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
Replies 4
Last reply 5/6/2017 - 10:40pm
Replies by: Janner, Anonymous

How do pathologist tell the difference between a benign mole and a malignant mole. They do shave biopsy at my dermatologist office, doesn't that produce a false benign if they don't get the whole lesions 

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Anonymous's picture
Replies 7
Last reply 5/6/2017 - 10:14pm



My dad had a few moles on his back biopsied.  One came back as an aggressive melanoma, about 3mm, ulcerated. He was referred to surgical oncology. He is having a WLE and a lymph node biopsy in a few days. We saw his medical oncologist and he is suggesting   postponing the surgery and having a PET scan and MRI. With insurance who knows when he will get the approval for the scans.  We want to go through with surgery first.
My question is,  what were you initial steps? Surgery first and then scans?

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Once you get on this train, for it is a very much like a train, there is no getting off.  My cancer journey started in July of 2016 and has been moving ahead full speed since then.  There are no breaks.  There is no time to absorb what's happening.  The doctor says "jump" and we say "how high".  

Looking back I have to say that I had a routine mole screen 11 years ago and had a suspicious mole removed.  It turned out to be pre-stage 1 and so I quickly had re-removal surgery.  I've had all my routine mole screens since then and they always told me not to worry.  I was perfectly healthy and doing fine.

When the initial lumps showed up the dermatologist told me not to worry and said it was just fatty tissue.  He didn't even want to biopsy.  I had to push very hard for over a month to get proper care.  Luckily my primary care was on my side and helped me get a biopsy, CT scan, and treatment.

Now I dread the appointments, the IVs, the blood draws.  I'm on immunotherapy and have had brain surgery plus SRT radiation for an aggressive brain met.  I know I have it easier than most so I shouldn't complain.  It's just that it takes everything from you.  First it takes the feeling of safety.  Then it takes your routine.  Next it takes your ability to care for your children and your ability to work.  So you go on short term disability and pray you can pay the bills.  You teach your husband how to cook and do the laundry and pay the bills.  You fantasize about getting to exercise and to drive your car.  What I wouldn't give for a half glass of wine.

The worst part is the look that almost everyone gives you.  I'm sure you know it.  The "you have cancer" face that they can't seem to hide.  No one knows what to say to you so it is awkward.  Even close friends get strange.  Then comes the barage of kindness.  Everyone wants to help so they call or text or send a note to let them know what they can do to help you out.  Honestly, I never know how to answer this question.  I end up thanking them and telling them I'll let them know.  

The cancer is in control now.  I can't slow down this train and I can't get off.  I just want to go back to my life.  Play with my kids and go to work and worry about whether the green shirt is clean for green shirt day.  Yes, this is an actual thing at my daughter's school.  So this is me trying to accept my diagnosis a full eight months after first being diagnosed.


Just another Jennifer

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Scooby123's picture
Replies 3
Last reply 5/5/2017 - 6:18pm
Replies by: BrianP, Scooby123, Bubbles

Hi all, update went for results today which was not back so consultant had to look at them for me. So he said brain looks ok still. Body liver, lungs still stable but tumour in lung lympth node grown 2mm but was not concernd due to he said within a year. I asked about treatment but he said no watch wait . Radiation not possible due to where it is could cause more harm.question anyone had tumours in lung lympth nodes and how big before treating them. He said it was 20.2 mm . scan again in 3 months time , he said it was slow growing .

scooby xx

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Anonymous's picture
Replies 5
Last reply 5/5/2017 - 12:52pm
Replies by: Bubbles, Anonymous, SABKLYN, Ed Williams

Hi All,

I was recently diagnosed with melanoma via a shave biopsy on a mole I've had on my chest since birth. 

The mole protruded about 2-3mm from my skin before I started getting some abnormal growth.  They did a shave biopsy but weren't able to determine the exact depth of penetration since it extended past the skin sample.

I've included the full report below for details of the specific diagnosis. I should also highlight that I'm a 40 year old, healthy male with a history of cancer in my family -- brain, prostate, luekemia, and one minor melanoma incident that was caught early (grandfather on my mother's side.

I'm meeting with my oncologist tomorrow afternoon, and I'm not sure exactly what questions I should ask.  

I would love any help on...
 - Questions to ask my doctor?
 - Other posts I should read that have similar diagnosis?
- Recommendations on other things I should be doing / reading?


METHOD: Shave Biopsy

LOCATION: Left middle of chest

- Melanoma arising in association with a nevus, Breslow thickness at least 3 mm, lesional cells extend to the base and both peripheral edges of the biopsy (See Comment Section)
- Ulceration present
- Mitotic activity: 12 mitotic figures/mm2
- Tumor infiltrating lymphocytes: Focally present, non-brisk
- No lymph/vascular or peri-neural invasion identified
- No evidence of regression
- Satellite metastasis:  N/A

This neoplasm is polypoid.  The lesional cells extend to the edges of the biopsy.  Therefore, complete excision of this lesion/lesion site with appropriate lesion free margins is advised.  Correlation with the excision specimen will be necessary to determine the final Breslow thickness. 


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MikeW's picture
Replies 5
Last reply 5/5/2017 - 11:16am
Replies by: MikeW, Mark_DC, jennunicorn

Looking on here to see if the group has some insight on possible next steps after pausing treatment.

Diagnosed on Jan 17 with Stage 4 with four lung nodules the biggest of which is about the size of a marble. 

I've gone through 3 treatments of Keytruda with the usual rash/itchiness and some nausa/fatigue. Over the last 2 weeks I've been hit hard with joint inflammation and finally a prescription of low does prednisone got it under control. 

Yesterday was supposed to be the 4th treatment (I go every 3 weeks) and followed by a scan in another 3 weeks. The blood came back that my liver counts were inching up so the doc said that given the inflamation, he wasn't too surprised and wanted to get in front of the other potential auto-immune issues by 1) pausing treatment, 2) hitting me up with a higher level of steroid for a short period, 3) re-check the blood on Friday and then re-assess. 

I know I'll know a lot more after the scan in a few weeks but can't help but think through the contingencies. 

Am I off Keytruda for good now? If so, what are the options if the scan comes back with progression? 

Thanks for any ideas/experience...



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I guess my mom is an odd case since she has ONLY brain mets with an apparently invisible primary. 

The chief neurosurgeon at our top hospital did her craniotomy and got the biggest of the buggers.

So now we've got a 1.8 cm at the front of left parietal lobe, 8 cm one in the left posterior putamen, and 3-4 ish mm one in the left frontal lobe right next to where the biggun (2.8 cm) was removed. 

Our radiation oncologist is also the chief of that department, and she said she thinks we will only need to do one gamma knife treatment, then scans every 2-3 months and more gamma knife if we have any recurrences (and probably will, that seems to be how it goes). 

She said that she looks at this more as "being able to manage something more akin to a chronic disease" than a doom and gloom death sentence.

This was the best news we could've hoped for, and we've even yet to meet with the melanoma specialist next week. 

If anyone as any input or comments, I welcome any and all :)

As a side note, my mom has been taking CBD/THC oil throughout this whole process. I know it's unlikely to have any curative properties on it's own and is mostly useful for symptom reduction (appetite, insomnia, pain, etc) but I'm also kind of wondering if perhaps it has contributed with the remarkably minimal edema she's had surrounding any of these tumors. Just something I'm curious about, because I feel like the lack of edema gives her a bit of wiggle room for treatments that might cause some.

Anyway, I'm super happy and just wanted to share with you all!!

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Bobman's picture
Replies 8
Last reply 5/5/2017 - 8:16am

So I  was  supposed  to be at UCSF  on the 9th. That's  been  canceled  as my insurance  has denied  me twice , and is now on appeal .  I thought , and was told that the appeal  was also cancelled , but it turns  out that my primary  care provider  doesn't  know  how  to do an appeal , and after being  held by the hand by the great people  at UCSF , the proper  paperwork  is now where  it needs  to  be . All the frustration  I have  experienced  navigating  the system  out here ,is now shared by fully  4 other people  at UCSF , who have been  in  constant  contact  with  me , really  going  the extra  mile to get me there. We have shared a laugh  or two on the phone after they receive progress  notes, instead  of pathology  reports  that were requested .  The  system  here is broken , and that's  putting  it mild. There have been uncountable  such diversions  in simple  routine  things  that should  take five  minutes  , stretching  into  months . 

In the  meantime , I'm  up to my 11th  primary . I have so many  more  biopsies  needed it's  overwhelming . My surgeon  and  I  are just playing  whack-a-mole. He has forwarded  a letter to my insurance  to get me to SF. Neither  of us  are  comfortable  with  the  fact it's just me and  him chasing  this around . Fully ,10 of my primaries  have gone unnoticed  by three  dermatologists . I have literally  had to beg everyone  of those dermatologists  to biopsy  what I knew was a bad lesion .  I am  flying  under  the  radar  with them.

I had family  support to financially  get me to SF after the first  two denials , but UCSF  is now talking  to my insurance  company , primary  care people  and anyone  else  needed  to move this along . They told me yesterday  to sit tight  possibly  another  month  to allow  the process  to unfold . They also  asked me if I   had ever had any genetic  mutation  testing  done, which I have not. They also  asked  if it can be done out here,and I actually  don't  know. This is the first  time that subject  has come up for me. Which brings  me  to  what I  need  some  help  with  from  anyone  of you that might  know . 

I am flying  to Honolulu  on Thursday  for a PET  /CT , and  a visit  with  my oncologist  afterwards .  I have only seen him twice before  for a grand total  of no more  than 15 minutes  of his time,combined . His only  comments  to me was that I looked fine to him considering  how much Melenoma  I've  had. That was referring  to just looking at me. This will  be my fourth  scan in 5year's . The first one showed a suv value of 3.8 in the rectum,followed  by unremarkable  colonoscopy. The second  one showed suv of 6.8 in same area ,followed by another  unremarkable  colonoscopy . Third one showed suv of 8.3,same exact area,followed by yet another  unremarkable  colonoscopy ,then a MRI which noted a 15 mm mass on my liver. That was a year ago,with no follow  up since. Just several  more skin primaries  since,and so many  lesions  coming  up ,I  can't  keep  them  straight . Not a word from my oncologist  about anything  I just mentioned . What should  I  be asking  for here? Genetic  testing ?  I don't  have a clue. I've  been  working  hard  as I can  just to get cut off what I can. I just want to go in with a plan since I know  I'll  get precious  few moments  with someone  who doesn't  know  much about  melanoma .  I just  have to keep  moving  this along until  I can get to SF.

Many  thanks  as always , 


We are one.

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stevenallenschwartz's picture
Replies 1
Last reply 5/5/2017 - 5:13am
Replies by: UBContributor

I just returned from Mt. Sinai (Dr. Lutzky). He is one of the melonoma specialists in Sout Florida. After turning NED after my 6 infusion of Keytruda, the question was how many more infusions. His honesty was sincerely appreciated; we don't know but I recommend 1 year of infusions every 3 weeks. I have a plan....

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AB's picture
Replies 11
Last reply 5/5/2017 - 1:11am
Anonymous's picture
Replies 5
Last reply 5/4/2017 - 10:32pm
Replies by: AB, Lydia, Cynlee

I have a mole on the sole of my foot. It appeared around 18 months ago but recently it became really itchy. When I looked it had changed, it appears to have grown legs! I went to see my doctor last Saturday, who referred me to a Dermatologist. They rang Monday and booked me in for Wednesday. I received a letter from my doctor with advise on 'cancer referral' - oh he didn't mention that! 

Anyway, I went to the dermatologist who had a look through the scope and photographed the mole, he spent about a minute looking at it and then said it will need to be removed. The nurse said I would receive an appointment 2-4 weeks through the post. I got a call today (Thursday) to go in tomorrow to have it removed (Friday) 


sounds silly but but this has me worried now the speed of it all! Should I be worried?? 

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josephsli's picture
Replies 5
Last reply 5/4/2017 - 5:46pm
Replies by: Anonymous, jessann, POW, josephsli, Janner


I am an Asian male, 34, and have had a mole-like lesion on my right arm since I was very young (or even likely born with it) for as long as I can remember, and more importantly, its size and shape has NOT changed at all since at least 15 years ago when my parents and I I started observing it. 

In late June, I went to see a dermatologist for a separate condition (a mole on my face), which the doctor very quickly dismissed as anything alarming but believed that the congenital nevus on my arm closely resembles the typical melanoma: blurry boarders, asymmetric shape, etc. The only counter-argument I had was that it has NOT changed at all for at least 15 years. The doctor then advised that a PREVENTATIVE full excision be performed, even it was NOT likely a melanoma due to my race, age, which I followed and the full excision biopsy was performed. 

2 weeks later (just today), the pathologist's report came back with a shocking melanoma diagnosis:

'right posterior arm, malignant melanoma, approx. 0.4mm tumor thickness with associated congenital compound nevus, 0 mitotic figures per mm2, nonulcerated, completely excised on all edges and in depth.

comment: ki-67 would be of value to better interpret the dermal cells which, although they resemble the epidermal cells, merge into areas of congenital nevus with areas of maturation.'

In 'layman's language', the doctor told me:

1) according to the 1st pathological reading of the biopsy sample, this is a malignant melanoma

2) based on info presented, it looks like a Stage I, but we have ordered staining (ki-67 is actually a protein)/enhanced specimen processing ('2nd pathological reading') to see if my melanoma cells are REALLY contained within the 0.4mm depth vs. having already spread

3) regardless of the 2nd pathological reading, a 2nd excision surgery needs to be performed ASAP to remove an even larger area, but the 2nd pathological reading will determine how deep/wide this 2nd excision will be. 

My questions at this stage is simple - could the 1st pathological reading have been 'a false positive', considering the fact that my lesion has NOT changed for at least 15 years (not months!)? I read somewhere that about 16% melanoma biopsies result in false positives, however they usually occur during partial excision (my case was full excision). Also to my 'disadvantage', both my dermatologist and his dermatological pathologist agreed with the melanoma diagnosis. 

Any opinion or references will be helpful. I have a loving and supporting yet vulnerable wife, a 3 year old girl, and a 25 day old son. Your prayers will be greatly appreciated.




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Anonymous's picture
Replies 1
Last reply 5/4/2017 - 5:14pm
Replies by: Polymath

Does anyone know how much of the brain is captured on a MRI of the face/orbit?  Got call from dr office and they scheduled me a  MRI of the brain for tomorrow.  Said that they may have possibly seen something showing on my brain.  I thought MRI was specific to the area, so just wondering what part of brain would show when doing a face/orbit MRI.  Thanks for any info.

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Bradley75's picture
Replies 4
Last reply 5/4/2017 - 4:09pm

A brief background before I share a poem that my 12 year old daughter wrote for her 7th grade English class assignment.  I was first diagnosed in 2007.  She has watched me progress from stage 1 all the way to stage 4.  She has been there for all the surgeries, radiation, hospitalizations and now immune therapy.  She has seen and been a part of all of this.  Her poem came as a shock to me and completely blew me away.  I feel compelled to share it with all of you. 

Cancer is a Journey

By Anna Bjorklund

Cancer is a journey with only two possible endings.  It's unpredictable and deadly.  The path is narrow and bending.  It's so easy to give up, and full-on quit pretending.

To fight it you need endless strength and impossible perseverance.  For it's a road trip of great length and a tragic, cruel experience.

The first sign of it is shocking.  It's something you just can't understand.  Not until you hear death knocking, do you know what's truly at hand.

But by then it's much too late.  Now you know you're out of time.  The journey is all done, you're Home.  There's no more ladder left to climb.

There are many rule to this battle by which you must abide.  First, you must give up your normal life and set your dreams aside.  Because deep inside, you know someday, there'll be nowhere left to hide.

It's tiresome and pointless, killing something you can't see.  For every puzzle piece restored, twice as many disappear.  Those who have lived this life agree; that the only hope we need is that there lies relief somewhere.

But the paint won't last forever.  Someday it'll all be gone.  This earthly body will turn to dust, but my new heavenly body will feel no pain.  In that I can trust.

My dad has melanoma.  This poem comes straight from my heart.  When he was young, he didn't use sunscreen.  Sharing this poem helps me do MY part!

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RitysMom's picture
Replies 3
Last reply 5/3/2017 - 7:14am

I'm at MDA this week with my daughter, Kristine. She was supposed to begin a clinical trial Thursday with pembro/azacitidine. She met with the dr yesterday and shared that she's been having headaches for a couple weeks now. He sent her for a CT of the brain and we just got the news that there are lesions on her brain. The dr is trying to get her into a neurosurgeon. It looks like this disqualifies her for the trial. We're devastated...I don't know what this means for her. Four weeks ago her brain was clear. She went off the taf/mek at that time and now they're back. I don't even know what to ask except where do we go from here?


Mom of the beautiful Kristine

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