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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MovingOn's picture
Replies 4
Last reply 12/21/2017 - 9:03am

I’m getting my first scan since starting Keytruda. It will be a CT scan. However, all my previous major scans have been MRIs. This one started out as an order for an MRI which my insurance approved. Then the Radiology department consulted with my Oncologist and the order was changed to a CT. My insurance questioned this change but my Oncologist discussed it with them and it is now approved.

My only hesitation with a CT scan is that in May I had a CT scan because of symptoms of hypophysitis (I was on Ipilimumab at the time). They came back and said the CT showed everything in my brain was fine. I then had an MRI three days later and it said my pituitary was more than double the size it had been 3 months earlier (hypophysitis). So I lost all confidence in CT scans at that time. Hopefully my loss of confidence was misplaced and there is nothing about a CT scan which would make it inferior at identifying melanoma progression compared to an MRI. I guess I’m just venting to get some energy out while I await my results.

2018 is a new year!

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John Bruno 2613's picture
Replies 1
Last reply 12/18/2017 - 10:03pm
Replies by: ed williams

My brother had two melanomas in less than a year. He is getting checked every two months at Mayo Clinic and he had several atypical moles (more than 10) It says that people who have more than 10 are 12 times the risk of developing melanoma compared with the general population. Recently he had a benign mole taken off, however, it extends to the deep margins. Since it is in the deep margins and we can no longer see the mole or monitor changes should we re-excise it? I think it might be a bad choice to not re-excise it since benign moles can turn to melanomas. Leaving a cell in the deep margins could not be good because by the time you spot something wrong it could be too late. That is the way I am asking someone with experience with what my brother is going through to please reply. Thank You

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WendyI37's picture
Replies 9
Last reply 12/22/2017 - 5:44pm

I was diagnosed with Stage 1a Melanoma on December 6th, 2013. It was .30mm, no ulceration, 0 mitosis, and no other negative prognostic factors. My follow up treatment was WLE, skin checks every 3 months for two years, then every 6 months since. Now I'm confused. I went for my normal skin check last week, everything looked good, but my dermatologist ordered for a chest X-ray and blood work to check my Ldh1. Being a very anxious person anyway this freaked me out. I mean out of these 4 years, I was never told I needed any if this stuff and now all of a sudden it needs to be done? If it was something that was suppose to be done why not when I was first diagnosed? Now I'm waiting for the results freaking out, thinking the worst. Has anyone else had to do this for a 1a and did they wait 4 years out before requesting such tests? My dermatologist was diagnosed with breast cancer, she had surgery, and chemotherapy. She is cancer free now, but is she just being extra safe since her diagnosis? Any and all answers will help. Thanks in advance.

Wendy Ingram

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lkb's picture
Replies 8
Last reply 12/21/2017 - 9:34am

Hello excellent discussion group!

Primary scalp lesion excised in October; SLNB revealed two nodes involved. Stage IIIA. Willl have PET/CT in 3 mos. Getting good care at UC San Francisco, but given the seriousness of the disease, want a second opinion. Prefer California, but could travel beyond. Does anyone have Second Opinion advice/experiences to share? UCLA? Block Center in Chicago? Some have phone/email programs? How to choose? I'm want to set up now for immediately post-Scan results. Good plan?

Thank you!

lk

Primary scalp lesion excised in October 2017; SLNB removed and revealed two positive nodes. Stage IIIA.

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Peggy Nielsen's picture
Replies 6
Last reply 12/22/2017 - 5:21am

A spot on my face came back as melanoma.  It’s next to my nose.  My dermatologist recommended I have it removed by a surgical oncologist (in Illinois).  Problem is you can’t get in to see someone until January and I’m scheduled to go to FL on 1/4/18.  I think I might want to have this taken care of in Florida because they want me to have a sentinel lymph biopsy done and I’m not sure what kind of follow up might be necessary.  Also, I’ve had other melanomas (and basals) but nothing that required further treatment.  To be honest, I am freaking out.  Any doc referrals or other advice?  Thank you in advance.

Peggy Nielsen

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/17/2017 - 9:30pm

I had a biopsy performed for melanonychia in my thumb nail. This is the second biopsy that was conducted, during the first my doctor did not remove my nail and failed to biopsy the correct spot. The second time she removed the half of my nail with the streak and biopsied underneath. She let me know Monday that the pathology showed a focal point of pigment. She also stated that the spot was very subtle but she believed that she removed it all. I received the pathology report today, I guess I’m confused by the comments regarding the specimen. Can someone please help? Based on my doctor’s observation do I need to continue to follow this, is this result inconclusive? 

 

FINAL DIAGNOSIS:
1. Nail and nail matrix, matricectomy:
-- Nail matrix with focal pigment. (See Diagnosis Comment.)
-- No fungal organisms are identified on PAS-stained section.
Control worked appropriately.
DIAGNOSIS COMMENT:
No morphologic evidence of a melanocytic neoplasm is observed
however, interpretation is limited by the thin sample size. If this
represents a small portion of a larger pigmented lesion, we would
recommend close clinical follow-up and consideration for a larger
biopsy if clinically indicated.

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/15/2017 - 7:33pm
Replies by: Janner

Hi

i was recently diagnosed with a melanoma Insitu and the report said I need a WLE with 10mm clearance. 

The surgery has taken place and the histopathology report states there was no malignancy seen on surgical sample and there was a 3mm margin. 

this 3mm margin is really concerning me. I called th doctor and he said he’d taken more out but the skin shrinks a before it gets to the lab. I’ve never heard this before. Does anyone know about this. I’m thinking for peace of mind I should have more cut out but not sure how to go about this. 

Thanks. 

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Jubes's picture
Replies 4
Last reply 12/16/2017 - 12:18pm
Replies by: Prd10, jennunicorn, iskitwo, Anonymous

Just wondering that if you are having pet scans every three months if you still have to do the regular Pap smears and mammograms and other screening for other common cancers? I keep getting reminders but it’s hard to get up the energy for more tests thanks

Anne-Louise 

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In the Last Year, my brother had one Melanoma, and a severely atypical mole and melanoma in situ could not be ruled out. Along with that, I have had multiple moles biopsied and the last one is as follows:

INTERPRETATION FINAL DIAGNOSIS A. Right posterior shoulder: Irritated compound nevus, congenital type, focally extending to the deep edge of the specimen.

Being that there is no mole left to monitor and that the deep edge of the specimen is still involved, my questions is this: Do I need to have this re-excised to get clear margins? I know that it is a benign mole.  But there is not a mole there left to monitor, and it is in the deep margin therefore, I am unclear of what to do? Can a Mole that is benign turn into Melanoma or an Atypical mole? I am just very unclear of what I should do can someone please advise me. 

 

What would you do in this situation?

 

Thanks so much!

 

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Scooby123's picture
Replies 7
Last reply 12/18/2017 - 12:29am

Hi guys,

Hope you all as well has can be, just a update 6 rounds keydruda had first scan and tumours shrunk by half. Apart from aching joints trips to loo coping well. Head clear thank goodness.

 

Been a rough time lately with my mother in law just had a stroke, had a call from a gentleman a lovely lady I have known since I was in my first job ever she is 93 had a stroke and in a care home and been told she will not be going home. Her daughter has breast cancer and been told nothing more can do. 

So I have felt down quite a bit with all what's been going on and not enough days in week to do everything especially with working too.

i wish all of you a merry Xmas and hoping all to have a good new year.

Scooby ❤️

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Sarah 2345's picture
Replies 6
Last reply 12/18/2017 - 12:37am

Hi 

I found out on Tuesday that I have a melanoma insitu and it was cut out that afternoon. The doctor told me I was very lucky it was caught so early and it has 100% success rate. While this is the best case scenario I can’t stop crying and feeling so scared. 

I’m from the UK, red haur, fair, freckles and now live in oz (3 years). The past few years I’ve been very careful in the sun but growing up for years I sunbathed, use sun beds, have burnt and blistered so many times I’ve lost count  

I turned 40 last week -actually had the biopsies on my birthday! I have 3 very young children (1,3 and 5) and I’m so scared of something happening to me and me leaving them in this world. 

Whilst its great the melanoma was still insitu im so scared given my colouring and huge sun exposure that sone thing more serious is round the corner. You hear lots of stories of things more serious coming back and it’s just scaring me so much  I don’t want my kids growing up without a mum - I can’t cope with the thought and I’m a mess. 

I’m crying constantly and just can’t stop thinking about my kids. I need to go for 3/12 check ups but I’m worried that’s not enough. 

My my other question is that this melanoma was found by luck at a skin clinic - not a dermatologist. And the same guy cut it out. He’s a specialist GP. The report said clear margins but how do I know if clear enough. Should I ask to get more cut off? I’m trying to get in to a dermatologist but that won’t be for 2 months as so booked up here. 

Thank you for listening and any positive words so welcomed  

 

 

 

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Jewel's picture
Replies 2
Last reply 12/14/2017 - 9:46am
Replies by: Bubbles, Toby0987

Good morning,

Hard to believe I've been off this site for awhile to help my husband now deal with his bladder cancer diagnoses. He will be having his 6th treatment of bcg tomorrow. The good news is my husband finished his Yervoy treatment in Feb 2015 and so far has kept him NED. Upcoming scans in Jan. I guess my question is have any of you felt with a 2nd cancer as well? This one has been very rough on us both mentally & physically. Hoping you all are doing well and thank you for this wonderful place to vent and be true to fears and questions.

Jewel

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