MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/20/2018 - 11:45pm
Replies by: Janner

Hello, hope to get some suggestions...

Currently have a experienced dermatologist, she isn’t a melanoma specialist but she found my stage 1a melanoma and other moderate atypical moles.  I am also very grateful she refused to do a shave on my primary melanoma lesion and sent me directly to the plastic surgeon for excision biopsy.  It came back stage 1a/.07mm/clear margins 4.0 mm.  I have the WLE scheduled with this same plastic surgeon to take 10mm.  Along with skin cancer she also performs breast cancer surgery but she is not a melanoma specialist.  She also said no lymph node biopsy is needed.  

My question is: should I be looking for a dermatologist and surgeon who specializes in melanoma?  Should I have a sugerical oncologist for the WLE?  Thank you 

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Stoofs's picture
Replies 0

I just wanted to say thank you all for the peace of mind you've given me this week while waiting for results of my biopsy. I have a mole that turned black and has "spread". My PC says she's concerned, which sent me into a full blown panic attack in her office. Yay, anxiety!
It's been a trying year for my husband and I; it's also our first year of marriage. I won't bore you guys with our other issues but I've had a few health scares, including a growth in the back of my throat, chronic fatigue, and a few blood tests that came back with a very low white blood cell count. I had the throat growth biopsied and removed and it came back benign. After a bone marrow biopsy (a particularly enjoyable experience lol) they were unable to explain my low T cells. Phew. Ok, so no cancer or disease.
My husband noticed this mole months ago and I figured I'd get it checked out when I go in for my next physical. It wasn't a concern because I had no idea how deadly melanoma can be. I've always heard of people getting skin cancer and then simply getting it removed. Compared to everything else going on a mole was the last thing on my mind.
He recently reminded me that I should get it checked out, so I looked up what it could possibly be. HORRIBLE IDEA. I quickly made the appointment and now I wait. The internet has sent me spiraling. I feel ridiculous because I don't even know yet but this whole year I've felt not myself. I just know something is off, so in the back of my mind I'm thinking, "This could explain it." When I found this site I was flooded with relief. You guys are always encouraging, even if it's just someone like me who's unsure and scared out of their minds. Any time I've had the urge to go back online, I just come here. So, thank you.

Stephanie McCann

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Replies by: Janner, MarkR, Abenites1985

Hey all!

33yo woman here with tons of sun damage from a misguided youth without sunscreen. My mom was a tanner and never taught me the dangers of sun damage or bothered with sunscreen, so when I became a lifeguard as a teen, neither did I. Tanning beds, deep suntans in the summer... and I'm a blonde Irish/Norwegian mix with red undertones in my hair, so almost as fair skinned as you can get.

About a year ago I noticed a new bump on my face. It was a little shiny pink raised bump that I thought was a small whitehead or something that just hadn't "ripened" yet. I tried popping it a few times and it just got angry and bled. Fast forward a few months. It had grown more vertically and started turning tan. I took a pic (and made a mental note to get it looked at soon) and then life happened and I put it on the back burner again.

Fast forward to last week and I got a better look at it in the mirror, which I usually avoid due to poor self esteem. It has changed. A LOT. It has gotten thicker and firmer, is very slightly scaling around the outer edge, and is filling in with very uneven, varied-color pigments. This thing is tiny, about 2.5mm, but looks like none of my other moles, freckles, sunspots, or anything. I have read descriptions of NM that pretty closely match how it has behaved and what it looks like, so I'm definitely moving on it in a hurry now.

I'm getting it looked at Monday morning by a derm and I'm definitely nervous, especially as the single mother of a 12 year old, but kind of just trying to brace myself for bad news just in case. It's definitely not "normal," but here's hoping for no malignancy. I especially hope this as I already have a chronic health condition that can be life threatening on its own. Nobody in my family knows about my derm appointment yet. Hopefully they don't need to.

I want to thank this forum for providing so much valuable insight to me over the past few days as I work to find out what it is. I have a list of questions for the derm on Monday morning and it's thanks to this crowd. You are a bunch of beautiful brave warriors and give great advice.

I leave you with pics of my face-mole-bump-spot-thing and ask for well wishes, prayers, crossed fingers, good vibes, fairy dust, or whatever you believe in. Hoping I don't need to join this group for the long haul, but at least if I need to I know I'm in great company. Thank you all for posting such great info for a newbie to all this to pick up and run with! It's much appreciated.

Before and after, Dec '17 - Oct 18: https://i.imgur.com/M6yOfkK_d.jpg

A close up without the glare: https://i.imgur.com/irDSBLF_d.jpg

Of course, if you have any feel good stories about your mom's cousin's barber's girlfriend that had a small firm shiny lesion that changed this significantly over the course of a year or so, I'd be glad to hear them in the meantime!

AB

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Antonio's picture
Replies 7
Last reply 10/21/2018 - 7:06am
Replies by: Anonymous, guynamedbilly, Julie in SoCal, MelanomaMike

Hey guys 

at the beginning of September my father had 6 treatment of radiotherapy in his mediastinum .

He was feeling quite well before it , but the night between the 5th and the 6th treatment started to suffer of severe dyspnea and atrial fibrillation .

All doctors says that is mainly due to his melanoma but before the treatment he was feeling pretty well and having a normal life . Now he is on cortisone and other thousand of medicine and he was forced to stop keytruda  and he feels always very tired with no energy 

I was wondering if there s anybody in the forum who experience such a strong side effects from

radio  and for how long 

cheers 

Antonio

 

 

 

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RichInLife2's picture
Replies 3
Last reply 10/20/2018 - 8:20pm
Replies by: lkb, Bubbles, Julie in SoCal

It's election time here in Connecticut and many voters are showing their preferences with signage on their property. Now, this post in no way represents a politcal endorsement of any kind, but every time I drive by a house with this sign in the front yard, I smile.

https://pbs.twimg.com/media/DkBBIfUUUAA7Mdd.jpg

Have a great weekend everyone!

 

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swalters1038's picture
Replies 2
Last reply 10/20/2018 - 2:46pm
Replies by: GreggL, MarkR

I can't say that its been the easiest year by any means.   We said goodbyes to my dad after a 16 month battle with pancreatic cancer, said good bye to my wife's mom in August after a 12 month battle  with pancreatic as well, and somewhere inbetween I was diagnosed with stage 3c melanoma.  The melanoma was found in an intra glandular lymph node in my left parotid gland.  I could go on in detail, but long story short it was found in another lymph node and the extra nodal extensions had invaded a portion of my neck muscles as well.

My mom said it best when dad passed "You still need your Dad at 35".  I find my biggest struggle with the diagnosis trying to reconcile that with my 4-year old and the one on the way. The surgery, radiation, and chemotherapy (tafinalr mekinist combo) has already stole so much time, and energy (mental and physical). I'm tired of how this diagnosis defines my life, how people look and treat me differently...I'm the same person with the same everything aside from a 12 inch scar and a 40 pound weight loss.

Overall, I think we have taken this in stride, handling it pretty well, and staying pretty positive aside from the momentary drift to all the "what ifs".  

Steven

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/20/2018 - 12:10am
Replies by: Janner, Anonymous, doragsda

Any thoughts on using Moh's vs WLE for clearer margins?

Already had a excision for removing a legion which turned out to be superficial spreading stage 1a

breslow depth of .07 with /mitotic 1mm with no ulcertion

Excision showed clear margins of 4mm, my plastic surgeon wants to take total 10mm in a few weeks to be double sure.  Had a second opinion and Moh's surgery was mentioned.  I am not  worried about a scar which will be considerable after the 10mm excision, just want to choose the best procedure to make sure all is clear for best prognosis.  Thanks for any info!  

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Apalmer1986's picture
Replies 1
Last reply 10/19/2018 - 4:11pm
Replies by: QuietPoet

Hi all!

in early 2015 I had a suspicious lesion removed from my perineum. I had just had a baby, was a hormonal mess and waiting for the biopsy results was killing me. I’m a periop nurse and worked mostly with ENT docs at a large hospital removing melanoma all the time! Now I’m at en eye center and Actually as I type this we are removing an eye for ocular melanoma (I’m just charting right now). This has made me over paranoid as I had seen some really sad cases and LN biopsies and such. Any way after a week of agony and constant worry it turns out it was a genital lentiginous compound Nevus with mild to moderate atypia. The dr did decide to go back and get clear margins so that happened and then I was done. I asked fern if I should return for skin checks and they said no need. 

 

Fast forward to 2018. No real changes now except the year. Yesterday, my manager told us all that her daughter who is 38 has malignant melanoma and has been battling it since 2012. She was about to celebrate 6 years without recurrence and then her recent scans showed tumors every where. We were all upset and she is receiving new treatments in order to extend her life. This brought me right back to my fears of melanoma. I thought I would ask this lovely group of knowledgeable individuals: is there anything else I should do to follow up with my lesion that was removed? Would you have skin checks without any melanoma or known familial melanoma risk? I have terrible anxiety (who doesn’t) and sometimes I’m sucked back in to the terrifying feeling that I may have melanoma. I applaud you all and bless you for sharing your stories. I’ve been following this forum since 2015 during my scare and am more diligent with skin care than ever!

 

any thoughts or foresight any one can offer will be helpful.

 

thanks in advance!!!

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/19/2018 - 9:24am
Replies by: mandyjill, Anonymous

Has anyone gotten a diagnosis and not done treatment? My grandma is 91 years old and she has had breast cancer twice and just had her breasts removed she also had ovarian cancer. She hasn’t done one treatment because she doesn’t believe in it. Is the power of prayer a better cure than what’s out there now or is she just one of the lucky ones

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Sherrylc's picture
Replies 3
Last reply 10/21/2018 - 1:34am

Hi

I am one injection away from finishing my interon treatment. That’s all that is available here for phase 3b. I am battling to understand what comes next?  Is it just scans and blood tests now for the rest of my life?

 

is there something I should look out for? What’s next for me do you just live with the uncertainty forever?

 

 Thanks Sherryl 

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MelanomaMike's picture
Replies 4
Last reply 10/20/2018 - 8:03pm

Hay ya'll, quick update, Onco just called, starting back up on the ol'Nivo bandwagon! Good! I had it in my head i was gunna pick back up after my surgery! Cool!, get a nice shot of Nivo with a Sodium Beer Back! I miss the ol' nurses over there!...
To remind you, all tumors did respond to Nivo (and Yervoy) even in its smallest way that it did, they didnt grow! They didnt shrink either but ill take stability! Well one did (i almost forgot) the left lungs once 2.4cm is now 0.9cm..almost forgot that lil sucker haha..Monday i go in...love ya all...

Im Melanoma and my host is Mike..

www.covvha.net

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Melissa1987's picture
Replies 4
Last reply 10/20/2018 - 3:20am
Replies by: MarkR, Melissa1987, JennH, Janner

I know it’s not possible to diagnose unless getting a biopsy but I will be getting one in a few weeks nowhere else can get me in and I’m scared. I’ve had this mole my whole life (that I can remember) i just noticed it started looking bigger in a month or so. It’s probably 4mm or so. Maybe one color or two. I just had a baby last year I’m not ready to cash out any time soon.

 

https://imgur.com/a/xVGNYfn

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Melissa1987's picture
Replies 4
Last reply 10/18/2018 - 10:24pm

I have an ugly mole that is growing and I’m having issues finding a dermatologist who isn’t scheduling way far out in advance. One isn’t taking people until March the other isn’t taking anyone until January. I did find one for December 6 which isn’t too far out but I don’t feel like I should wait that long. I’ve called every one near me and they are absolutely no help and don’t seem to care. I am not sure it’s melanoma but it’s a good chance from the research I’ve done

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