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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Leigh S's picture
Replies 6
Last reply 9/7/2017 - 12:16pm

Morning all,

I recently had 2 x suspect moles biopsied and removed by my GP. One was clear but the second not so much. Have attached the pathologists report re the second one. To say this is absolutely terrifying is an understatement. Any help interpreting the report would be greatly appreciated!

' Sections show a biopsy of sun damaged skin extending to deep dermis with a junctional melanocytic proliferation. The lesion shows some features of irritation including pigment in incontinence and some pigment in the stratum corneum however there is assymetry to the distribution of melanocytes as well as some upward migration and cytological atypia of melanocytes with macro nucleoli. A sox 10 immunoperoxidase stain highlights the melanocytic proliferation. The possibility that this lesion represents a dysplastic junctional naevus with features of trauma is considered, however, given the constellation of features the appearance is best regarded as representing evolving melanoma in situ. The lesion is 1.1mm from the nearest inked margin '

 

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vpettis331's picture
Replies 2
Last reply 9/7/2017 - 11:30am
Replies by: vpettis331, Janner

Hello! Yesterday I went to the dermatologist for my first ever overall check. I just turned 30 and have spent a fair amount of time in the sun, so it was time.  After completing the examination, my Dr looked at two areas (one on my back and one on my left leg) with his dermoscope and advised me that he was going to need to do a shave biopsy on both. While marking the mole on my leg, he made the remark to his medical assistant that this mole was a "level 2" and she made note. The only thing he said was that they looked abnormal and that's why he was removing them, but they were probably nothing. After getting home and researching what "level 2" could have meant (just out of curiousity), I am beginning to become concerned that he suspects Superficial Spreading Melanoma due to the moles age and characteristics.  I have had this particular mole for as long as I can remember and it used to be perfectly round, but has grown jagged/asymetrical borders and changed colors over the last couple of years. I learned about ABCDE and the mole on my leg has/had several attributes of a SSM. Anyone else have a similar experience or know what "level 2" could have meant?  I am not one to make a "mountain out of a mole hill" and I am genuinely curious as to what "level 2" refers to.  I am a little embarrassed to say that I clammed up and didn't ask because I was intimidated because the Dr was outrageously good looking HAHA. Usually, I would have asked right then.

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Chelle White's picture
Replies 2
Last reply 9/6/2017 - 11:12pm

No staging yet. Saw dermatologist end of June - sent to Plastic Surgeon 5 weeks later - thought I was getting them removed then -nope just a pre-appointment. Cried so he biopsied one - 2 weeks later went for follow up and path report came back as .55, level 3, mitotic rate 1 - scheduled flap surgery for 9/5. While waiting for surgery called reg physician for my questions - never heard back. Called derm - she explained we wish to see insitsu but mine was level 3 in testicular. Asked her what I need to do - she said I'll need to make appt with oncologist once the surgery takes pla e and pathology report comes back.
Went and called an oncology center telling them my surgery wasn't until 9/5 So they scheduled an appt for 9/21.
There's been no blood work and I didn't have any biopsy or that dye thing with a lymph node.
I feel lost - what am I missing? What should I be doing? What should I be asking? I feel like this has been going on too long without answers.
I go on Friday for bandage changes. Haven't had to use my rx'd painkillers. Slightly uncomfortable but not horrendous.
Thank you.

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Lbell's picture
Replies 3
Last reply 9/6/2017 - 3:07pm
Replies by: MovingOn, SABKLYN, Janner

I'm waiting on pathology tests (14days is a long time) but the dermatologists has already stated that he thinks  it will come back "high class melanoma", anyone familiar with this non medical term for classifications?

I went to the dermatologist for a completey unrelated matter and the Dr in mid sentence grabbed my arm and said we need to biopsy this. At first I laughed off his eagle vision but I think now I'm just relived that his clincial skills picked up on something not related to the reason for the clinical visit.

 

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2ndTimeRound's picture
Replies 4
Last reply 9/6/2017 - 11:28am

Hi All,
I received news today that one of the moles taken out last week is in fact a melanoma. This after just a little more than 5 years since the last one (which was my first). Because I go for regular check ups, we caught it early and doc says it's superficial. What I want to know is whether anyone with a superficial melanoma has experienced fatigue, dizziness and intermittent nausea. I really haven't actually been feeling physically well the last few weeks but don't know if it's just fear and paranoia. I'd live to hear from you if you've had similar symptoms at the same stage Thabk you!

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Patina's picture
Replies 2
Last reply 9/6/2017 - 9:55am
Replies by: cancersnewnormal

Hi All,

Well up until infusion #32 all has gone great, but with #32 my Mom suddenly had a lot of issues with diarrhea and vomiting (intermittent). The doctors have ruled out colitis, micro-colitis and a host of parasites, bacteria and viral infections. They did find that she has a yeast infection in her esophagus. - She's not been able to consistently control the diarrhea and the vomiting has been here one day, gone for a few and rages back with lots of diarrhea...

Removing raw veggies, fruits and lactose hasn't worked and she's back in the hospital while they try to figure it out.  It's all very strange, has gone on for over 2 weeks and my Mom has lost 17lbs.  The idea of medication induced malabsorption syndrome is just 24 hours old (along the lines of what I've been saying - she just isn't keeping anything down), but enzymes haven't worked since she started them.

Anyone ever had any issues like this or hear of any?  My active 81 year old Mom is weak and is going to hate being the hospital while they figure this out, but it is the best place for her.

Thanks!

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pattikella's picture
Replies 1
Last reply 9/5/2017 - 7:34pm
Replies by: Bubbles

I just found out that I have mucosal melanoma in my cervix.  My Dr. ordered chest x-rays and abdominal ct scan.  I have been reading, and it looks like this can spread to all parts of the body, including eyes, brain, arms, and legs.  Should I be checked all over?  Maybe I am over reacting, I don't know.  Also, what does the acronym NED mean?  I've seen it a few times on this site.

Thanks

 

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adriana cooper's picture
Replies 21
Last reply 9/5/2017 - 5:48pm

Last night at about 8 PM my best friend, my wife, my world, left all of the pain, the medicine and all of the other nonsense in this earth behind. She was in the comfort of my arms around her, (her comforting me,) with our family at our side. Although, the fighter that Adriana is, it did not seem easy for her, I hope that I was able to keep any pain and discomfort in check for her and that she was only able to feel the immense love that I have for her.

I would like to thank the many people on here (Celeste, Maria, Samantha Stamps, Glen and Loretta Vangampler (Artie's parents), Connie and the many numerous others) as well as friends on other melanoma websites over they years for the support and guidance that you have provided us. It has been my pleasure and honor to care for and share the largest part of my life over too short of a time.

Live your lives to the fullest and don't take it for granted no matter what stage you are in. Educate yourselves and others so that you may survive this horrible disease. And may the researchers  please double their efforts to find a cure, and compassion for those that need a chance at the various trials when they have no other choice, everything to gain and nothing to loose.
Along with her son, brother and father that have gone before Adriana, may those that have left this world due to this disease before her welcome her and comfort her with their arms around her and guide her down the path to eternal happiness.

Adriana, I have a hole in my heart and emptiness in my life without you. I love you.

Best Wishes and Thanks to All
Rob Murphy- Best Friend and Husband to Adriana Cooper

https://www.melanoma.org/find-support/patient-community/patient-stories/...

Adriana

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Shaneswife's picture
Replies 36
Last reply 9/5/2017 - 2:03pm

Shane left this world at 13:20 est. I'm beyond devasted. 

 

Janis

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MK7's picture
Replies 4
Last reply 9/5/2017 - 9:50am
Replies by: MK7, Janner

It was suggested I put ATTN Janner/regulars as you are all so full of knowledge :) Anyways, was looking to see if anyone could help with "interpret" my pathology report. Long story short, I'm 30 now and had a mole biopsied when I was 20 when I casually asked at a derm appt if it looked ok, to which my derm said it was probably ok but would take it out anyway. At my follow-up he said I was good to go, so I assumed it wasn't bad (hey, I was 20 and didn't know to ask questions).

Fast forward to today, after having my kids I went for a skin check because I was concerned about one mole. Between my last two yearly checks my current derm biopsied 3 - two were mildly atypical and one was moderately atypical (which I had completely excised in July). So this all got me thinking about the one I had biopsied when I was 20 and if it had been moderately atypical I want it out. I got a copy of my path report (that derm who biopsied it is no longer in practice and it is too long ago to obtain the slide for my current derm to look at). I gave it to my current derm to look at and he said he wouldn't be able to tell if it was mild or moderate without the slide, but can pretty much "guarantee" if it had been severe my other derm would have removed it all. In the meantime he said we will keep an eye on the scar area (there is some pigment regrowth, but my derm is ok with that as long as it doesnt look "off" or go past the border of the scar).

I will also ask my derm at my appointment next year, but since my last appointment I've been wondering about the first path report, SPECIFICALLY the last sentence and if it means something else is going on/seems to be an immune response going on??? Here is the whole thing:

 

Dx: Melanocytic nevus, compound type, with focal architectural disorder

"There are melanocytes, singly and in nests, at the dermoepidermal junction, bridging between some nests, and concentric and lamellar fibroplasia in the papillary dermis. The epidermal component of the lesion extends laterally beyond the dermal component. Within the dermis there are nests of uniform melanocytic nevus cells. There is a superficial, perivascular, lymphohistiocytic inflammatory infiltrate with melanophages."

Not that I totally understand what it says, but the sounds of the last sentence makes me kinda just want to have my derm take the rest out anyway...Thanks everyone!! :) 

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dmarie's picture
Replies 7
Last reply 9/5/2017 - 12:19am

My husband was recently diagnosed with metastic melanoma. Today is 2 weeks since the initial MRI showed "multiple lesions". 8/21 GP visit, followed by MRI and admission to hospital; 8/22 abdomenal, pelvic and chest CTs & MRI; 8/23 brain surgery to remove largest mass. 1cm cancerous mass surrounded by 3x4cm bloody cyst. They knew it was metastic because of scan images done day prior. 8/24 released from hospital; 8/25 neurosurgeon called with news from pathology that it was melanoma. 8/28 1st office visit with radiation oncologist who recommended "whole brain radiation" given that there are 13 lesions remaining, scattered in the brain. Tomorrow we meet with SCCA (Seattle Cancer Care Alliance) melanoma dr for second opinion and more information. 

What can I expect from this visit? This all seems to have happened so fast. But I wonder if we are not moving fast enough at the same time. 

He looks great and feels pretty good. He has some digestive issues - meds? tumors in liver? other reasons? His language and cognition were pretty much fully restored after the surgery. He is getting his ducks in a row (getting all financial and insurance information accessible to me, looking at meal plans (paleo mostly), selling his dirt bike and our RV as these are 'clutter' that we don't need at this time). I have been reading forums and getting information, and I think he has avoided learning how insideous this can be/is. (I have been grateful for this period of 'blissful ignorance'). But tomorrow will be our first experience with a Cancer Center, and we don't know what to expect. Any insight would be so appreciated. 

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Anyone have any good info on these things?

Shannon B

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Megara984's picture
Replies 1
Last reply 9/4/2017 - 8:01am
Replies by: Patina

Hey all. My husband just had round 3 of the Opdivo/Yervoy infusion... His persistent cough is getting  better and slowly going away but we now how the problem that he is overly phlegmy. Anyone else have this issue and any remedies for it. It's at the point where it's effecting his eating. Thanks. 

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warreri's picture
Replies 9
Last reply 9/3/2017 - 8:22pm
Replies by: warreri, Bubbles, Anonymous, maryb-z, Ed Williams

Hey, last time I posted I was stage 2 and set to get a skin flap procedure done to do the WLE. Pet scans were coming back fine and the taf/mek combo did me wonders (but I now wonder if my inconsistent taking of those meds led to worse results later on). From the sentinel lymph node biopsy during the procedure they found a metastic tumor in one of my lymph nodes and the fat surrounding it. I had another round of radiation to address that. Now 6 months post surgery I have "in transit" lesions. I started Yervoy this past friday and hope that will be enough. Thankfully I have more of an incentive to hold myself accountable for receiving the treatment since it will be obvious if I don't. Does anyone else have experience with intransit lesions and have any advice to impart? I didn't know it was a thing until I read my drs notes. I'm dishearted by my personal experience with advancing stages even while receiving treatment (and reading of others doing the same on here). I really hope it doesn't spread further. 

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Anonymous's picture
Anonymous
Replies 14
Last reply 9/3/2017 - 6:36pm
Replies by: Cjodonn, KatieB, Tra88, CatHar12, natasha, Anonymous, Janner, MichaelFL

I was diagnosed last year with 1a SSM on my back.  Breslow 0.33mm, no ulceration, one mitotic figure identified in dermis (mitotic rate listed as <1), because of that mitotic figure in the dermis vertical growth phase listed as present (early invasive vertical growth phase), Clark II (I know this is not used as much nowadays).  Had WLE and SLNB (I know it wasn't necessary with 0.33, but I pushed for it), results were clear.  I'm very worried about recurrance/metastasis down the road, because of the vertical growth phase invasiveness.  I don't have a good handle on my prognosis, because even though stage is 1a, Breslow is thin, etc.....it seems like of the thin melanomas, I'm in a high risk category because of VGP and dermal mitotic figure identified.  So, I'm really struggling with this.  What would my prognosis really be with this?

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