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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lastexit470's picture
Replies 14
Last reply 3/27/2016 - 9:19am

Hi, my wife was diagnosed last week with stage 3 in her right groin lymph node.  She can feel it, which is why she went to the doctor to get it checked out.  I believe it was 7 cm.  Is that big?  Woudl this be 3c?  They are going to remove the lymph node and everything surrounding it.  Is this correct and what do they usually do following the lymph node removal?  Any suggestions?  She is 36.  The PET scan showed it was contained so far to that one area of her body.  Thank you in advance.  Doug

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/24/2016 - 11:07pm

I need some input. I'm worried about biopsy I had five days ago. Nurse said they didn't get a good stain and had to send it somewhere else. Does this mean it's probably cancer. I've had the mole for years and it hasn't changed but he did a punch biopsy just to check. Could it be something else or should I prepare myself. I have obvious anxiety over this. Any help appreciated ! Thanks!

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DZnDef's picture
Replies 6
Last reply 3/24/2016 - 7:57am

Articles like this confuse me.  Are we supposed to avoid the sun or get more sun to increase our vitamin D levels?

http://www.cancertherapyadvisor.com/skin-cancer/melanoma-poor-outcomes-lower-vitamin-d-levels/article/484874/

Maggie - Stage IV (lung mets unknown primary) since July 2012

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/23/2016 - 5:03pm
Replies by: JuTMSY4, Anonymous, Bubbles

Bin

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CCJ's picture
Replies 4
Last reply 3/23/2016 - 7:41pm
Replies by: CCJ, Janner

Hi..,would someone mind explaining to me what exactly 'ulceration' is which you hear of often and is in the pathology reports. 

Does it mean crusting on the surface of the mole? Or is it the skin has erupted on top of the mole?

Thanks in advance 

Carolyn 

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way's picture
Replies 2
Last reply 3/24/2016 - 12:25am
Replies by: way, Janner

Dear Community, 

I received today the following biopsy report from a mole that I just had removed. I will see the doctor in a few weeks:

"The epidermis shows elongation of rete ridges. Large, irregularly-shaped nests of melanocytes are seen along the basal layer. The cells show mild nuclear atypia and contain fine melanin granules. A rare abnormal mitotic figure is noted. Intraepidermal spread of single melanocytes is also noted on melan-A strain. ki-67 demostrate a low proliferation index. There is papillary dermal fibrosis and a superficial perivascular lymphocytic infiltrate present, along with melanophages."

How does it looks?

Thanks!

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jodaro's picture
Replies 2
Last reply 3/22/2016 - 5:42pm
Replies by: Janner, jodaro

Hi All,

Quick backstory: first time at the dermo late last year for a mole that my family thought looked weird. Doctor decided to shave biopsy that one and another one. The first one was normal, but the other one ended up being stage 1b, .75mm melanoma. Follow up WLE got clear margins. Went back in a few weeks later for the full scan, was told "you have a lot of strange moles." Identified a handful to watch, 3 of which got shave biopsied soon after, and all three came back normal.

I had my 3 month check today. After a full scan the doctor identified three more that she thought were worth getting biopsied. Two on my right leg (outside of knee and uppper thigh) and yet another one on my back (that will be 5 total on my back, its probably 7 inches from the original melanoma).

As it stands the plan is to shave biopsy the three. It sounded like the doctor wasn't totally ruling out, however, going straight to a full local excision of one or more. I guess the third option is to wait another three months. The one on my knee maybe might have changed/grown a little from last time, but it could also just be a measurement margin of error.

So, in your experience and opinions, what would you do next? Anyone been in a similar situation? I'm not averse to any of the procedures or scars, those are preferable to the potential alternatives. I'm leaning toward the shave biopsy as it's somewhere in between the other two extremes, and my doctor seems to think that's a good plan. If they are all clear, great, done for now, I've got some new tiny scars that I'll forget about. If not, then we go from there. However, are there benefits to getting them fully excised right away, aside from the potential of having to go back and do that anyway?

Thanks!

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Sce1's picture
Replies 2
Last reply 3/22/2016 - 4:12pm
Replies by: Sce1, keepthefaith11

Before Christmas I posted here about my 6 year old with a mole that was changing quite a lot. We saw the dermatologist and as the system here in th UK is that when you see your gp (everyday doctor) with a suspicious mole you have to see a specialist dermatologist within two weeks. WWe saw the dermatologist and she started the conversation with a quick look saying it was fine, come back in 12 months. After about 5 minutes she them said no maybe 6 months, no 3 months and see the paed specialist dermatologist. She was obviously someone who needed to verbally process stuff but it scared the life out of me. I felt like she didn't know what she was doing. However,  my husband ... ever the optimist said all would be fine.  With husband away on military deployment I took our son to the second appointment on my own,  expecting to be told I was an over anxious mother. Not at all. The paed dermatologist took one look at it and said 'right that'll need to come off' she said they could do it there and then. She was 50/50 about it being a benign spitz nevus or a melanoma. She said that as melanoma is so rare in children this was on out side. I couldn't have it removed there and then. I knew I'd need to prep him and she was happy to wait a couple of weeks for me to prep him and to be honest myself.

Today he had the removal. I made a little cartoon (not that I'm great at drawing)about what would happen and this really helped him to stay calm. He had gel to numb it a little and then the needle for the local anaesthetic which was horrendous in that my usually 'nothing bothers me' 6 year old was screaming in pain. Obviously this only lasted about 5 ,in items but it was very upsetting. Next the dermatologist then cut the mole out, it was about 12 mm diameter and at present she only for about another 2 mm outside that as she thinks it is benign at present. It will now go to the lab and we will find out later this week about what exactly it is.

I guess I'm posting in one way to share this with people who will understand the sheer fear of what it could be and possibly in case there are other parents who may gp through similar. Also though because during the weeks of not knowing I have found comfort in reading people's experiences on this group. Some stories are of terrible sadness,  some of great hope ... even though, God willing,  my son may not end up having melanoma I have found reassurance here that you should always be vigilant and not feel guilty for being posssibly over cautious.

Whatever the outcome this week I would like to stay on this group and wish everyone well. 

Beat wishes 

Shamaine xxx 

Sce

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Anonymous's picture
Anonymous
Replies 0

Had an complete excision for a compound nevus moderate atypica because the shave biopsy did not get clear margins.  Pathology diagnosis from the excision states: compound nevus moderate atypica, scar tissue from shave biopsy, clear margins.  Also noted twice in the diagnosis is recurrent nevus phenomenon.

Is recurrent nevus phenomenon due to the scar tissue from the prior shave biopsy or because there was margins involved the mole came back to the surface from the time the shave biopsy was done to the two months waiting for the complete excision?  

Was reading about recurrent nevus phenomenon and some articles mentioned it can be difficult for pathology to decipher the characteristics of a biopsy scar to melanoma, especially without the original shave biopsy slides to compare with the excision slides.  Both pathology was done at the same lab so I am assuming both slides were used to compare.  

Just want to gain all the knowledge I can to be my own best advocate...Thanks for the help! Kate

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/22/2016 - 9:29am
Replies by: Janner

What % of the U.S. adult caucasian population gets one primary melanoma?  What % gets more than one?

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Happy_girl's picture
Replies 6
Last reply 3/22/2016 - 10:15pm

I just had my appointment and am officially 2 years NED at stage 3a!!!! For some reason this one was really emotional for me.  Thanks for always being there to listen!

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An URGENT message from the MRF's Executive Director:

"Friends,

The Food and Drug Administration (FDA) is poised to implement a new regulation that will dramatically reduce the incidence of the most common cancer in the country – skin cancer.

The number of Americans who have had skin cancer is estimated to be higher than the number of all other cancers combined. Melanoma, the most serious form of skin cancer, is deadly, and takes the life of someone in this country every hour of every day. All skin cancers, including melanoma, are tied to one common factor—exposure to ultraviolet (UV) radiation.

For much of our history, UV radiation was a matter of being in the sun. This changed with the shift to a culture that beautifies tanned skin, and—most significantly—with the introduction of tanning beds.

Today most cities have more tanning salons than they do Starbucks or McDonalds, despite the fact that the World Health Organization (WHO) has reported tanning bed lamps are proven to cause cancer and the U.S. Surgeon General has called on the nation to limit underage access to this known carcinogen. And, as research is increasingly proving, tanning is an addictive behavior. This might sound similar to the tobacco narrative we all know well – people are becoming addicted to something that will kill them.

Meanwhile, tanning salons across the country are promoting their services preferentially to young adults. Prom packages, spring break deals, and discounts with college student cards are all part of a concerted effort to hook teenagers on tanning.

Imagine your daughter, sister, cousin or best friend – a young woman with the whole world in front of her. A spot on her arm turns out to be melanoma. In that instant everything changes. She may be left with a scar, but also with wandering cancer cells that find fertile ground in her lungs, her liver, her bones, her brain. She may not live to turn 30.

I have met this young woman and so have you. Melanoma is the leading cancer diagnosis for women in their 20s. It is the fastest growing cancer in the world, and one that has managed to elude some of the world’s greatest researchers and scientists.

Indoor tanning beds are driving a cancer that affects nearly 5 million people in the U.S. every year. At what cost? Besides thousands of lost lives and immeasurable heartbreak, skin cancer – a cancer that is one of the most preventable – costs the U.S. more than $8 billion every year to treat.

The FDA has taken years to respond to this public health crisis but now, at last, the agency is taking action. It has proposed a rule that will ban the use of tanning beds by anyone under the age of 18. But this rule will not become law unless we, as a nation, support it.

The FDA made these proposed rules available to the public and we have the opportunity to show our support. The deadline to submit comments is today, MONDAY, MARCH 21, and I urge everyone to take five minutes to tell the FDA why we must unite as a nation to protect our youth from future cancer diagnoses. We have the chance to save millions of young lives, and we must not squander this opportunity.

We do not let 10 year olds buy cigarettes, or 12 year olds buy alcohol. Why? Because as a society, we protect our youth so we can watch them grow up to become the next promising generation. We must not let them down by failing to protect them from cancer-causing tanning beds.

This year about 150,000 people will learn that they have some form of melanoma. The vast majority of those people will receive that news because of UV radiation. This FDA regulation will, if enacted, change this.

Take action before it's too late.

Tim Turnham, PhD
Executive Director
Melanoma Research Foundation"

TO COMMENT ON THE FDA'S PROPOSED TANNING REGULATIONS: Click the link below and scroll down to the "How to Comment on the Proposed Rules" section.

http://www.fda.gov/…/Newsr…/PressAnnouncements/ucm477434.htm

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vickiaa0529's picture
Replies 12
Last reply 3/22/2016 - 10:24pm

Hi

Does any one the odds of reaching remission at Stage3

I am not sure what I am going to be staged at? I am having more nodes removed on April 4th. I am really scared. It seems like everyone's melanoma keeps coming back. I have not heard a lot of positive stories.

Will I have a normal life ever again? I am scared for my husband and family.

Thanks

 

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pookerpb's picture
Replies 12
Last reply 3/23/2016 - 9:06pm

Yesterday I lost my best friend of 30 years. My husband lost his long battle with this terrible disease yesterday. the last couple months were so heartbreaking for us all to see. I think being young and healthy otherwise made his him fight for too long. He is not at peace. Please pray my children and I can get through this difficult time and face life ahead. I miss him so and keep thinking he will walk through the door any moment. I am thankful for the all of the trials he was in as I truly believe it gave him two extra years we wouldnt have had without them.

 

Krista

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MartyM's picture
Replies 5
Last reply 3/22/2016 - 5:25pm
Replies by: Janner, MartyM, Anonymous

About a month ago I noticed a tiny freckle-like brown mole on the top of my foot had developed a very black dot on it. Went in for biopsy and came back as melanoma in situ. Two days later I find out I'm pregnant. My concern is regarding the biopsy, the dr said they didn't get clear margins and regardless I need to have a wide excision. I will have my excision Tuesday exactly two weeks after the biopsy was done. My fear is that because of my pregnancy (hormones and immunity being suppressed) that during the past two weeks the remaining melanoma has spread. Obviously I don't know how the mechanism of spread works but is there any way that the residual melanoma has turned into something deeper during this time frame?? 

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