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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Ohio mom's picture
Replies 3
Last reply 5/12/2018 - 5:06pm

Hello,

First, thank again to all of you.  I hope that I can be of comfort and “some” knowledge to future posters as I begin to learn more about this cancer.

im sorry this is so, so long but I am hoping someone can help me get answers to all this verbiage.  A long weekend is hard to wait to try to get answers from the Dr.  so if anyone can help me-it would be greatly appreciated.  Compared to my first pathology report, this one has so much info and I know so little that it’s frustrating and scary.

As I stated, I had a shaved biopsy that came back as malignant melanoma-superficial melanoma of my upper arm-left anterior distal.  This was the report.

Breslow thickness-0.5mm

ulceration-not present

regression-not present

mitotic rate-<1 per mm2 (none present)

L/P/A/I-not identified

tumor infilitrating lympocytes-brisk

Associated melanoctytic nevus-not present

deep margin-involved

peripheal margin-involved

Stage-at least T1aNxMx

Next appointment was with a surgical onocologist for a deep punch biopsy and they state that I have caught it early and after I stated I thought I should have a sentinel node biopsy, he thought it was unnecessary.

i kept waiting for my test results.  And called the center, which is huge and busy and finally messaged them and found out my results were not in, but would go ahead with the wide excision surgery.

next appointment-one week and a few days later after punch biopsy, I am at the surgical center and the Dr had to call the pathologist for the results which they stated had no residual signs of melanoma present.

so I have the surgical procedure done and then the next day I ask for my pathology report and it states that this is what they have concluded from my FIRST biopsy, not the punch whole biopsy from the surgical onocologist.

this is from the slides of the shaved biopsy from the dermatologist and their interpretation.

if you could help me understand this before I meet with the surgical oncologist in 2 weeks, (I hope to talk to him sooner) I would greatly appreciate it.

microscopic examination:

Sections of specimen A show skin excised to include subcutaneous tissue.  Near the center of the specimen, Reyes are effaced with organizing granulation tissue and a patchy chronic inflammatory infiltrate in the underlying dermis.  Adjacent to this area, individual and nested atypical melanocytes are present at the dermal-epidermal junction.  Scattered atypical melanocytes are present above the basement membrane.  A prominent chronic inflamatory infiltrate is presentbin the dermis and makes identification of any possible invasive component to this lesion difficult on hematoxylinand eosin-stained sections.  Immunoperixidase staining for HMB-45 is positive for melanocytes at the dermal-epidermal junction, above the basement membrane and Fox ally in adnexal stuctures.  Rare HMB-45 positive cells are present in the superficial dermis.

Immunoperoxidase staining for Melan-A and Ki-67 was performed on a single slide cut from block A1.  Melan-A is positive for individual and nested melanocytes at the dermal-epidermal junction, above the basement membrane and in adnexal structures.  Some background staining is present in the dermis; however, a few melanocytes are present in the inflamed dermis.  Immunoperoxidase staining for Ki-67 is positive for the nuclei of basilar keratinocytes as an internal control.  Many of the Mela-A positive cells at the dermal-epidermal junction coexpress Ki-67.  Occasional Melan-A positive cells in the dermis also stain positive for Ki-67.

 

Synoptic report:

malignant melanoma

type-compatiable with superficial melanoma

breadth (diameter of lesion) not given

level of invadionClark’s level II-early III

depth of invasion-0.7mm

radial growth phase-not identified

mitotic count-0/mm2

regression-not identified

precursor lesion-not identified

Blood vessel, lymphatic and neural invasion-not identified.

tumor infiltrating lymphocytes: present; brisk

satellite nodule-not identified

margins- the in situ component of this lesion extends to the lateral specimen borders. Melanocytes in the dermis extend to within approximately 4.5mm from the biopsy base.

AJCC pT1a stage lesion

final evaluation of this lesion with respect to prognostic factors would require histology evaluation of the completely excised lesion.

complete excision of this lesion is recommended.

 

Thank you for taking the time to read this.  I don’t take your time and effort for granted.

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Anonymous's picture
Anonymous
Replies 10
Last reply 5/18/2018 - 12:36pm

My 17 year old son was diagnosed in February 2018 with 2.4mm malignant melanoma tumor when he had a mole removed from his scalp. We have since been through the surgical process, WLE, positive sentinel node biopsy for microscopic melanoma metastasis, and just last week he had his parotid gland removed and a neck dissection. We are awaiting the pathology results from surgery and we will be starting adjuvant immunotherapy, Opdivo infusions, regardless of the results in the next couple weeks. We are Stage 3, but no  subclass yet, pending the surgical pathology reports. I am not a fan of the “wait and watch” approachand I feel the benefits of the immunotherapy definitely outcweigh the risks at this point. He is young and otherwise healthy and I am praying that will work in his favor.  I am a nurse, a neonatal nurse. That is the farthest thing from an oncology nurse. I have submerged myself in research and have read and learned more about melanoma then I ever thought possible.  I have read good and bad, and no matter what I read I find myself just completely overwhelmed at times. My son definitely handles this better than I do. He is a great patient and he amazes me everyday with his strength...one week post op and he is already ready to be back playing sports and leading a normal teenage life... The surgeon is confident with treatment my sons prognosis is “excellent” the oncology team is much more cautious when speaking with us.  I just need to know I am making the right decisions for my child. 

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Anonymous's picture
Replies 1
Last reply 5/12/2018 - 1:06pm
Replies by: Janner

Hi

i am wondering if anyone can help me out here with their knowledge or experience. I started using tretinoin - prescription retin a at the start of march. Within the first week I developed a Papule of sorts that came up just under my collarbone near my shoulder right next to a liver spot I've had for a few years. 

 

I have an an appointment this week to see a GP that specialises in Dem who will refer me on if need be (im in the U.K. But grew up in Australia). The spot has been there for 8 weeks now as it appeared with no change. It is pink feels scaly especially after shower and about 5 mm. It literally appeared overnight and I noticed it straight away as I am vigilant with my skin. I waited the 4 weeks, its hasn't gone so made an appointment which brings me to this week(long waits uk). Being next to a liver spot I guess that makes it a sun damaged area of skin, as only other place I have liver spots are my legs. 

 

My initial thought is it is an actinic keratosis which the retain a has unmasked but now I am seriously freaking out that it instead an amelonitic melanoma and I've let it go for 8 weeks since it surfaced. I can't find much information on amelonitc melanoma online, it basically says there's no symptoms and it could just be that slight raised red splotch as that is how they present. 

Just to clarify there's no nodule it's a slightly raised papule, not itchy, not bleeding just causing me to cry every Time I look at my young children :(.

 

anyone have any insight or experience? 

 

Thankyou for your time

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Hi! I’ve introduced myself a long term ago, but here I am again! Originally diagnosed stage 3C in 2013. Had a recurrence in 2015. Just had a biopsy this week and the results are confusing even my oncologist. A biopsy was done of a lymph node that lit up on my last PET scan. The tissue showed no melanoma, but it DID show plasma cells, which he said do NOT belong in my lymph nodes. Does anyone have any information about this? I’ve never even heard of plasma cells. To give you some more info, my recurrence was never 100% determined to be melanoma. All they could say was that I had malignant spindle cells that made up the tumor.

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lwhaley94's picture
Replies 4
Last reply 5/14/2018 - 10:01pm

Hi, first time poster here.  I was diagnosed with melanoma on my scalp in September.  Results of lymph nodes were clear, no evidence of spreading.  Stage 1b.  Great news!

I have lumps under the skin on my arms for a long time and I worry that they are melanoma recurring.  I have received lots of information about what kind of moles to look for, but not much on what to "feel" for.  Any advice?  Is it my primary care doctor that I should be asking about this?  My dermatologist just looks at the surface, she doesn't feel anything.

I know I have had good news and I am very thankful, but I am cognizant of the possibility of spreading inside and wondering if these lumps could be something.

Lori Whaley

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Raco's picture
Replies 2
Last reply 5/17/2018 - 9:16am
Replies by: Raco, Bubbles

Hi, just got my BRAF results, I logged into my care plus to see lab results and it said the following.

BRAF gene mutation results::  Mutation Not Detected

Lab Comments:
SV18-841 A1 Microdissection Sentinel Lymph Node, left deep axilla Previous Diagnosis: Metastatic Melanoma

So I see my Oncologist next Thursday May 17, 2018 for my 4th opdivo treatment.                                        Will this BRAF result change anything for treatment??

Thanks to all for helping me understand.

Robbie

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/13/2018 - 11:39am
Replies by: cancersnewnormal, Anonymous, MrG

Hey all, 

I have found it tough to find information online concerning this.

In Feburary I had a vulva biopsy come back with the results below:

​Severely Atypical Melanocytic Profileration. 
​Comment: This proliferation extends to the biopsy margin. A more aggressive lesion adjacent to the biopsy cannot be excluded. Complete excision is recommended. 

 

I was sent to a gynecologic oncologist. At my appointment I was schedued for surgery for an excision. One on the biopsy site and another area that was not biopsied a little further south where I have a cluster of 3 freckles. 

 

This just all seems like so much..Everything I read online makes this sound like you do not need an excision for aypical moles.

 

If you all could give me some advice that would much appreciatied! 

 

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BillB's picture
Replies 9
Last reply 5/12/2018 - 6:46am

Completed Keytruda infusion #14 today along with brain MRI, CT scans of the neck and body. Scan results were still clear. Scanxiety is reduced for another 3 months. I’m sure my wife will be happy about that as I understandably  get a little ornery at the end of the 3 month scan cycle. 

Tex raised the question from his post yesterday regarding how long do you go before stopping. Wish I could answer that question myself. This subject has been on my mind since January and reading some of the recent posts regarding progression just muddies the waters and my thought process. It was a subject of discussion I brought up with my oncologist today and hope the discussion helps others and stirs some additional discussion since we, and we alone have to make the final decision when to stop.

Today was my third set of clean scans (October 2017, January and May 2018 ) since I moved to stage IV in August 2017. My oncologist believes based on my initial complete response and her other patients records with Keytruda and stopping infusions that I can also stop. She is not pushing me to stop, but also doesn’t want me to develop any debilitating side effects from the treatment. So far I have just experienced some fatigue, joint pain in my hips hand, and shoulder. Nothing to deter me from pursuing my hobbies. But, she also doesn’t want it to get worse. There is some interesting reading regarding durable response on Keytruda after CR. It’s a follow up paper from clinical trial  Keynote 001. I’m  pretty sure I read the summaries on Celeste’s blog but I will try to give a link to the full paper. I have read it along with my sons and the data is positive. I also inquired about if I stopped the infusions in reference to Keynote 001 information, could I restart them if I progress. Her thought was she didn’t see why it wouldnt work again but did qualify that there is no 100% assurance with anything melanoma related. 

So after reading  the above referenced paper over and over, comparing my information against the information in the report,  I do feel that I could stop the infusions, but I just don’t have the confidence or the ........... to make the decision and stop yet. Working on that. I wish everyone else success, and the fortitude to make the right decisions.

http://ascopubs.org/doi/pdfdirect/10.1200/JCO.2017.75.6270

Bill

 

 

 

 

 

 

 

 

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VinceMart's picture
Replies 6
Last reply 5/11/2018 - 9:58pm

Has anyone tried MEK alone? I can't handle the Tafinlar and my onc mentioned possibly MEK alone.

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lamurphy1968's picture
Replies 6
Last reply 5/14/2018 - 1:15am
Replies by: lamurphy1968, Raco, dessie

Hello everyone, yesterday I had two moles removed. One is close to my ear and resembles a squamous cell carcinoma the second one looks mean and angry. It's located on my abdomen. When the dermatologist looked at it he said it was definitely cause for concern and needed to come off. I now wait 2 weeks to get the pathology report back. It's going to be a long 2 weeks. I asked him if he thought the mean and angry mole was a bad one and his response was that sometimes he's wrong so he doesn't want to say one way or another. He wants to wait for the pathology report. However, he feels that it's something that is scary looking enough to get it off and feels as though we have caught it early. So nervous!

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pplexed's picture
Replies 7
Last reply 5/12/2018 - 12:11am

Had a mole removed from my great toe.  My derma did not seem too concerned.  However, I am concerned about the finding of Melan-A and Mart I.

 

Path report:

1 fragment of tan tissue received measuring 0.8 x 0.6 cm
Compound nevus, dysplastic type, with moderate dysplasia. 
Comments:  A conservative re-excision to ensure complete removal is advised
Extending close to the base of the specimen, immunohistochemical staining reveal staining with Melan-A and Mart I that confirms the diagnosis
The pathologic process is that of single and nested melanocytic proliferation along the dermal junction and in the dermis.  Moderate cytological atypia of melanocytes is noted. Bridging and fusing of adjacent rate is noted.  Superficial fibrosis of the papillary dermis is also seen.

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maddiecmac's picture
Replies 1
Last reply 5/11/2018 - 3:27pm
Replies by: Janner

Hey y'all, I'm Maddie.

Back in April I had a shave biopsy done on a mole on my scalp and it came back as Melanoma.

In the path report, it stated depth of 0.5mm and no ulceration. The margins were poorly defined. It failed to report the Mitotic rate. My surgeon requested the mitotic rate from the pathologist.

Without the mitotic rate, the current plan of action is to excise more of the spot with 1cm margins (next week). He said that we wouldn't look into lymph nodes unless the mitotic rate came back as abnormal or if there were abnormal findings during the excision.

I was wondering if anyone else has had issues with their mitotic rate not being reported?

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guynamedbilly's picture
Replies 1
Last reply 5/10/2018 - 5:30pm
Replies by: Julie in SoCal

I said I'd post again after I got the recommendation from the tumor board. So, here's my brief treatment history. I originally had a thick tumor on the back of my scalp. It was removed in July 2017. I've been on Nivo ever since, every two weeks. I had a recurrence on the back of my scalp, near the original site, that started in December 2017, but it was so minor and did not show up on scans, so we thought it could have been a bad pimple. It disappeared and I felt it again in mid February. The first punch biopsy was negative, but the bump remained, so nearly four weeks later a second punch biopsy, twice as deep as the first was positive. So I had a second surgery in early April. The tumor was a very slow grower and didn't show any uptake on the PET scan. 1.2cm diameter, fully resectable, nothing in the margins, no sign of it anywhere else.

The tumor board reviewed my case both times, and they've recommended continuing with my regular Nivo treatment schedule, ending in August.

I'm still feeling pretty positive about my chances at this point.

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mickpatti's picture
Replies 2
Last reply 5/11/2018 - 7:44am
Replies by: ed williams, Bubbles

My brother has been diagnosed with Stage IV melanoma.  It is in his brain, lungs, liver, adrenal glands and spleen.  He has not had a PET scan.  I have been readung about the BRAF gene mutation.  Have asked my brother's doctor if he was tested for it.  Doctor said tumor testing was backed up and they haven't gotten to his yet.  Doc said besides that - whether he is BRAF positive or not, he would still administer Opdivo.  He said Opdivo is the best option out there for melanoma.  My brother has 6 brain mets. The biggest was removed because it caused him to lose the use of his right arm, balance problems and a seizure.  Is it common to do whole brain radiation? They have ordered 10 radiation treatnebts so far.  Reading the side effects have really freaked me out.  Does all this sound right ?  Do we need to go somewhere else?

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SBeattie's picture
Replies 6
Last reply 5/11/2018 - 11:27am

Greetings...I haven't posted since late 2013 when diagnsed with recurrent lung mets (recurrent after a VATS procedue in 9.2013). I entered aipi/nivo clinical trial; found out after the fact I'd been double-blinded to the ipi//nivo arm and completed 2 yrs of every other week infusions. However by the end of the first year (2014) I was NED ( small nodules bilt in lungs). I've continued with every 3 month CT scans and have remained NED. Next CT scans are scheduled for this coming Monday. Last week saw my regular oncologist and my LDH was elevated, a tad over the upper limit but during the past 4 yrs it has not even been near the upper limit, rather it has stayed in the mid-range between the high and low end (i looked back to the last 12 values at both my oncologist's and melanoma specialit's offices) it is now about 35-30 units higher then its been over the past 12 months and previuos to that, all normal ... the only times its been eleveated was in correlation with metastasis...today I had a 2cm diameter round, not irregularly so, cutaneous lesion removed, sent for biopsy...in 2012 had a seborrheic keratosis, or so my derm, now since retired, said..removed in exact same place..returned couple of years ago, stable and and recently changed (larger, dark, bled if top cap removed, you know the drill!)...my oncologist who works closely with my melanoma specialist just ordered  PET scan for next Thursday...

My question is...IF I am experiencing a recurrence after having been a complete responder to NIVO/IPI...WHAT ARE MY TREATMENT OPTIONS? I'm a, freaking out....THANK YOU up front Bubbles etc. NO words can describe my grafefulllness for whatever beedback this note may generate

 

Sally

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