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.

Expand/ Collapse Topic
 
Replies By
View Topic
amybgg's picture
Replies 3
Last reply 1/9/2017 - 10:37am
Replies by: Anonymous, iskitwo, mjanssentx

Hello, I am a year and a half out from a melanoma diagnosis. I was fortuntate and caught it early. At the time of my diagnosis I lived in Kansas City. I loved my dermatologist and oncologist and even my plastic surgeon (I needed a skin graft). I have recently moved to the Dallas area and am a loss to find a dermatologist I like. I was referred to a doctor here by my dermatologist in KC. He's nice enough and seems competent, but seems more interested in chemical peels and botox. I don't even know where to begin in a city this big to find someone who is more focused on this side of things. I had an atypical mole removed this week. All I got was an email with lab results. I just feel like someone with my history needs a little bit more of a personal, compassionate touch. Also looking for someone who does skin imaging. I've been cleared by oncology, so just looking for an aggressive dermaotolgist.  Any advice is appreciated. TIA. 

Login or register to post replies.

MelissaMW's picture
Replies 12
Last reply 1/10/2017 - 12:45pm

Hey guys, 

I was wondering if anyone can give me some feedback on a good Melanoma specialist in Ohio. So far I'm looking at Cincinnati Christ Hospital (Dr. Leming), Dr. Karim in Cincinnati as well as at the Cleveland Clinic Dr. Gastman. Any experience with any any of them? I was diagnosed with stage 1a Melanoma 2 weeks ago.

 

Thanks in advance and have a great weekend! 

 

Melissa 

Login or register to post replies.

UBContributor's picture
Replies 11
Last reply 1/7/2017 - 11:03pm
Replies by: Nemesis, SABKLYN, Ed Williams, Janner, Anonymous, UBContributor

Hello everyone, 

I always had a mole above my anglebone of my leg. It turned whitish, and I do not know how long ago, fast or slow. Dx-ed and removed Nov 2016, two weeks later - 0,5 mm margin cut. Path.report is very short: "m.melanoma, margins are free of  malignancy".  Dr.Porres of Rockville, MD. additionally said: 1.5 mm cancer spot, mole is 4 x 6 mm, no ulceration, "now live ur life, nothing else is needed", no even regular  visits. Report does not say anything anout mitotic rate or stage.

I moved out early Dec 2016 to a new area. Now my new Dr wants more cut done, another 0,5 mm. I requested PET scanning, he agreed. He says I COULD make SLNBiopcy, it is optional and my decision to have it or not. In such case SLNBiopcy shall be made around inner thigh\groin (? not sure)

So pls pls pls share your thoughts if I need such SLNB and experience with it. 

Thank you for listening. 

George, 26 yo

 

 

 

Login or register to post replies.

atsea's picture
Replies 2
Last reply 1/7/2017 - 8:49am
Replies by: atsea, Janner

Hello everyone, I had a punch biopsy done for a spot on my face. My dermatologist said the results came back "precancerous" and schedlued an excisional biopsy for next week. So, my dermatopathology lab report says Final Diangosis:  "Severely atypical intraepidermal melanocytic proliferation", and "Although the findings are not sufficient to render a definitive diagnosis of melanoma in situ, the lesion is significantly atypical"; and "sections show a proliferation of atypical melanocytes at the dermoepidermal junction with areas of confluence". 

 

So what my doctor said was that I don't have melanoma, but it's like the "step before melanoma".  What is worrying me is that I have had swollen lymph nodes in my neck for several weeks now.  I did not think to mention this to him but I do have an appointment with my regular physician to ask about that.  Is it possible that it really is melanoma that has spread but the punch biopsy didn't show it???  Thank you!

Login or register to post replies.

Hi there. ive noticed in the last two days a strange spot/blemish/thing on my shoulder/neck area. I have lots of scars on my back so know it pretty well, so this is def new and very sensitive to the touch. I also know what pimples are and know it would have either gone away or formed by now.
So like the paranoid person i am, i looked it up. and came to the amelanotic melanoma.

the mark looks like it has some scar tissue around it, and when i was born and to this day i have a lack of pigment on parts of my body. so i thought having this condition and having scars on my back, mixed with the Australian sun in summer would i be more susceptible ?

 

here is a crappy phone image of the mark on my shoulder.

http://imgur.com/a/6BS6G

http://imgur.com/35N9U4C

 

Thanks in advance for any thoughts.

Login or register to post replies.

Jubes's picture
Replies 4
Last reply 1/7/2017 - 9:22pm

Hi all

i have had a lovely vacation in New York. Grandchildren, concerts, the opera, Carnegie hall, amazing meals and even some good shopping... but every day I have thought of josh and hoping he is improving and finding the right combination. Has anyone heard anything?

For myself I have a pet scan next week to see if Cancer has stopped progressing after my surgery. Having stopped the infliximab, my spondylitis is getting worse again but I will talk to my rheumatologist about the drugs Niki suggested when I get back. Still planning on doing a full roster of work this year so fingers crossed 

Anne-Louise 

Login or register to post replies.

snow white's picture
Replies 15
Last reply 1/9/2017 - 12:17am

Hi All,

Everything has been humming along. with Dad, in fact he was told that he can drive short distances.  

Yesterday, he went for an MRI and then met with his neuro surgeon.  They seemed positive when they met with him.  My Mom called me this morning and said she needed to talk.  She had been reading Dads latest report and she was very scared.  This is what the report says:

FINDINGS: The previosly seen numerous lesions with intrinsic high signal intensity and some contrast enhancement predom inating in the high subcortical bihemispheric regions are again identified, as are several small "dot" peel foci in the left mid frontal convexity.

There is no obvious new disease, progression of size in the pre existing lesions, or other acute pathology.

CONCLUSION:

Stable short interval appearance of multiple metastatic foci describled on the December 2 study, and one month later today.  The presence of several tiny peel foci suggests the possibility of leptomeningeal disease, cervical, thoracolumbar follow up studies can be done as indicated clinically.

What now?   The Leptomeningeal disease scares the crap out of me.  Please tell me there is hope here.

Jen

 

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. On Opdivo. Receiving treatment @The Angeles Clinic

Login or register to post replies.

Aloha14's picture
Replies 3
Last reply 1/7/2017 - 1:00pm

Since mine were identified and then removed, do other remaining lymph nodes become sentinel nodes? Just wondering in case I had another Melanoma (I hope not) that would also drain to the same area, the groin. 

Login or register to post replies.

Shaneswife's picture
Replies 2
Last reply 1/8/2017 - 7:48am
Replies by: MaPerny, Ange

Is there anything a person can do to control night sweats? Since hubby started the dabrafenib and tramentinib he's having awful night sweats.

Janis

Login or register to post replies.

Nemesis's picture
Replies 10
Last reply 1/7/2017 - 3:35pm

I feel guilty about writing this, since there are so many people here struggling with more serious diagnosis than mine. But it's been less than a month since the entire melanoma story entered my life, so my anxiety levels are really high.

 

Short story: ugly looking mole, biopsy, 0.94 mm Breslow depth, no ulceration, but a mitosis of 1, had WSE last week with SNB, according to my doctor, the melanoma had spread further than the original biopsy caught (do not know how much deeper), SNB was benign. So the suggested treatment is dermatology visits every 6 months.

 

That is not helping my anxiety though. I was always obsessed with getting melanoma, always stayed out of the sun, hate tanning, watched my many moles carefully and so on. It was during pregnancy (I have a 6 month old boy) that I lost track of my moles (was also said it is normal for them to change because pregnancy hormones).

 

How do I deal with the fear of it returning? Now I have an "increased risk of breast cancer" fear to compound to that. I know early detection is the key, but I just feel like there are melanoma cells still left in my body. Should I go for an anual PET scan as well? What test would catch the smallest sign of melanoma?

 

I am sorry, I probably sound like a lunatic.

Login or register to post replies.

Anonymous's picture
Replies 5
Last reply 1/14/2017 - 1:47am
Replies by: mannines, Anonymous, Janner, debwray

Hello all

Thanks for ongoing advice on this pesky atypical mole.

Trail below but short story is displastic nevus reviewed by x2 derms who said mild / mild - moderate displaysia. The first report said clear margins.

I have been keeping an eye on the biopsy site and noticed a darkish spot next to (not within) the biopsy site. I thought it was just healing from the stitches but it is in fact pigment. This has grown quickly (since biopsy 2 December) and is probably 2mm which is as big as original mole but lighter in colour.

I have an apt Tues to reexcise as derm said this is unusual. Any thoughts/ advice here please?

Any questions I should ask at my apt. I know regrowth happens but in the space of 3 weeks?

Many thanks

***

Hi all - copy and paste from last post. Newest to oldest below. Im a little confused and more concerned than before

Many thabks.

Reply Report
Re: Help interpreting pathology report - atypical mole (Att... mannines - (12/25/2016 - 10:38pm)
Hi Janner/all - advice needed am more worried than before.

In my first post I mentioned that I was going to get a 2nd opinion from a derm as I found the initial pathology report for my dysplastic nevus to be a little vague.

Well that derm called me xmas eve (great timing) to say that the team of specialists on review felt that the mole was mild / moderate (I had spoken to the first pathologist myself who said it was mild).

My original path report apparently didnt mention any cellular atypia which they found on review.

He also said that they were going to run some new slides as 'sometimes when we look deeper we find some worrying things'. Added that if it was on his arm he would want it cut out.

I am now obviously a bit concerned as to why they would a) upgrade and level of atypia and b) think they needed to run further tests. Do you know what these would be? The clinic where I had the punch biopsy done said no further excision is required.

I tend to suffer from health anxiety so I realise I'm probably blowing this out of proportion but looking for any advice here.

Many thanks

Report
Re: Help interpreting pathology report - atypical mole (Att... Janner - (12/14/2016 - 9:11am)
There is nothing about this path report that screams worrisome to me. If I had clean margins (like this one does), I'd just move on. Not all pathologists classify atypical moles as mild, moderate or severe and that doesn't mean the report is lacking if it doesn't. (It makes it easier for us but we're not really the audience this pathologist is writing for). The description itself usually indicates more worrisome architecture or cellular atypia and this one specifically rules out typical melanoma features. (I am not a medical person or pathologist).

http://www.MelanomaResources.info

Reply Report
Re: Help interpreting pathology report - atypical mole (Att... mannines - (12/15/2016 - 8:11am)
Many thanks for taking the time to reply Janner - much appreciated
Report
Re: Help interpreting pathology report - atypical mole (Att... Janner - (12/14/2016 - 9:11am)
There is nothing about this path report that screams worrisome to me. If I had clean margins (like this one does), I'd just move on. Not all pathologists classify atypical moles as mild, moderate or severe and that doesn't mean the report is lacking if it doesn't. (It makes it easier for us but we're not really the audience this pathologist is writing for). The description itself usually indicates more worrisome architecture or cellular atypia and this one specifically rules out typical melanoma features. (I am not a medical person or pathologist).

http://www.MelanomaResources.info

Reply Report
Re: Help interpreting pathology report - atypical mole (Att... mannines - (12/15/2016 - 8:11am)
Many thanks for taking the time to reply Janner - much appreciated

*
Reply Report

Hello all

thank you in advance if you are able to help.

I had a mole biopsied and the pathology report didn't state whether it was mild, moderate or severely dysplastic. It was a punch biopsy of a 2mm mole with 1mm margins.

The clinic said all margins were clear and that no further excision is required, however, I'm seeking a second option (from this forum and another dr) as the report was vague. Any interpretation of the report would be much appreciated.

REPORT:
Skin with increased pigmentation of tthe basal cell layer and a junctional melanocytic proliferation composed of nested groups along the tips of elongated and variably fused rete ridges. There is also lamellar fibroplaysia, mild chronic inflammation, pigment incontinence and a few banal melanocytes in the upper dermis.. There is no confluence, mitototic figures or pagetoid scatter seen.

Conclusion: Compound melanocytic naevus, dysplastic

This is a fantastic forum and source of information and comfort which I have been reading over the past few weeks.

Any advice appreciated and I will update also with 2nd opinion from Dr when I get it. I know aypical moles are contentious in terms of their ability to turn into melanoma and also that there is no general consensus on treatment so I'm finding it all a bit 'grey'...

Best wishes to everyone here

Report
Re: Conflicting advice on dysplastic nevus - confused debwray - (12/27/2016 - 1:08pm)
Hi,

Dysplasic naevus by definition have some abnormal /unusual features. They can evolve - and MM can develop within a dysplasic naevus which happened in my case - but only in a small part of it.

HavIng said all that- you have asked for a second opinion .The reports seem to tally so far but are expressed slightly differently. I'm guessing that the second lab is doing the same as they did for me and are running some further stains that might possibly indicate melanoma cells. Given that the lesion has already been removed with clear margins - you are in a good place. In the rather unlikely case that the stains were positive then you would probably be advised to have further margins..but the first level of tests were OK ,so you just need to sit tight unless you are told further action is needed.

If it is so hard to identify- chances are all will be well as it has been caught early.

Wishingyou well

Deb

Reply Report
Re: Conflicting advice on dysplastic nevus - confused Janner - (12/27/2016 - 5:07pm)
You asked for a second opinion and you got it. If you asked for a third opinion, it would likely differ. Pathology is an art as much as it is a science and you are dependent on the person who reads and "interprets" what they see.

The 2nd lab interprets things differently - more cellular atypia. They are just going to do their own analysis. I would absolutely NOT WORRY about any of this. This isn't going to come back as melanoma. And it hardlly matters how much atypia exists in the grand scheme of things. It's removed. I've had 3 melanoma primaries and I don't even give a second thought to any dysplastic moles removed if they have clean margins. Don't let this get to you because it isn't worth the angst!

Login or register to post replies.

WallyE's picture
Replies 3
Last reply 1/7/2017 - 5:17am
Replies by: WallyE, debwray

Hi all, kudos to all you hard fighting worriers of this terrible disease.

I have just had an op to remove a met mel tumour lodged between my pancreas and colon. The op was successful and the tumour removed but then my colon developed a leak. This all involved a hospital stay of some 5 weeks due to infection having manifested itself.

While in hospital various scans had to be taken and one in particular worries me. When confronted the doctors merely told me not to worry as thay had more serious issues to deal with in view of the colon leak. I accepted the fact that this was priority.

The scan report reads as following:

There is sclerotic focus in the left iliac blade.

This can represent a bone island but a focal metastatic lesion is not excluded.

What does this indicate - a possible further met malenoma.

The doctors have ignored my request for an interpretation.

Has anybody out there had a similar result and what were the consequenses?

I really could not face a further cession in hospital after having had my stomach due to melanoma removed in November 2015 and now this melanoma in November 2016 as described above.

Any thoughts would be most appreciated.

Regards. Wally

One day at a time.

Login or register to post replies.

Nemesis's picture
Replies 4
Last reply 1/6/2017 - 8:57am
Replies by: Janner, Nemesis, MaPerny, Aloha14

My doctor told me they found more melanoma at my original bipsy site, but that they took it all out during the wide exicision. Should I be worried, is that a bad sign that it had spread deeper than the original given depth?

Login or register to post replies.

Spl25's picture
Replies 3
Last reply 1/6/2017 - 11:30pm
Replies by: Janner, Spl25

Hi all - I've been a PD-1 responder, but the 2 lymph nodes that radiologist keeps an eye on have remained mildly enlarged at 1.7x1 cm throughout treatment. Is this normal? Possible they are just gummed up at the moment? My mets certainly moved through those nodes from organ to organ. Or do lymph nodes tend to shrink at the same pace as other tumors? If anyone has similar experience would really love to hear your stories.

Login or register to post replies.

Pages