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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Paul26l's picture
Replies 2
Last reply 4/29/2016 - 6:42am
Replies by: Tamlin, m355
Dear All,
 
I have found this forum as I am seeking advice regarding my histopathology results and I've decided to post a new topic since I believe that I will find people here who will be able to advise me. I will be genuinely grateful to anyone who would like to read it or assist.  If there are any doctors  who would like to share their opinion I would be indebted too.
 
I am 26 year-old white man ( from Europe) who has blond hair, blue eyes and plenty of moles ( more then 50) on my entire body.
But my story starts now: I had a mole excised.  The mole was localized on  the fifth toe of the right foot.
I received a recommendation to have it removed from my dermatologist which I followed.
I can't remeber for how long this mole was present on my toe, however, I noticed it around 1,5-2 years ago, but I did not consult it with any doctor that time. The mole never hurt or bleeded.  
Now I received the results of histopathology which is: "Naevus Spitzi compositus pigmentosus ( Excisio completa)".
 
I am worried since I have read about the cases where melanoma was erroneously recognized as a Spitz Nevus.  It happened due to the the fact that Spitz Nevus and melanoma show a very close resemblance to each other and are challenging to be differentiated.
Therefore, I am seeking further advise how to proceed with that.  I would like to ensure myself that my mole was a Spitz Nevus instead of melanoma  in order to reduce the likelihood of incorrect diagnosis. I have found out that sometimes FISH tests are carried out to examine such sample more extensively.
I also attach the videodermatoscopy image of this mole that I had done before it was removed.
 
Is here anyone who has some experience with Spitz Nevus and would like to share it or advise? .
 
My private e-mail is paulleman26@gmail.com if anyone would like to contact me directly.
Thank you in advance for all your feedback and your time.
Paweł

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m355's picture
Replies 1
Last reply 4/28/2016 - 1:21pm
Replies by: Janner

This one is a doozy!!! As much as I would prefer a MIS, it appears to me a stage 1A since there is a breslow depth of .32.  They are treating as a stage 1 which I am okay with being aggressive.  I am having sent to my other dermapathologist back home for his review too.  Of the 4 derm path. 1 said MIS, 1 undecided, 2 for stage 1.  The mole appeared new or was a super light freckle (cant really tell on my professional pictures).  The 0 mitotic rate is throwing them off too...

Here is lab report:

A) Skin, right upper back, punch biopsy: Severely
atypical compound melanocytic proliferation, see
Comment.

COMMENT:
This is a worrisome lesion, with epidermal atypia
(pagetoid extension, confluent growth) consistent with
melanoma in situ and a dermal component that also
demonstrates atypia with areas of morphologically
similar cells to the epidermal component, but also some
 reassuring features (dispersion with increasing dermal
 depth, absence of mitoses). These findings engender a
differential diagnosis that could reasonably include
melanoma in situ evolving within a dysplastic nevus or
a superfically invasive melanoma. Given this
differential, it would be reasonable to treat this
lesion as if it represents a malignant melanoma with
the following prognostic factors: Breslow depth 0.32mm,
 Clark's level II, 0 mitoses/mm2, no ulceration.
 

MICROSCOPIC DESCRIPTION:
A) Sections show a punch biopsy with a compound
melanocytic proliferation. The junctional component
shows crowding, with fusion between adjacent rete and
horizontal nests. Areas of upward extension of single
melanocytes and nests are seen, and highlighted by
Melan-A. Intraepidermal melanocytes show cytologic
atypia, with nuclear enlargement and abundant
cytoplasm. A patchy lymphohistiocytic inflammatory
infiltrate is present. The lesion is free of the punch
biopsy margin. Additional step sections are examined.

 

 

Melan A test is positive
 

Let go let God! Looking back will never move you forward!

MIS  (9/2012)

MIS  (2/2016)

MIS or stage 1A, mitotic rate 0, no ulceration, .32 Breslow (4/2016)

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Scooby123's picture
Replies 1
Last reply 5/3/2016 - 2:33pm
Replies by: WithinMySkin

Hi guys,

Anyone got any good travel insurances due to having a brain met treated resent my travel insurance company will not insure me . Some ones I've tried which say been turned down for travel insurance try us have been within the 2000 pounds mark. 

Hope you all having a good day 

Scooby23❤️

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MELK's picture
Replies 11
Last reply 5/4/2016 - 1:50am

I had melanoma on mt liver but then it went into my bone marrow. I was put on Keytruda and had a few blood transfusions and according to my blood results the Keytruda killed the cancer in my bone marrow. It saved my life. I had three infusions all up but then got the side effect of liver autoimmune disease, where my own body was attacking my liver, inflamming it and blocking the bile duct and giving me lots of stomach aches. I was put on steroids and had a two week break from the Keytruda.
Two weeks after going back on the Keytruda, I started getting pain in my back. A CT scan showed new tumors in my spine, cervical and thoracic.
My Oncologist says the cancer has become resistant to the Keytruda, in other words the cancer is blocking my T cells from killing them.
I am wondering if anyone has had similar experience. I had another Keytruda infusion today as I want to give it a couple more goes, bug i am also thinking i could ask about other PD 1 drugs.

Being positive for everyone out there
Mel

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jennunicorn's picture
Replies 13
Last reply 5/4/2016 - 1:51pm
Replies by: wasserd, jennunicorn, vickiaa0529, DZnDef, Anonymous

Wanted to mention a great book I am reading, which is also a PBS three part series that I just finished watching on Netflix. 

The title is The Emperor of All Maladies and it's a biography of cancer. The book is 600+ pages full of lots of history and science. The three part series which you can find on Netflix and probably other streaming devices as well is also great and takes much less time to get through. 

My favorite part is toward the end, in the third part of the series about halfway through, they finally get to immunotherapy. It still boggles my mind how much a mystery cancer still is to scientists and how far we still have to go, but also how great it is that science has come incredibly far in a short period of time, something that probably seemed nearly impossible just thirty or forty years ago.

Just wanted to share that with you all.

Next on my reading list is a book that just got released yesterday, A Series of Catastrophes and Miracles: A True Story of Love, Science, and Cancer.

http://amzn.com/1426216335 (the link to it on Amazon)

Here's the synopsis:

"After being diagnosed in her early 40s with metastatic melanoma—a "rapidly fatal" form of cancer—journalist and mother of two Mary Elizabeth Williams finds herself in a race against the clock. She takes a once-in-a-lifetime chance and joins a clinical trial for immunotherapy, a revolutionary drug regimen that trains the body to vanquish malignant cells. Astonishingly, her cancer disappears entirely in just a few weeks. But at the same time, her best friend embarks on a cancer journey of her own—with very different results. Williams's experiences as a patient and a medical test subject reveal with stark honesty what it takes to weather disease, the extraordinary new developments that are rewriting the rules of science—and the healing power of human connection."

Hope everyone is having a good 'hump day' :) 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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keepthefaith11's picture
Replies 3
Last reply 4/27/2016 - 7:46pm

My dad was diagnosed back in December with Stage 3C melanoma. He just had his first CT scan a few weeks ago. Something showed up on the liver which they did not worry about but decided to do an MRI anyway. Turned out to be nothing.

Also, they saw something in the lymph area where the lymph nodes have been taken out in January. He did an ultrasound which showed nothing suspicious. The radiologist then said he still wanted them to take another look because the CT scan did show something. It is apparently very deep in there so the ultrasound might have missed it.

I asked if they could compare the CT scan he had when they planned the radiation treatment. Once they did they saw this "something" was there in the February CT scan as well. In that scan they said it looked like a fluid buildup from the surgical clips. Still wanted him to have a biopsy on it though.

He did that today and they ended up doing a core biopsy so apparently whatever it is it is a solid mass. The doctor said that whith radiation a fluid build up can turn into a solid mass. We are hoping this is the case. She has never seemed too worried about this issue, so hopefully it is nothing. Does anybody have experience with this particular scenario?

Thanks,
Annie

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sseuregitong's picture
Replies 7
Last reply 5/1/2016 - 12:33am

Hi everyone,

I was recently diagnosed with a large (10mm) melanoma behind my ear. I'm a 30-year-old male in fairly good health. As far as I know, I have no family history of melanoma except a half-sister who was diagnosed with stage I about 10 years ago and has had no further complications. I live in Korea, where melanoma is extremely rare. I don't speak the language well, so my treatment has been very stressful and often confusing. My test results so far have been good, though.

PET/CT - no evidence of distant metastasis

Ultrasound of lymph nodes - no evidence of metastasis

Wide excision biopsy - no evidence of local metastasis

While I'm of course happy about these results, I have a few concerns about my treatment here.

1) I did not have a sentinel node biopsy. From what I've gathered online, a sentinel node biopsy is standard procedure for Stage IIC, especially for a melanoma as large as mine. I will be asking my oncologist about this when I see him again in a couple days.

2) My dermatologist told me that one year of high dose Interferon Alfa injections is mandatory treatment for Stage IIC in order to prevent recurrences of melanoma. However, when I met with my oncologist, he told me it is optional, and many doctors think the severe side effects outweigh the potential benefits. Further research online suggests that Interferon is not particularly effective in reducing recurrence rates. Is Interferon necessary/worth the risk for treatment of Stage IIC?

Thank you for your help!

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HopefulOne's picture
Replies 4
Last reply 4/27/2016 - 5:18am

My husband has a world-class neurologist and awesome melanoma specialist at Jefferson in Philly. Our oncologist reviewed my hubby's recent MRI results with us and showed us a "white" area that seems to be at C4 and has a hook to C5. She said the neurologist had no idea what it is but didn't think it looked like cancer. I'm baffled that someone of his caliber can't guess at things it could be. They are doing a PET Thursday to see if it lights up. It just keeps bothering me ... Was wondering if anyone else has run across something like this. Thanks. Kimberly

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Bradley75's picture
Replies 10
Last reply 4/27/2016 - 4:16pm

I was diagnosed stage 3b last year.  I have been NED my lymph node dissection last May.  The past few weeks I have been dealing with a headache that just won't go away.  The initial thought was a side-effect of my Leukine.  I have been off shots for 12 days now and still have the headache.  Mayo wants me to have a brain MRI this Thursday.  I am freaking out about it because I have heard many horror stories.  I have read posts on here about them from time to time and that adds to my concern.  Anyone have experiences to share that can help calm me down? 

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/26/2016 - 1:23pm
Replies by: exfakebaker, Janner

Hi!  I am a pre-melanoma person at this point.  I am a redhead/pale skinned person who grew up in the era of everyone using tanning beds (I'm 31).  Used them every spring from March-May or so, then spent the summer with sunscreen on my face/shoulders and not really anywhere else (on weekends).  Usually had a tan until about August, then let it fade out.  This went on from about age 16-30, with a couple springs/summers that I sat out on because of pregnancy or one year when I didn't think tanning was good for me at age 25.  Also remember having sunburns as a child.  However, to my knowledge, there isn't melanoma in my family (other skin cancers though).

I used to see a dermatologist once a year (for 2-3 years) when I was 24-27.  Nothing ever found, but did get the tanning lecture.  I moved to another state and didn't have a dermatologist anymore for 3 years, during which time I also wasn't tanning much (pregnancy).  

Last spring, it occurred to me that I hadn't had myself looked over in awhile.  Also, I had been tanning for about a month when it all just started to seem like a bad idea to me and I had a gut feeling I should do something about it all.  Scheduled an appointment at the Dermatology and Skin Cancer Center of Kansas City with a nurse practitioner and got in to see her.  

At that visit, she looked me over completely and found one mole that she "didn't like" and burnt a spot of "precancer" off my face (a place where I said I get a recurring/scaly zit frequently).  That spot seems to be fine.  The spot on my middle back, the mole she didn't like, turned out to be severly abnormal (not melanoma but they described it as "imminent") and required an excision.  That was quite a scare and totally changed my attitudes on tanning.  I monitor sun exposure now and don't tan, but I fear the damage has already been done.  

When I went in for my excision, I was then seeing a "real doctor", so I asked her to look me over as well.  She described herself as "OCD about moles".  She found four more moles she didn't like, and I pointed out a pinkish spot on my upper back that concerned me.  All 5 were biopsied.  The moles were all atypical but normal, and the pink spot was moderately abnormal, requiring a second excision.  She noted that I have "weird moles all over", but only biopsied four of them.  I really do have lots of moles all over (not like google pictures of 'atypical mole syndrome', but a lot on my back, stomach, and legs.  It would be nearly impossible to biopsy them all.

That was all last October.  I haven't been back to the dermatologist since then, although I do have an appointment coming up with the nurse practictioner again in a week and a half.  I think the upcoming appointment has stirred up my hypochrondria/health anxiety.  I have been checking my skin over, and have found several atypical moles (on my legs) that concern me.  Unfortunately, I wasn't doing self skin checks rigorously since the second excision because I made the mistake of letting myself feel like the worst was behind me for a few months and let it all go for peace of mind.  Anyway, I have found several moles and at least one pink spot on my back.  I am unsure if they've changed much if at all, but I would assume they've all been there for the past few months.

Does anyone else have these spots/atypical moles all over themselves?  What do you do to stay on top of it all?  Am I going to end up looking like a scarred/pincushion because of all the mole removals and excisions (better than cancer, I understand that much)?  Have I already done too much damage and this is my penance?  Just looking for other points of view and stories while I wait for the appointment.  I've been lurking in the forums and everyone seems supportive and very helpful and I wanted to join and get some perspective from people who've had similar experiences as nobody I know in real life does!

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Kimberann0912's picture
Replies 3
Last reply 4/26/2016 - 9:11pm

I was diagnosed in May 2012 with melanoma at 23 years old and 6 months pregnant with my second daughter. I went to what they call a salud clinic which is a half priced clinic in my opinion. The doctor for one, had his nurse Call me to tell me I had melanoma but she knew nothing! I couldn't even talk to the doctor himself! And she called me on a Friday at almost 5 pm! I saw a surgeon that following Monday he never even told me a stage. Saw an oncologist and he didn't explain much of anything. I had a local wide excision as well as sentinel node biopsy done July 2012 and it came back clear. I have just been seeing a dermatologist regularly. Until one day I heard of someone that it reoccurred in after 5 years. Now I'm like what!!! Was I supposed to be getting yearly pet scans and blood work?! Nobody said anything. My original melanoma was a 1.1 mm with a mitosis rate of 1 per 2. I don't even know what stage that would have been!!! Help! 

Kimberly A. Smith 

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Patrisa's picture
Replies 1
Last reply 4/25/2016 - 2:14pm
Replies by: DZnDef

Dear fellow fighters,

 

I just wanted to share with you words from my fathers oncologyst....

Today he had his 3month check up (and his 5th dose of Keytruda) and his largest (5x5cm subcutaneous melanoma) is now smaller than 1cm (it can not bee seen anymore, just felt under skin)...Other smaller ones have completely dissapeared.... She said he has AMAZING results (we just have to wait for CT in May to see how he s doing "on the inside (mets in his lungs).... She said she has never seen such good results in such a short period on Keytruda.....

Now, what i am aiming at is: My father hasn t changed his diet at all (he is diabetic - but doesn t follow hid diet  rigorously). What we did the moment we realized his melanoma has returned, we made him start drinking aronia (chokeberry) juice every day....I have read that it has amazing health benefits, among them also anti cancerous activity and he has been drinking it every day for past 4 months....

Maybe this juice helped him achieve such good results? I really want everyone of you to give it a go, it really can t hurt, because it is really healthy stuff, but we kinda feel it helped him achieve AMAZING (as the doctor put it) results....

Anyway, i just wanted to contribute to this wonderful forum and maybe help in a way.....

Best wishes to all of you....!

 

Patrisa

 

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Hamlet1987's picture
Replies 6
Last reply 4/25/2016 - 5:40am
Replies by: Hamlet1987, Janner, MoiraM

Hi guys

I am looking for some information but was not able to fine it anywhere. 

Hope someone has an idea. 

In October 2015 I noticed a new big mole on my inner right tigh. It was around the size of a pencil eraser and dark brown. 

Didnt worry too much until i read up on skin cancer. Was in Europe in December and had it checked by a dermatologist. He checked it with his tools and said it looks normal. He also shaved it of during the consultation. Now there was a tiny bit of black on it which kind of worried him and he wanted to have it checked in the lab. Since my health insurance does not count in Europe I asked him if it was really necessery. He agreed to shave it of and take another look at it. I left that day without the biopsy. 

So, now im getting kinda paranoid and regret not having the biopsy done. 

Im back home and want to a dermatologist the other day. Told her my story and concerns. Showed her pictures of the mole and she wasnt worried. However, she said we coulndt do a sking biopsy since the mole has been removed  completely. 

Now my question is, can I still have this checked out? And how?

Im going back to another derm this week and probably want a skin biopsy. They should still be able to trace this if there was any cancer in it right?

Looking forward to your advice. 

Thanks guys!

Cheers

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GreggL's picture
Replies 7
Last reply 4/27/2016 - 8:17am
Replies by: Anonymous, Ed Williams, JuTMSY4, geriakt, GreggL, Bubbles

A couple months ago they found a tumor on my lower right lobe of my lung. Of course all my family and friends were saying it's probably nothing but I knew better. I've never had a tumor on my lung in my entire life, now being off Interferon for almost 5 months they find one. I had surgery to remove the tumor on 4/6/2016 and it wasn't pleasant to say the least. The were considering doing the needle guided biopsy then decided with my history just to be safe and cut it out. The surgeon came in the next day and said we don't have to wait for the pathology report he said it was melanoma which moved me to stage IV. I was actually ok hearing that because I already had two months to prepare since they first found the tumor. They said I did not qualify for a clinical trial right now because I had already been through Interferon, had so many surgeries and now there is no evidence of disease since they just cut it out. She said if it ever came back again I will qualify for one. My oncologist did want to start me on Keytruda though for at least one possibly two years. Her thought was that hopefully it could kill any microscopic melanoma that the scans won't pick up. The day I went in for my first Keytruda treatment (4/20) she said she would be giving my Opdivo instead. I was actually kind of happy to hear that after the little bit that I have read about both meds. I was wondering what your thoughts might be on that? Deciding to switch to Opdivo instead of the Keytruda that she originally planned on. I will say I'm a combat vet and I go to the VA so I was curious if price might have played a role? Would love to hear your thoughts. Thanks...

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laulamb's picture
Replies 14
Last reply 4/29/2016 - 1:03pm

Hello! 

I has a melonoma on my back and had wide area incision and sental lymph nodes removed.  The surgeon called to tell me cancer was found in 1 of the 3 lymph nodes but it had not broken through the capillaries.  He said that was very good.  Can someone please explain that?  He would like to remove more lymph nodes but I told him my oncologist had a PET scan set up for this Friday 4/29 and I am meeting the oncologist to go over the results on 5/3 in the morning and then follow up appointment with the surgeon in the afternoon of 5/3.  

The surgeon wants to wait to see the PET scan results (surgeon did say, which I am sure will be negative) and then will discuss with the oncologist the next step. 

I guess this would make me Stage III ... Can anyone give me any recommendations or feedback from this information?  

I am very sad and trying to hold it together but I was so expecting to hear there was no cancer in lymph nodes. I even met with the oncologist before surgery and he assures me with my tumor size of 1.3 mm I had nothing to worry about.  

Thanks in advance for any replies.

Laura 

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