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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Anonymous's picture
Anonymous
Replies 0

For those of you who responded to my queries about coumadin and biopsies, I wanted to thank you again and let you know that my husband's biopsy today went very well and that he did not have to stop his coumadin.  The surgeon said he thought the lesion was squamous cell and no danger but we'll get the formal results within a week.  We don't anticipate further issues.  The personal stories you shared alleviated so much stress for me.  Thank you all!

 

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Sorry for wimpy question.  I am having two of these on upper/lower back for "evolving melanoma in situ" and a severe atypia.  Think both are 5 MM margin cuts.  I choose local against surgeon recommendation for general anethesia. He said--this will hurt!

Any advice for pain/nerves for this procedure under local only. wasnt nervous until he said it would hurt and started thinking about the whole dx and the surgery.  thanks for all the great posts and feedback.  This site has helped me a lot in the last two weeks understand something i didnt know anything about.  THANK YOU

Jason

jason

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Photopassion's picture
Replies 2
Last reply 7/26/2017 - 5:43pm
Replies by: Photopassion, AZSoCal

I just got my pathology report from a mole that recently developed a dark spot within it (during pregnancy, if that's relevant). It was officially diagnosed as a junctional spitz nevus in a special site.

After reading about the spitz nevus, I became worried since they normally occur in children and are often very similar to melanomas.

My doctor told me it was benign but recommended getting it excised with 2 mm borders which I plan to do. I'm thinking about getting a second opinion on it from another pathologist just to be sure.

In the meantime, I was wondering if anyone could help out with the pathology report to see if it sounds like melanoma was confidently excluded. Everything I read about the Spitz nevus and the sudden change in the mole made me very anxious. Thanks!

There are sharply demarcated nests of large spindle and epithelioid melanocytes confined to the epidermis which shows hyperkeratosis, hypergranulosis, and hyperplasia. These nests are relatively uniform in size amd shape, and vertically oriented. A lymphohistiocytic perivascular infiltrate, dilated blood vessels, and edema of the papillary dermis are noted. Additionally, significant loss of P16 expression is not noted throughout the melanocytic population, a reassuring feature. An MITF immunostain is done and no significant upward spread of melanocytes is identified. Multiple deeper sections were studied.

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Anonymous's picture
Replies 3
Last reply 7/27/2017 - 10:56am
Replies by: Jamie1960, geriakt, Prd10

Hello all,

I was diagnosed with melanoma in situ in the matrix of my left thumbnail in late 2012.  The tumor was excised using slow Mohs surgery in Dec 2012 - margins pronounced clear.  

In Sept 2015, I underwent a 2nd series of slow Mohs excisions of the same area after a biopsy of pigmentation of skin in the same area as the tumor was declared to be "dysplastic nevus".  Again the margins were "cleared". The wound encompassed the top of my thumb, including a small portion of the tip, almost to the knuckle and extending the full width to either side.

In June 2017 a new freckle appeared in the same area near the site of the original nail bed.  There is also slight darkening of the area around the small stub of nail that has regrown (twice).  Biopsy revealed "Junctional melanocytic proliferation, recurrent, extending to the deep margin".

The pathologists comment was: Given the history of melanoma in situ, as well as an atypical melanocytic proliferation worrisome for recurrent melanoma at this site, a complete excision is recommended in order to ensure that this lesion does not re-recur.

At the follow-up with my dermatologist, he stated that due to the previous surgeries having gone down to the level of the bone and the extent of the area removed, he wondered if he would be able to give me clear margins.  Also, since this is the third time abnormal cells have appeared, there is some reason to think they will keep growing in that area.  So, he referred me to an orthopedic oncologist and the treatment plan is amputation of the distal phalanx of my thumb.  

Has anyone else had a similar experience?  I am having a hard time scheduling the removal of half of my thumb (although it is on my non-dominant hand), but I understand that the reccurrence of abnormal cells and the lack of tissue at the site have led to this recommendation.

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selenarae's picture
Replies 2
Last reply 7/27/2017 - 9:46pm
Replies by: selenarae, SABKLYN

I had a mole biopsied in early March and it came back as a "Compound Melanocytic Nevus with Moderate-to-Focal Severe Atypia". The lesion extended to the deep biopsy edge. I then had it excised and got myself a tiday 18 stitched in my back and there was no remaining nevus after excision.

Now, a couple of weeks ago, I had 4 other suspicious moles biopsied. I just got the results and only 1 is recommended for excision with the other 3 being given the option of "wait and see" or "excise if you want to"...My question is, what would you do? I'll be discussing all of this with my doctor, of course, but I'm curious about other people's opinions. After describing the 4 lesions, I'll add other details.

These are the 4:

1) Lentiginous Junctional Melanocytic Proliferation with Moderate Atypia. The lesion extends focally to the deep edge. Conservative re-excision of this lesion is recommended.

2) Lentiginous Junctional Melanocytic Proliferation with Mild Atypia. The lesion extends to the peripheral biopsy edge.

3) Lentiginous Junctional Melanocytic Proliferation with Mild Atypia. The lesion extends to the peripheral biopsy edge.

4) Compound Melanocytic Nevus with Mild Atypia Extending to Deep Edge.

OK, so obviously #1 has to go. I think #4 is fine, with monitoring, and doesn't need further excision.
 

#2 and #3, however, though they have mild atypia, extend to the peripheral biopsy edge. In my lay opinion, it seems to be that the medical assistant just didn't cut widely enough, and missed getting some of the mole at the surface level. Would that be a case where they could just re-do a wider shave, or is it OK to just leave alone and watch it? The reason I am hesistant to excise any more than I need to, is because #s 1-3 are all along my spine. :( I'l already concerned about having a "conservative excision" so close to the middle of my spine, just under my bra line. Then again, I figure if they are going to cut me at the top of my spine, what's 2 more cuts? 

I'm pretty new to this and I know these have not yet reached full melanoma status, but I feel like I am working to stay ahead of them, so that they don't have a chance to turn into melanomas. Any insights would be greatly appreciated. 

--Selena

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Anonymous's picture
Anonymous
Replies 10
Last reply 7/30/2017 - 9:31am

  If one had to choose one over the other--which would it be?  Does one have fewer side effects?  I realize everyone will resond to the treatment differently.  I just would like some input on why one is "better" than the other.  

Thank you

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Mat's picture
Replies 3
Last reply 7/28/2017 - 8:48pm
Replies by: Bubbles, Mat

Hi folks, I'm generally doing well and will post a more detailed update.  In the meantime, question--my latest side effect is pneumatosis (gas bubbles in colon wall).  It is asymptomatic, but has been showing up on scans--and increasing--over the past several months.  Has anyone seen this as a side effect of treatment (nivo) or prednisone use?  If so, how has it been treated?  Thanks.

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/26/2017 - 5:47pm
Replies by: AZSoCal

Hello Everyone,

First off, I just want to say that my deepest thoughts, prayers and condolences, are with everyone fighthing this horrible disease. I feel bad for posting my maybe good news on this forum because everyone else is going through so mucj, but I am not sure where else to go for some advice in this subject. About 7 months ago, I was diagnosed with Stage 1a melanoma at a depth of 0.23mm with regression present (Did not specify how much) and no mitotic activity (0 mitosis per square). It did not contain any other worrisome factors such as ulceration, lymphocytic inflatration, etc. so in that sense it was a low risk lesion. Even though it is a low risk lesion, I was having trouble psychologically dealing with this and moving past it. I would constatntly think about this returning and coming back, and it has been on my mind daily sense my diagnosis. When I did receive my diagnosis I asked if we could send the slides to another pathologist for a second opinion to hear their thoughts and just confirm the original one. The pathologist that the slide got sent to has specialized in second opinions on melanoma for around 20 years now, and he has over 30 years of experience researching and dealing with melanoma, and is considered one of the experts in his field. Anyhow, my lab group ended up sending the slides to him and he took a second look and just recently about one week ago changed my original Stage 1a Melanoma to a severly aytpical melanocytic hyperplasia. I have already had the WLE done on my original site and all margins were clear with no problems at all. I do realize that my original legion was not extremely high risk, but just the fact that their was that risk messed with me psychologically pretty bad, and it was affecting my day to day life. When I got the second opinion back from the other doctor, I really just could not believe it and still cannot. I mean to have this actually not have been cancer would mean so much to me mentally and I am not sure what I should do at this point. Should I take the second opinion and be overjoyed with the good news? Do you think I should get a third opinion, what is everyones thoughts. Thank you everyone for taking the time to read this post, and again, my thoughts and prayers with everyone going through such hard times at the moment.

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Andrea in Nashville's picture
Replies 1
Last reply 7/26/2017 - 5:42pm
Replies by: AZSoCal

Hi guys,

First time posting but I've been lurking since I was diagnosed in April. Just wanted to share some good news. I was slated to start Ipi on Friday. My oncologist saw the press release about the ipi/nivo adjuvant study and asked my insurance if they would cover the nivo, and they said YES! I can't beleive it and I hope this can help some of you stay away from ipi if possible. 

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Anonymous's picture
Replies 1
Last reply 7/26/2017 - 11:21pm
Replies by: CindyJ

My husband was recently diagnosed with stage IV melanoma which has spread to his lymph nodes.  So far he has felt just fine (physically), and treatment will start next week.   However, the day after an MRI (with compound) two weeks ago, his arm where the IV was became extremely sore as did the areas where the tumors are near his armpit, chest and neck.  His forearm was red and swollen.  This lasted about 3 days and slowly subsided.  I googled and read about extravasation which is a problem that occurs when contrast leaks into the tissue around the vein with the IV was placed.  An article I was reading said it was rare but it happens, and it described his exact symptoms.  We assumed that’s what had happened.   Than late last week he had a CT scan and it happened again.  He was in agonizing pain all weekend.  Saturday you could tell through his shirt that his peck muscle on that side was swollen.  Sunday that was gone but there was swelling around his neck and shoulder.  Today he is starting to feel better.  He just thinks it’s the cancer; the tumors starting to cause pain.  I think it’s pretty odd that it happened each time after those two tests.  However, I researched and was unable to come up with any information that MRI’s or CT scans caused this kind of discomfort, and I know the same compound is not used in both tests.   I’ll ask his Dr. at our next visit, but meanwhile I’m just wondering if anyone else has experienced this. I know we have more serious things to worry about down the road, but I am just wondering if all this pain is from the cancer or from the test.

Thank you

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Casitas1's picture
Replies 8
Last reply 7/27/2017 - 6:56pm

Well, after a long day... An hour and a half drive, (luckily along PCH ) three hours of scans, needles, blood and waiting. You all now the routine! My Oncologist ( Rock Star) after what sounded like an ear full from a not so happy patient next door(These Drs. have highs and lows just as we do) came in and told us your scans are perfect! You are still NED!  Ned and i have been hanging out for a year now and have been off Pd-1 Pembro after jumping ship due to side effects 8 Months ago... Thank you all for loads of support and tons of the best info around!

Best wishes to everyone, Paul

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/9/2017 - 11:31pm
Replies by: Kootenay Kid

My husband sees the general surgeon tomorrow to check out the odd spot on his thigh.  Meanwhile, the spot on my inner lip has grown slightly and is darker, but I don't see the dermatologist for a few more weeks.  I keep thinking she will just refer me back to the surgeon.  Also, in my eye exam last week, the doc told me I had a new "freckle" in one eye.  Now I am worried that that could become melanoma.  I am almost 64 with fair skin and a history of avoiding the sun despite some sunburns as a child.  My friends tell me the new-ish spots on my face are just age marks and I shouldn't worry, but of course since my arm melanoma last year, I am worried about every little change and new mark.  I'm tempted to go with my husband tomorrow (he's seeing the same surgeon who did my WLE and SNB last year) and show him my lip, but that would be so inappropriate.  The heck with hisleg--what about my lip?  Great spousal support, right?  This condition can sure make a girl crazy!

 

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dawn dion's picture
Replies 12
Last reply 7/26/2017 - 12:10pm

Hello all. I have been part of this community for nearly 7 yrs. I was diagnosed in June 2010..seems like a lifetime ago. Several months back I came here looking for advise as to what my next step with Keytruda should be. Had been on it for a yr and a half, same spot, the entire 7 yrs, next to my aorta just wouldn't go away. Some of you suggested radiation with the Keytruda. I went back to my Dr. and fought for it. 5 days a week for 6 weeks I drove 2 hours to Moffitt for a 3 min procedure. In April it as smaller but still there. July 6th I went back for more scans and the words I have been waiting for years to hear where finally said..No Evidence of diesease. I have imagined that conversation so many times over the yrs, never once did I think it would be so emotional. Even mow I am tearing up. It has been such a crazy journey but I want people to know that while I know not everyone's outcome is the same as mine, never give up the fight. They have done so many amazing things with this diesease and continue to do more every day. I can't believe I am finally NED, I will be doing a happy dance for a very along time.

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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QuietPoet's picture
Replies 4
Last reply 7/26/2017 - 5:22pm
Replies by: QuietPoet, Jamie1960

Hello all,

Thanks for allowing a person who feels like they have cancer but "not quite" join the group! I appreciate your feedback even though I'm not going through the difficulties that many of you are. 

I have a stage 1A (.3 mm) that's been biopsied and will have a wide excision in the 31st on my upper thigh. At the same time, I'll have a biopsy of a changed mole on my ankle.

I have two questions: 1) If melanoma cells show up in the margins of the wide excision, what does that mean? What happens next?  2) How much pain/difficulty did you find in recovering from a wide excision on your thigh and/or a biopsy on your ankle?

The biopsy on my thigh became infected somehow and it's been more painful than I thought it would be (there seems to be a very sensitive nerve near there) and it's really interfered with my ability to get excercise. I'm very worries how the wide excision will feel along with the ankle biospy (inside ankle) given that's a place that moves A LOT.

I'd appreciate any feedback from people who have had biopsies and/or wide excisions on their upper thighs and ankles. I have already read what's on the side related to ankles, but those mostly involved skin grafts. Fortunately, this should not, nor should it involve any lymph removal.

Thanks so much!

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/9/2017 - 12:19pm
Replies by: Hukill

In March of this year I was diagnosed with melanoma on the scalp. On May 5th I had the WLE and sentinel lode biopsy with scalp relocation(basically pulled my scalp as tight as it could possibly go to cover the incision rather than a skin graft) despite being a 3.56 breslow depth with ulceration I was very fortunate to have no cancer in the lymph nodes! It has been a long recovery and my oncologist and plastic surgeon tells me that the pain I am continuing to have on my head is completely normal and can last up to a year post surgery, I am wondering if anyone else has experienced this? At times it is very sharp. Despite opting for the scalp relocation to avoid having a bald spot, I have an area where the hair follicles didn't make it (which means bald spot anyways haha) and where the melanoma was is also sunken in a bit. My husband tells me that it has been since the surgery but I feel as it wasn't and is gradually sinking in more (it was on the very back part of my left crown) Not sure if I am making a mountain out of a molehill, while I am super blessed to have had such a great outcome I know I need to stay vigilant to catch any new things that pop up. Thanks in advance!

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