like your dermatologist isn't doing a good job - get a new one - remember you are your own best advocate!!  and yes most women will get them on the back of their legs or upper back.  Mine was upper back.  and again if you think it looks/feels funny at all, get the biopsy!  It sucks but it's the only way to know for sure.  Looking at it won't tell you what it is.   

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  1. erin,
    this is so great. thanks for posting this and being so open and honest. :-)

    i totally believe in intuition! i've had a precancerous mole and a basal cell carcinoma removed and the biggest factor in having them removed was ME! doctors know a lot about everyone's problems but they don't know everything about YOURS because only you know your body. trust yourself!

    thanks again for writing this post. it was well worth reading.

    take good care,

  2. Hey Lisa,

    No problem. I don't mind sharing, especially if it can help someone else!

    Although, I am noticing I should have checked for errors! ;)

    But you guys get the idea :)

  3. I love this entry. I think it answers a lot of the typical questions that people have but are afraid to ask. Thanks for sharing :-)