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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stephlovins621's picture
Replies 3
Last reply 10/13/2016 - 9:55pm

Back in 2013, I noticed a mole on the left upper side of my back. Being an ignorant fool, I disregarded the fact that it was growing and continuing to look suspicious up until July of 2016 when I finally had it removed. The look on the dermatologist's face said it all, and being a nurse myself I knew ultimately what I was up against. Needless to say, she removed the entire mole for good measure and confirmed that it was in fact melanoma. 

I'm currently 29 years old with a 6 month old baby girl so hearing this sent me into a full blown panic. I felt such anger towards myself for feeling invisible to sickness; I should know that in my line of work, I see people of different ailments at different ages every day! Why didn't I get this taken care of earlier? 2016 blessed me with my daughter, but now is the year I'm reminded of how health isn't something to take for granted. 

I met with the Melanoma Cancer Center at the University of Michigan in August and was told my mole was 0.81mm Breslow thickness, however the way the mole was presenting, they suggested performing a wide excision as well as a SLNB to rule out any lymph node involvement. Of course I was given a 5-6% chance that it spread so of couse I felt relieved! 

Guess luck wasn't on my side...the wide excision showed no traces of melanoma (which was to be expected) however the SLNB showed that THREE nodes in my left axillary lit up and had 1% of melanoma. If it had been a 1% spread to one lymph node, they said they wouldn't have given much thought to it, but the fact that three nodes lit up changed the treatment plan. Again, I felt like a fool thinking "of course it'll come back negative and all I'll need to do is skin checks for the rest of my life! No big deal!"

I'm awaiting the call to schedule my CLND to see what exactly we're dealing with. I'm not going to sugar coat it--I'm terrified. Regardless of the results of the CLND, they're referring me for further treatment where they'll suggest either Interferon or "waiting it out". I'm trying my best to stay off the internet, it only makes me more fearful, but it's the planner in me that wants to be two steps ahead already prepared. It's scary to think about cancer cells potentially floating around, having absolutely no control over them. I pray that perhaps the 1% is on my side? To give me some glimmer of hope? 

Regardless, my heart and prayers go out to the victims of melanoma fighting the good fight. I thank you for your time in reading my message and please know that even though we have never met, I'm thinking of you and praying for you. I'm thankful for this site to use as both a resource as well as a support system and I'm thankful for any tips or advice from you all :) 



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snow white's picture
Replies 3
Last reply 10/13/2016 - 2:48pm

Just a quick update.  They have postponed the surgery for today.  They are treating him with Decadron (steroid) to see if they can get the swelling to come down without surgery.  He is still unable to walk or move much.  He is so AGGITATED, holy cow!!!  He is talking very loud, a bit confused, and more frustrated than I have ever seen him.  They are doing a 2 hour MRI on him today, from head down to shoulders, also bringing in PT to evaluate.

Whew....another day on the Roller Coaster.  Thank you all for your kind words, it means more than you know.



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hutch562's picture
Replies 5
Last reply 10/13/2016 - 2:48pm

My husband was diagnosed with stage 2a malanoma on back.  Sentinel lymphnode positive and two other lymphnodes are negative. Finding in sintinel was a 1.5 millimeter and is postive for extracapsular extension.

  Met with a sugical oncologist and he reccommends a radical auxillary lymph node disseciton after Ct and Cat scan are done.  He feels the scans will be fine.  I have seen research out there that advices againt a radical dissection as it does not improve odds but talking to this Dr and a Oncologist specialist at Johns Hopkins feel not enough evidence is out there to support not doing a radical dissection.  Can anyone give me any advice.  And what treatmen for the melanoma should we expect after the dissection?  I want to treat this smart and aggressively.  My husaband is in great health and is only 53.  Would like to see grandchildren one day.  I apprecieate any infor any one can give us.  I am scared and trying to stay strong for him.



LIsa Hutchison

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jennunicorn's picture
Replies 23
Last reply 10/13/2016 - 11:49am

Recently I had a needle biopsy of a groin lymph node and an armpit lymph node based on size growth and SUV uptake from my last PET/CT scan. 

Just got the news that the groin lymph node came back positive for melanoma. The armpit one was negative, but, my oncologist did say that her clinical observation is that the armpit one has been growing over the past couple of scans and the uptake was on the high side this time, she wouldn't be surprised if there was melanoma hiding out there and the needle aspiration just didn't pick it up. But who knows.

So, it's kind of a weird area to be in. Still stage 3, but can be called unresectable in order to have the door open to more treatment options. I guess 3C would be technically correct? 

I will be getting an appointment to talk with my onc in person next week for a more in depth conversation. Would love help from you guys, as far as questions I should ask, treatments I should ask about, thoughts on this?

They are testing this sample for BRAF, since I did not get that done initially, so now I will know whether I have even more treatment options in my toolbox or not.

Ironically this very day a year ago I had the really ugly weird mole removed and biopsied... and here I am a year later... Apparently October isn't my month! 

Jenn -  IIIC

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Hello everyone!

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mass spectrometry based lipidomics  are hydrophobic or amphipathic small molecules which include fats, waxes, sterols, fat-soluble vitamins (such as vitamins A, D, E and K), monoglycerides, diglycerides and phospholipids. The crucial role of lipids in biological physiology is evident not only in energy storage and structural components of cellular membranes, but also in signal transduction, membrane trafficking and morphogenesis.

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Samsmom's picture
Replies 7
Last reply 10/13/2016 - 3:57am
Replies by: Anonymous, Samsmom, ilikepralinen, debwray, Ed Williams

Hi everyone. I am new and just last week was told I have melanoma. I went to a dermatologist to have a mole looked at and they immediately removed it that very day. I got the results of the biopsy back and was told it was Melanoma and that they would be removing an extra cm from both sides of my original site. They said that it was likely that it was completely removed and this sample would probably indicate there are no cancerous cells in the surrounding tissue. However, how would they know for sure that nothing had spread to the lymph nodes? 

I live in Germany and have only been here for a year, so my German is not as good as I would like it to be. My doctor speaks great English and is very kind and thorough and is supposedly one of the best around, so I trust her. However, I didn't even know what she was talking about as far is it being melanoma and what any of it meant. I feel stupid for not reading up on it beforehand, but was only expecting to turn up to get my stitches out, not to have another biopsy done. 

They sat me down and asked what questions I had, but I didn't even know what to ask! I also didn't even ask to see my findings because they were in German and I knew I wouldn't be able to read them correctly. 

I feel lost and silly for not knowing what to say or to even comprehend what was happening. I go in for a bandage change tomorrow and then to have the stitches removed in 2 weeks. Is there anything I should ask? Do i need to have any further tests done? Is there a chance that it could have spread to the lymph nodes? What should I look for?

I'm continuing to do research, but I am being careful not to google to many things for fear of freaking myself out. Any advice or help would be so greatly appreciated!

Thank you!


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Aida Ballesteros's picture
Replies 2
Last reply 10/13/2016 - 12:37am
Replies by: jennunicorn

My dad was diagnosed with melanoma in situ last august. Today he told me he had something bothering him in his hade, just up his ear. since its sorrounded with hair he told he he hadnt noticed it until it started hurting. I just saw it today and i really dont know if its a pimpple or a mole. It feels bumped and it has like two little holes just where the hair grows, how can i know the difference???
Maybe im overeacting but who can blame us after this diagnosis??
Thank u!

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Anonymous's picture
Replies 1
Last reply 10/12/2016 - 10:45pm
Replies by: jennunicorn

I'm second guessing some things tonight or overthinking maybe but for stage 1a .40 thick clarks level 2 no ulceration.. should I have had a SNLB? All I had was a WLE. Just wondering. 

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Anonymous's picture
Replies 3
Last reply 10/12/2016 - 10:12am

Hi, I have just had a (quoting my family doctor) "scary looking thing" of a mole cut from my left labia majora. I understand this is a forum for melanoma patients and I have not been diagnosed with melanoma yet so I hope this is not inappropriate to post but I figure that you may be able to help me interpret what my doctor has told me so far.

first of all, im 18years old (female obviously) and suffer some anxiety/panic attacks so this is experience has been quite uncomfortable. I have had this mole on my left Labia majora since as long as I can remember - possibly since birth. I first brought it to the attention of my mum I think when I was around 8 years old. Naturally, she thought we should get it looked at asap so took me to one of those medical centres because you get in straight away no appointment needed (a bit like supermarket medicine I have come to think). I distinctly remember the doctor (who was a young girl probably not older than 28 or so) saying it was a blood blister that would probably go away. Even at 8 years old I think I knew it wasn't but didn't give it much more thought till my teens. Because of the awkwardness of its location I didn't bring it up with anyone again, until 2 or so months ago when I noticed it has POSSSIBLY gotten the slightest bit bigger. I decided to make an appointment with my doctor to get it out, which to be honest was mostly because I thought it was embarrassing to have (and I had not at all considered melanoma nor knew anything much about it). knowing I wanted it to be taken seriously enough that he would remove it, I told the doctor it has definitely gotten a little bigger (this is the first time he's known about it). He took a punch biopsy, two stitches later, sent off the piece and the pathology test came back benign though I didn't read the exact report. after u had the two stitches out I went back and he told me I could either leave it or remove it, but that the nature of the mole was between the two layers, the epidermis and the dermis (or somewhat within both I'm not sure of his exact words) and that it would grow wider. I think he said something about that aesthetically I would want it removed (and I already do so said go ahead and take it out). He took a biggish chunk and gave me six stitches, and sent that off for another pathology test. I went back yesterday to get the stitches out and the conversation went as follows: 

"I've got good news and bad news for you, good news is that I got it all out, bad news is they want a second opinion on the pathology test". I asked him what would happen if it came back as melanoma and he said "oh well we'll deal with that when we come to it". This freaked me out but I kept my cool until I got home and actually read the pathology report, which he gave me this time. 

This is what it says exactly: 

"clinical notes: left labia lesion, suture marks lateral end of leaion. Wider excision of s16/150481. 

Macroscopic examination: the specimen consists of an ellipse of skin 18x8x5mm beating a brown macular 9x7mm. A sature is present at one poor designated as 12oclock. 

Microsopic examination: the sections of the previous biopsy were reviewed and the findings confirmed. This re-excision specimen shows central dermal scarring and mild inflammation in keeping with The previous biopsy. There is an overlying mild increase in junctional melanocytic activity throughout, with minimal atypia. there is no pagetoid epidermal spread or any other features of malignancy. These changes come within 1.0 mm of each radial margin. 

The possibility of an atypical vulver naevus was considered but the changes appear reactive and Insufficient  for this diagnosis. However, in view of the patients age and if the site of the lesion, further opinion from RPAT [this is my country's major/best hospital / melanoma clinic I have sinced researched and realised] would be advisable. 

The sections have also been examined by other pathologists in the group, who agree with these findings."

ok so, I have two major concerns with this.

1. The mole being 9x7 mm which is beyond the 6mm margin designated for the ABCDE rule (given the nature of the skin at the site it definitely did not appear this big to me so this is a bit of a shock)

2. Now this is the major one playing on my mind. If my doctor did in fact "get it all out" (his words, not the pathologists as far as I can tell in the report?) then what is the purpose of the second opinion they are advising??? Since, from what I gather, they seem to think the mole is ok, I'm GUESSING if they were incorrect,  it couldn't be worse than stage 1 .. Or am I wrong to assume that they couldn't completely stuff up and that it potentially could be worse than stage 1 ?? (Please note what my doctor originally said about the layers epidermis and dermis)..  Ok so IF it is pre cancerous or cancerous and they discover that in the second option at the major hospital pathology clinic, then what does that mean for me ? If it is truly all out what exactly is the purpose of the second opionion? Could this imply that it may have spread beyond the site to lymph nodes if it was intact not a benign mole, hence the need for the second opionion? 

Or, as my mum is trying to convince me, is the second opion merely to confirm that it is being , because if it wasn't they would merely like to have on my medical record that I had a pre cancerous or cancerous mole removed and basically warn me to keep an eye out for other body moles...  I will also note, as my mum thinks, my family doctor is the type to 'sensationalise' things..

I might also mention that I will be waiting 2-3 weeks for the results of this second opionion, and that over these 2-3 weeks I have some very  important high school exams, and all I can think about is that damn second opinion and what that actually means. 

Thank you so much for any information/ interpretation you might have. 

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Hukill's picture
Replies 4
Last reply 10/12/2016 - 10:06am

On friday, 10/14 i get my scan at 14 weeks of ipi/nivo combo. I hope to not see the 7 mets in my lungs.

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Just go to:

Helps melanoma patients and families and raises awareness too!

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Pcarpent's picture
Replies 1
Last reply 10/12/2016 - 7:43am
Replies by: debwray

Anyone have this happen while on opdivo and what ended up being the problem? Scared for my husband.



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snow white's picture
Replies 5
Last reply 10/12/2016 - 7:31am

Dad had his Gamma Knife on Thursday.  On Sat. he started having a hard time walking.  On Sunday, he felt like he was spinning.  Yesterday, he still could barely walk.  Called doc today because he seemed worse.  Doc. believes he has a brain bleed and has scheduled a MRI later today and do a Crainiectomy tomorrow.

The Roller coaster ride begins.



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