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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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Melodygrace's picture
Replies 4
Last reply 3/13/2019 - 1:23pm

Hi all,

I am coming here for a little encouragement and hopefully some answers to a few questions I have below. A few weeks ago, my dermatologist removed a suspicious mole on my leg. The pathology report came back as “moderately atypical and evolving into Melanoma In Situ.” I am going back this week to get a larger portion of skin removed. This did not come as a huge surprise to me, since my mother has also had melanoma removed (hers was stage 1B) and I’ve had a few moles removed that turned out to be dysplastic. I am now on high alert and dealing with a fair amount of anxiety, as I examine other moles on my body and wonder if they may be cancerous as well. I plan to get a few more suspicious moles removed for good measure.

My question to you all is- how long does melanoma stay “in situ” before it evolves into a more dangerous, invasive form? Weeks? Months? Years? I keep wondering what would have happened if the dermatologist hadn’t caught this when she did. I’ve had this mole my whole life and never noticed any changes, but she noticed a suspicious, tiny white spot when she examined it under the dermascope. 

And my second question- is Melanoma In Situ technically considered cancer? I am a little confused by this diagnosis. 

The dermatologist recommends I now get skin checks every 3 months. I’m trying to stay sun safe and watch my moles, but I always start feeling very scared when I examine my moles. I am covered in freckles and have many moles that look irregular for one reason or another. I’m afraid something is going to get missed.

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I admit, I'm scared. Four months ago I was a healthy 47 year old that had a lesion on the back of my scalp removed, and then 5 positive lymph nodes yanked in a dual neck resection. 

Two Opdivo treatments later, and I'm full of cancer. They zapped 18 mets in my brain with the cyber knife, then general radiation to a spot on my T3. An MRI last weeks shows "lesions in every vertebrae". I have mets on my adrenal, lungs, innumerable on liver and spleen, multiple in the pelvis, in my abdomin, ribs . . 

It hurts to move. It hurts to breathe. 

I started Braf/Mek on Saturday. It makes my eyesight blurry for about 8 hours then clears up, I can live with that.

I don't understand how I am at this point, this fast. 

Is there anything I should be doing? 

Thank you all . . I hate that we are all in this together. And I am thankful I have you all. 

Any advise would be more than welcome. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/11/2019 - 4:58pm
Replies by: Jamie1960

Trying to relax about partners bumps on scalp. Planning an appointment but wondering what it could be. There's one pink bump that's bigger than the other, doesn't itch but has dandruff all over it. It's just pink and raised, no fluid or blood and hair comes out of it. Size of a pencil eraser head. Then maybe an inch away there another same color bump but half the size. And next to that the scalp skin has a red blemish. All of the area carrying dandruff but don't itch. Anyone have multiple bumps around the scalp? Any clue what it could be if there were to be some guessing. We will be going to a dermatologist, just not sure how long it'll take. If there's a way to add pictures let me know

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smelissasuey's picture
Replies 2
Last reply 3/11/2019 - 3:03pm
Replies by: smelissasuey, Anonymous

I was just diagnosed this week with Melanoma of the Tragus. Biopsy was 7mmX5mmX1mm. The biopsy report says melanoma in Situ extends to the lateral margin and also gives a Breslow Depth of 0.35. I am scheduled Monday for a surgical consultation. My regular derm has not explained anything to me. I have been searching the Internet and have found that melanoma in Situ does not have a Breslow Depth so why do I have a depth if it is in Situ? Margins were not clear so is this just preliminary, no staging or anything on initial biopsy. With this being on my ear/face I am very concerned about how they will even clear the margins. Any insight would be appreciated, I am driving myself nuts looking at all this stuff and Monday cannot come soon enough!

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Lucygoose's picture
Replies 5
Last reply 3/9/2019 - 9:04pm
Replies by: lkb, Edwin, Lucygoose, Linny, BrianP

I’ve decided on doing Dr. Lowe’s clinical trial at Emory Winship. 

I’ll have pretreatment testing performed next week and my first infusion of ipi/anti-SEMA4D (pepinemab, Vaccinex) the week after as neoadjuvant.   There will be another neoadjuvant infusion 3 weeks after the first.  Three weeks after infusion #2 I’ll have neck dissection to remove the enlarged lymph node and the remaining lymph nodes in the rt cervical basin.  After I heal from surgery i will receive nivo as adjuvant therapy for a year.

 
I had a second opinion at MD Anderson.  Dr. Tawbi’s nivo/anti-LAG 3 trial looks very promising and I was very tempted to go there.   As with all of these studies it is a handful of patients thus far and I’m not sure the statistical power is there to say it’s better than the neoadjuvant therapy at Emory.  I live in Atlanta and for my first line treatment I want to be home. 

I’ll keep you posted on my progress.

Lucy
Stage 3B, enlarged rt cervical lymph node, primary unknown.

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obtu.bt's picture
Replies 7
Last reply 3/13/2019 - 11:27am

Does any one has info about GCMAF? Would you please share.
Thanks

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bandj5's picture
Replies 8
Last reply 3/13/2019 - 7:48am

Hello! Can someone help me make sense of where I currently stand? I just received my surgical pathology report. I am confused on the findings and how it relates to my original pathology report. What staging is correct? Am I free and clear? What does “Invasive Type: Invasive. Microscopic focus of residual tumor is present in block B4” mean? Any information you can provide would be much appreciated. Thank you!

Original Dermatopathology Report:

Skin, Left Lateral Lower Leg, Shave Biopsy

Malignant melanoma, superficial spreading.

Breslow measurement: 1.2 millimeters, transected at the base.

Clark’s level: Al least IV, transected at the base.

Surface ulceration: Absent.

Precursor lesion: Not identified.

Regression: Not identified.

Lymphocytic response: Non-brisk.

Mitotic index: 7 per square millimeter.

Lymphovascular channel involvement: Not identified.

Neurotropism: Not identified.

Satellite lesions: Not identified.

Margins: Tumor extends to the deep and lateral margins.

Tumor staging: At least pT2aNX

Surgical Pathology Report

“Part B is labeled "left lateral leg melanoma short 12 o'clock proximal and long stitch at 3 o'clock posterior". Submitted is an ellipsoid segment of light tan and dark blue skin and yellow-tan thick subcutaneous
tissue measuring 5.5 cm 12-6 o'clock and 3 cm 3-9 o'clock. It is uniformly thick at 1.2 cm. Centrally located is a shallow ulcer type lesion measuring 0.7 cm in diameter, the 12 o'clock margin measures 2 cm, 3 o'clock margin 0.7 cm, 6 o'clock 2 cm and 9 o'clock 1 cm away from the ulcerated area. The surgical margins are painted as follows: 12 o'clock blue, 3 o'clock yellow, 6 o'clock green, 9 o'clock red and deep is black. Upon sectioning the deep margin measures 1 cm from the ulcer. It is sampled and representative sections are submitted as follows: the lesion in its entirety including the 3 o' clock, deep and 9 o'clock margins in cassettes B1-B4; cassette B5 is the perpendicular section of the 12 o'clock tip; and B6 is the perpendicular section of the 6 o'clock tip.”

CAP SYNOPTIC REPORT MELANOMA
Site: Left lateral leg

Procedure: Wide local excision and excision of three sentinel lymph nodes

Laterality: Left

Invasive Type: Invasive. Microscopic focus of residual tumor is present in block B4

Maximum Tumor Thickness (Breslow): 0.15 mm, please see prior shave biopsy report also which may have shown greater depth of invasion

Anatomic Level: II to III, please see prior shave biopsy report also which may have shown greater depth of invasion

Ulceration: Not identified

Mitotic Rate: Not identified, please see prior shave biopsy report also

Lymph-Vascular Invasion: Not identified

Perineural Invasion: Not identified

Tumor Growth Phase: Vertical

Tumor Regression: Not identified

Tumor Infiltrating Lymphocytes: Not identified

Satellite Nodules: Not identified

Surgical Margins:

Skin Peripheral Margin: Free of tumor, 0.9 cm from 3 o' clock/ posterior margin
Deep Margin: Free of tumor, 1.0 cm away

PATHOLOGIC STAGING:
pT1a, please see prior shave biopsy report also which may have shown greater depth of invasion

pN0 (sn): Number of Lymph Nodes Examined: 3. Number of Lymph Nodes Positive: 0

HMB 45 and Melan A IHC stains are examined on lymph node blocks and are negative for metastasis. All IHC controls are satisfactory.

Ancillary Studies: Please order any necessary ancillary tests on prior shave biopsy specimen as the tumor volume in the current specimen is too scant for molecular tests.

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MLD1973's picture
Replies 3
Last reply 3/15/2019 - 5:20pm
Replies by: MLD1973, Summer S., lkb

Hello,

As you know I have just been diagnosed and have been researching on how to check for the ugly duckling.  My skin nurse advised me she would show me on my first check up after my WLE in May,

Well, I am trying to educate my self and how to spot any changes, my body has lots of freckles and a handful of moles.. I could play dot to dot!!

What is the best way to track your moles and freckles and measure any changes?  I wanted to do mole mapping, but there is no facility by me in the UK.

You advice would be so valuable to me, as I really don’t know where to start, it sounds simple but feel it’s not that simple!

love and hugs to you all

 

Mandy x

MLD

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Sarahprince22's picture
Replies 4
Last reply 3/11/2019 - 7:29pm

Just got my pathology results yesterday. Confirmed melanoma and this is my 3rd time, three different spots. Doc thinks it’s “in situ” as the other two have been but of course we will know for sure after he removes it. QUESTION: should I ask for a lymph node biopsy just to be on the safe side, since these melanomas keep popping up on my body? I’ve been feeling unwell lately and I’m concerned that maybe my doctors have missed something. I’ve never had any nodes checked before. 

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worriedwendi's picture
Replies 1
Last reply 3/10/2019 - 10:06am
Replies by: Jamie1960

Hello all. Just a brief backstory, I had a mole on the back of my leg that developed last spring after a sunburn. I got it removed and last week they called and told me it was severely atypical with a high potential to turn into melanoma. I am getting more of the area removed in a few weeks. I also got 2 more moles removed a few days ago and am (anxiously) awaiting the results of those.

Here is my question: I've had a mole on my stomach for as long as I can remember. Today I noticed it seems to have grown in size and the borders are looking irregular, and it is a brownish red color. I am 28 weeks pregnant and sure that could possibly account for some of the changes. However, I've also read that pregnancy could possibly speed up the effects of melanoma. I guess I'm just wanting to know if I am worrying too much about this? I've been reading so much about melanoma and am very scared. Would it be logical to get this mole removed too, even though I've gotten 3 other moles removed in the past few weeks? I want to be cautious, but not ridiculous about it. I would ask my dermatologist her opinion on it but she didn't seem concerned about any of the moles, even the one that came back highly atypical.

I'm also concerned about this because I got some bloodwork done by my obgyn for my glucose tolerance test, and my white blood cells and neutrophils came back high (13.4 and 10.6). I've read that can happen in pregnancy, but can also happen with cancer.

Thank you all for your time and any input would be appreciated!

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Becky_wilko's picture
Replies 2
Last reply 3/20/2019 - 4:00pm
Replies by: DZnDef, swalters1038

Hello, my names Becky. I’m 34 years old, yesterday after an anxious 3 months finally got a diagnosis of Superficial Spreading melanoma Stage 2A. 

In December (2 months after giving birth to my son) I found a new black raised pimple. It resembled a blood blister. I saw my dermatologist immediately who with no concern said it was a traumatised angioma. Feeling reassured I went away enjoyed Christmas, then into January kept taking photos of the mole on my lower back. At the beginning of Feb I rang my derms secretary, she liaised with Derm who wouldn’t see me until beginning of March, I said it’s doubled in size. But no concern. In the end, a day or so later I rang again, begging to be seen. She said send me a photo and I’ll show a different dermatologist in the morning. 

He said the same, it must have just been traumatised more so, he said he was almost tempted to stick a needle in to show me, but got my anxiety will arrange biopsy. 3 days later, another Derm removed mole. He said with 30 yrs experience him and another dr said, it’s a haemangioma, there will be nothing to worry about. 

I felt a bit silly but relieved. Until the secretary rang me Tuesday saying could I come in Thursday first thing. 

i begged for the result over the phone, but insisted it was procedure. 

 

So as id felt in my gut for so long, I finally have my diagnosis. They’re insisting the got it all with clear margins. 

Breslow thickness 1.8mm, no ulceration, mitonic rate 4,

im going in a couple weeks for WLE and SNB. 

As I’m sure most are, I’m petrified. Concerned about the high mitonic rate. 

Does anyone know more about the mitonic rate, do you this is highly likely it’s spread to my lymph nodes. 

lymph nodes felt normal. They tell me I’m lucky. All clear margins. 

I’m just so worried, my husband is undergoing a craniotomy for a grade 2 tumour recurrence. Next Tuesday. 

I don’t think I can take much more

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abhi01021987@gmail.com's picture
Replies 4
Last reply 3/20/2019 - 1:53am

Plz help so my mom can handle the severe pain.

Start from leg lymonodes now metastatis in lungs and brain.
Brain surgery done but again spot come .one left side parr paralysed .
Severe pain

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Anonymous's picture
Replies 3
Last reply 3/10/2019 - 10:10am
Replies by: Jamie1960, SABKLYN

Hello,

So I had this mole on my scalp forever now, and it always had a white center in it. is quite big and raised, but I do think its getting even whiter in the center, aka the whitness has increased.. the whitness does have brown mole borders, as if the white spot would be in the middle normal mole

anyways for some reason i cant find any examples of a mole like that being normal... or being cancerous...... which is very concerning

Was wondering if anyone had same experience, or know if perhaps mole like that can be normal?

Just grasping for hope here. I am currently a student researching bowel cancers biomarkers and was supposed to go onto research of leukemia soon. would be very ironic if my mole comes back as cancerous....

thanks for reading

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Edwin's picture
Replies 4
Last reply 3/9/2019 - 9:06pm
Replies by: lkb, Bubbles, MarkR, GeoTony

In April 2018 I received radiation to a melanoma tumor under my left jaw.  I have received Opdivo immunotherapy since April 2016 ( at first with Yervoy ).  I had a PET scan yesterday, then I met with my radiation oncologist Dr Blanchard.  He showed me images of that tumor from my April 2018, September 2018, December 2018 and yesterday’s PET scans.  That location showed brighter in my September PET scan.  It was about as bright in my December PET scan as in the April one.  It could have been brighter in September due to healing from radiation.   Yesterday’s PET scan showed that location significantly less bright.  All 4 PET scans showed no other active area.  Dr Blanchard is no longer worried about me.  He thinks this met will not grow.  He leaves followup to my primary oncologist Dr Gaba.

In September 2015 I received radiation to melanoma in a rib.   I began receiving immunotherapy in November 2015.   This radiation and immunotherapy failed.  I had melanoma in many bones in March 2016.

I my case radiation followed by immunotherapy failed, but radiation with immunotherapy seems to have succeeded.

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