› Forums › Cutaneous Melanoma Community › Thought it was a tick bite on my scalp :(
- This topic has 12 replies, 6 voices, and was last updated 5 years, 5 months ago by
lkb.
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- November 24, 2018 at 1:22 am
Hello! I'm new to this craptastic world of melanoma. Nice to meet you all! I don't have any specific questions . . just wanted to share my predicament in case any of you have had a similar experience.
In September of 2018 I felt what I thought was another tick bite on my scalp, on the back of my head. I have "natural 80s hair" – super long and super thick, and I wasn't shocked at what I thought was just a bump from a bite. At least 2 months went by and I grudgingly made an appointment with a dematologist. When I got in there I said "I'm so embarassed, I think there is a tick head stuck in my skull. This sore won't heal." The "bump" was now about the size of my pinky finger nail, raised, bleeding, scabby and itchy. As soon as I flipped my hair over the dermatologist sucked in her breath and asked "Can I take a picture of this?" I knew I was in trouble. It was huge. It was black. It was angry.
I was sent to an oncologist, do not pass GO. As soon as my oncologist looked at my head, there was no need for a punch biopsy – I was scheduled for surgery to remove the growth. The one doctor told me "The melanoma of even 5 years ago is not the melanoma of today." They cut it out about a week later and I woke from anesthesia to the wonderful news "It's definitely melanoma".
The doc scheduled me for a PET scan, and when they called to tell me of the when and where I asked if they could move it up a little sooner? II was anxious and didn't want to wait a week. Sure, they said, can you come in tomorrow? Absolutely! I went in for the PET scan terrified but happy to finally have an answer to the dreaded "Where else is it?" The tech put in my IV and was just about to inect me when another tech came in and said "Stop! Insurance hasn't approved it yet!" Within 30 seconds they had yanked my IV and kicked me out the door. Eff you EviCore, the "company" Aetna uses for it's approvals. I'll refer to them as EVILCore from now on. I call EVILCore who tells me no PET scan for you, not until a lymph biopsy is positive. Go to hell, eviCore (formally CareCore, nice lawsuit by the by. After you Google the CareCore lawsuit, Google all the lawsuits Aetna has had for denial of services for cancer paitents.)
I stopped into my surgical oncologists office for a wound check (this hole in the back of my head is nasty) and while there, I got my pathology report. All I know is that it was the worst report card I ever received. The oncologist's PA however told me "This is NOT a death sentence. Melanoma has come a long way." The tumor was 7.5mm, it was pretty active . . I got all the bad news.
Docs got me an MRI and a CT. On a Friday of course, so I had to sweat it out over the weekend for the results. Those were the longest couple of days I've ever experienced. The PA called me Monday . . it wasn't in my brain and it wasn't in my lungs!!! There were some nodes of "concern" in my neck however. I was not surprised in the least. There is no way that nasty thing was as angry as it was and was going to go queitly, I'm sure it's in my nodes. The PA said she had been battling with my insurance company (again, eff you Aetna and EviCore) but a PET scan was not going to happen. So they schedued me pretty quickly for a needle biopsy.
I am also scheduled for surgery on November 29th, so I went to meet with my surgical oncologist. I love that guy. 🙂 He's confident and caring and his team is rediculously kind. They are going to do the wide incisions to take more skin from around the initial site. Then I went to meet with the plastic surgeon who will be jumping into my surgery after the oncologist to seal up the hole. We talked about a possible skin graft or "fake skin". I then got another kick in the pants – he flat out told me "I suggest you make a hair appointment and have your hair significantly reduced before the surgery next week, because I'm quite sure I'll be shaving your head". Did I mention I have huge, really long hair? Well, I cried for a little bit but it's just hair. I called a local salon and I have an appointment the day before my surgery to have the hair taken for Locks of Love, and whatever is left I just pray I still have after the next surgery.
The needle biopsy the next day was not fun but I just kept reminding myself of all the tattoos and piercings I have and kept mentally berating myself to suck it up. I then had an appointment with my new medical oncologist moving forward. This doctor was AMAZING. She went over my pathology report line by line, then she went over my body freckle by freckle. We discussed therapies and prognosis and research and I came out of that appointment feeling optomistic for the first time since this nightmare began.
So I have a few days before the next surgery. I'm okay with surgery, I'm a nerd and I find everything facinating. Plus I get pain pills and can lay in bed playing video games. No problem. 😉
I read somewhere on a cancer blog that this can be the most horrible and yet the most beautiful experience of your life. And that's 100% accurate. I'm so scared, I'm so depressed . . I cry and shake and feel sick to my stomach. (Hey at least I'll finally lose some weight! Look for the positives, right?) But I can't believe the kindness, caring and love I've received.
My coworkers and my family and my friends have been . . I can't even find the words for how wonderfully supportive they have been. Know what one of my biggest fears is? That people go though this crap alone. I want to help whomever I can, and if any of you have any suggestions for how I can do such, please let me know.
Thank you for letting me babble. And it's a pleasure to meet you all. Let's fight this battle together.
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- November 24, 2018 at 2:45 am
Welcome Ms. W. Witch – not where you want to be but you have joined one helluva good group of people. I know when you first start the battle you get quite overwhelmed. There will be plenty of bad days coming up but also plenty of good days for you to enjoy. Make sure that you pick the best team possible, do your research, even ask for assistance here. Melanoma is no longer the death sentence that it was fifteen years ago. You will find the right treatment and in ten years, all of this will be one nasty memory. Stay positive and keep putting yourself in the best position to get the right answers. Do all of your friends call you the Wicked Witch or do you have a nickname that you could share with us?
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- November 25, 2018 at 7:51 pm
Thanks for the reply John! It is SO nice to hear encoraging news, expecially since everything I've heard lately has been so negative.
I'm a huge fan of Wicked and the Wizard of Oz. The title "Wicked Witch of the West" was already taken, so my email is "Wicked Witch of the Burgh". It's just become my . . is moniker the correct word that I'm looking for?
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- November 24, 2018 at 1:58 pm
So sorry to hear you've joined this little club. Getting the diagnosis absolutely sucks and when you have to battle with your insurance company, it REALLY sucks.
I had an enlarged lymph node removed from my arm pit on November 26, 2010 that turned out to be melanoma. BTW, that was on Black Friday that year (of ALL days to learn you had a lymph node loaded with melanoma…LOL). Am coming up on 8 years of being cancer-free. So yes, there is life after a melanoma diagnosis.
In all these 8 years, I've never had a PET scan. What I've had in lieu of a PET is an ultra-high resolutiion CT scan. The detail these ultra-high CTs get is pretty amazing. Not all hospitals have the ultra-high machines, though, so you'd have to check with your oncologist as to whether the facility you're going to has one. I believe all major cancer facilities should have one.
In spite of all this scary stuff, you do have some positive news: it's not in your brain or lungs. And, that's something good to hold onto whenever you're feeling down or scared.
Yeah, people do go through this crap alone. Some feel better battling this solo, while others need the help and it just isn't there. This board is a good place to start. Newbies come here scared $hitless and need reassurance. Another good place to support others is in waiting rooms. While not everyone is prepared to chat with strangers, a few may be and if I can make someone laugh/smile/relax before they go in to see the doc I know I've done well.
Good luck with your surgery. Please keep us posted.
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- November 25, 2018 at 7:59 pm
Linny thank you SO MUCH for the encouragement. I really love that you guys keep so many details in your profiles, just reading over yours shows me that I'm not alone! I'll check my doctor on Monday about the high-rez CT!
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- November 24, 2018 at 3:22 pm
The following is an explanation of High Res vs. standard CT scans https://www.youtube.com/watch?v=HgjZeQ1kUn8. I have had PET scans from the beginning of my diagnosis at Mayo Clinic and also continued PETs at MD Anderson, 8 total so far. I have bone mets, so believe I need the PET to imeasure tumor activity as my bone lesions don't show reductions as a soft tumor would. Definately a question to ask at my next Scan. Best Wishes to you.
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- November 25, 2018 at 8:06 pm
What an amazingly interesting video. I love learning new things like this! 😉 Thank you for the brain candy!
So a good ole standard CT is the way to go when looking for possible mets in soft tissue?
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- November 26, 2018 at 12:33 am
Yeah, that was a pretty good video! Now I have a bunch of questions for my doc when I see him in March. LOL.
I know that some docs like to do a PET and CT. My understanding is that PETs can give you false positives. So that's one reason for doing the CT along with it.
Your best bet is to go armed with a bunch of questions to ask your doctor at your visit. He/she will have a plan in place for monitoring you. As to what that will consist of and at what intervals they will be done will be up to him/her. Generally, the first year you get scanned 4x/year, the second year it's 3x/year, and when you hit the 2 year mark it's 2x/year until you've reached 5 years. After 5 years you can go to 1x/year if you and your doctor feel comfortable with that. But, it's all up to your doc.
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- November 24, 2018 at 4:35 pm
I am sorry you had to join this group but it is a great group to be apart of as everyone cares about everyone else and trys to help one another.
My husband had a head full of longer thick hair and his melanoma developed out of a mole that was on the back of his head that turned black. I cut his hair so I told him about it but he didn't listen to me. Then it became larger, crusty, itchy and seeping. When he finally went to the dermatologist and had it biopsied the derm said it was basile cell at the worst. It was 10.5 mm and was indeed melanoma. His SN was clear of malanoma and his surgery was on Valentines Day 2008. After 4 surgeries and 2 years and 8 months later he had a unresectable lesion and metastisis to his lungs and liver. He started a clinical trial in March 2011 of Ipi (10 mg/kg) every 3 weeks for the first twelve weeks and GMCSF daily injections for fourteen days and then 7 days off. After the first twelve weeks of Ipi it was then moved to every 12 weeks infusions while the GMCSF stayed on the same schedule they were on. Sixteen months later he became NED and has remained that way for over 6 years.
You can read more about him on his profile page if you want.
Judy the loving wife of Gene Stage IV and now NED for over 6 years.
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- November 25, 2018 at 7:56 pm
Thank you for the information Judy! I did read his profile and it give me so much hope and motivation to just keep fighting round after round!
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- November 27, 2018 at 5:04 pm
Hello WW, I'm part of the scalp melanoma club. I was orgiinally going ot have a plastic surgeon join the surgery, but they decided on a skin graft instead. Wishing you the best resuts with your WLE. Know that we will all be rooting for you and want to be updated.
Lisa
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- November 30, 2018 at 5:24 pm
I was supposed to have surgery yesterday, but they cancelled it because they have me going in for a PET today. On a Friday. At 4pm of course so I can sweat all weekend. I asked them if there were doing this to me on purpose!
So here we are almost 6 weeks after this began, I've had a CT, an MRI and a positive needle biopsy to get to the PET scan which they should have just friggin done from the start.
Grrrrrr. Well, I've been singing the song "Radioactive" by Imagine Dragons all day. And hoping I develop some super powers.
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- December 5, 2018 at 4:13 am
As I've posted before you came aboard, all of my finds have been on Fridays. Dang! Long sweaty weekends. General adie seems ot be to have my calendar skip that day and go directly from Thursday to Saturday. I'll take it. Hope your surgery was rescheduled and you are recovering swiftly.
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Tagged: cutaneous melanoma
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