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
Scooby123's picture
Replies 6
Last reply 10/15/2016 - 2:54am
Replies by: Scooby123, Bubbles, BrianP, JoshF

Hi guys not been on for a while due to my mum passing and having to sort out things.
I went for my 3 month check today and was also expecting consultant to book 3 month scans as they are due. I have had a back issue which is causing me pain in both legs. I do suffer from back issues but this id not settling down. When i went today i explained about my back which they are going to do MRI to check. I was very concerned when they said for me to have brain scan and body scan in anothet 3 months time. That would be 6 months not 3 month scan. I had a tumour in brain had treatment last scan showed shrunk and liver lungs stable. I am worried that leaving me another 3 months is too long to check things still ok.
Do any of you guys have 6 month scans with liver lungs and brain activity.

Login or register to post replies.

Replies by: Surf Rower, Anonymous, desertsun, Janner, CHRISNYC

Hello all, glad to have found this forum. Please forgive me for not yet knowing the right terms... I promise to study, but my second surgery is coming up soon and maybe someone has feedback for me on my questions. Two weeks ago I had very shallow 0.2mm melanoma removed from outside upper arm, in a wide excision, by a plastic surgeon I was referred to by my dermatologist. Good job 30 mins local anesthesia, not much pain, minimal scar visible on upper arm. Unfortunately the pathology on the excision indicated one lateral edge still has melanoma, so now there has to be a second, larger excision. I switched to a renowned cancer center in my region. The surgical oncologist there says the first surgeon didn't orient the sample so they don't know what side the residual cells are on (!!!!). It could even be a separate melanoma, so tiny it wasn't seen. In any case, he says he has to remove the entire scar area from the surgery two weeks ago, so it doesn't really matter and it will be pretty big. "Puckered" "divot" and "shark bite" were the not-reassuring words. Of course I am super happy this is only a Stage 1A; being high risk for this at age 62 with a life of sun, when I heard they had not gotten it all I had been very worried and working on my bucket list (more train travel). Here is my actual question, though any feedback on this situation is welcome.   - Does it sound like they need to use general anesthesia for this? He drew on my arm and the excision will be football shaped and about 2.5" long. He said they would have to pull on the skin a lot so they were going to use a "light" general. I don't mind the anesthesia, but it suggests that the surgery is kind of a big deal. The first one was so easy and the stitches were internal; these will be external. Thoughts? Have any of you chosen a plastic surgeon over a surgical oncologist for this size excision? I like both of the doctors. It seems better to be treated at a cancer center, regardless of the cosmetics afterwards, right?  Maybe they make it sound worse than it usually is so we are happy with the scar later. At least it is in a good spot for a tattoo.

Login or register to post replies.

Jango's picture
Replies 7
Last reply 10/15/2016 - 11:46am

Hi everyone, I posted a few days ago because a mass was found in my dads abdomen and he was awaiting a ct scan to tell us more. Yesterday they told us that he has a mass in his abdomen as well as othe spots of cancer in abdomen and a few on his lungs. It has not been biopsied, but is probably melanoma as he had stage 1 mole removed from the same area a few years ago. M biggest fear and concern right now is that he is hospitalized due to overwhelming weakness and loss of appetite. He is fading before my eyes and we are still waiting to be seen by an oncologist. We also live in Ottawa as I noticed a few of you do too. Any advice would be most welcome. This came on so quick. A few weeks ago my dad was strong and robust with an appetite. Please let me know if you have suggestions !

Login or register to post replies.

Monroemichelle926's picture
Replies 13
Last reply 10/19/2016 - 11:05am
Replies by: AshleyS, Anonymous, Monroemichelle926, Joycem, Bubbles, Hukill

Hi everyone!

I guess I'm just here to connect and express my fears, and maybe learn some information I didn't know before.  I am a 33 year old female, and currently 24 weeks  pregnant with my second child.  I went in for a routine mole check a few weeks ago (it's been years since my last) and the doc recommended I get a Melafind scan due to some funny looking ones on my back she thought needed checking.
 I was scanned for 10, and out of those 10, one was dysplastic with a score of 2.1, and the other had a score of 3.4.  The doctor said the both need to come off, and that the one with the high score needs to be checked for malignancy.  He said it so casually that I didn't even think to ask any further questions before I left.  Is he saying I could have cancer?  Like, right now?  I guess it's not sinking in or something.  I feel fine.  My pregnancy is going great; no issues.  Good appetite and weight gain.  Baby is strong and growing perfectly.  It's a small, flat mole; no ulcerations or irritation.  Can I feel at ALL assured that if it IS malignant, it would be just a 0 or 1 stage?  I just feel like I'd feel sicker if it were more advanced then that. 
I know no one here is a doctor.  I hate when people ask for medical advice online, and here I am doing just that. Any thoughts would be welcomed...thank you in advance!

Login or register to post replies.

Hello everyone!

Login or register to post replies.

mass spectrometry based lipidomics  are hydrophobic or amphipathic small molecules which include fats, waxes, sterols, fat-soluble vitamins (such as vitamins A, D, E and K), monoglycerides, diglycerides and phospholipids. The crucial role of lipids in biological physiology is evident not only in energy storage and structural components of cellular membranes, but also in signal transduction, membrane trafficking and morphogenesis.

Login or register to post replies.

Sandra_story's picture
Replies 12
Last reply 10/16/2016 - 10:12am

Hello and thank you to this forum for the all the information that I have took in.

This is our story and I apologize for any spelling mistakes and or lack of proper writing technics.

About 8 months ago my mom had got what we all thought was a really bad cold/flu. No one was sure including her doctor. At this time she had what would be considered normal flu/cold symptoms. This issue was that this never seamed to go away. Mostly her upper tract symptoms like abnormal amount of mucous and or saliva that was present. During this time until about a month ago she a seen her gp over 14 times always going through the same thing as the gp insisting that she had some sort of cold or sinus infection and mostly dismissing any concerns my mom had. My mom had to be overly proactive with her gp in stressing that she felt something more was going on. Too make this part of the story a bit shorter, about a month a half ago she noticed her lymph node on the left side of her neck was swollen. A clinc doctor was concerned and ordered a ultrasound. After that a cat scan was preformed and results came back as highly likely that there was some sort of cancer. A biopsy was preformed around a month and a half ago. We waited a week for the results. During this time of wating my beloved grandfather and my moms dad had passed away at the age of 97. A few days after his memorial we a learned the results from the biopsy. Well it came back back as Melanoma in her lymph node on her neck. As we all know and can appreciate that this news came as shock and  to say very hard to deal with. At this point In time my mom had been losing significant amount of body wieght, about 20 lb over the course of the month and had been noticing her desire to eat decress. She had was having a harder time swallowing food and a that with the lack of desire to eat. After the biopsy results we had more wating to meet with the oncologist in our area (Ottawa, Canada) We were lucky to get a Melanoma specialist. Here is a bit of the report after the first meeting. Again I'm sorry if this post is too long.

the following is from the oncologist report:

Thank you kindly for referring this very nice 63-year-old lady regarding her metastatic melanoma. She is well know to yourself and came along with a very caring and supportive family.


She has been generally healthy all her life. She is fair active, but had no other risk factors for melanoma in terms of exposure or family history. She first developed a lesion over her upper back in 2003; that was excised and she underwent negative sentinel node sampling with no adjuvant treatment felt required.

she has been under regular dermatological surveillance all along. There has been no suspicious or recurrent lesions.

However, she noted a lump in her left side neck at the jugulodigastric area a couple of months ago. It has been increasing rapidly in size, even since her recent CT scan. She had a consult booked with ENT service shortly. 

However, her health has been health has been decling with about 27lb of wieght loss in the last couple months. This seams to be due to increasing digestive complaints, having marked dysphasia for solids and thicker fluids. 

(I will now just summarize in my own words as to keep this short , although I know this is too long of a post)

They are clearly concerned for my mom health. The oncologist sent out to review for BRAF MUTATIONS as of today no results are in.

we had a gi tract endoscopy which revealed no tumors in the tract but a a closing of her tract and upper air way due to a lesion or tumor behind her tract.

She is on Iv hydration and also had a feeding peg put in. Wieght seamed to stabilized after this. 

Ct and bone scan have been done along with MRI.

we met with our oncogist today for the second time today. The tumor on her neck has been growing and she has been having more difficulty with shortness of breath and saliva build up due to her blockage of her gi tract.

we were giving these options today and this is were I need the advice form the fourm.

option 1: Pembrolizumab alone ( can start in 4 days )

option 2: If BRAF mutation: dabrafenib + Trametinb (pills) We still don't know the results of the BRAF TEST

Study: Pembrolizumab + Tvec viruses injections [ this a randomized trail being conducted and would take at least two weeks to start with no gaurentee of getting the Tvec or placebo)

option 3: Nivolumab + ipilmumab. [ more toxic and need to be in good health ]  Doctor was on the fence for this option considering my moms current state.


So my question to all the wonderful people on this fourm. Are we headed down the right path. Are there things that we haven't considered that can be important. Treatments that aren't available in Canada but else were that can help? 

I want the best for my mom and love her more then anything. I wish I could portray this better in writing. i have also reached out the an alternative cancer clinic in Ottawa that works with naturopathic doctors and traditional we will see them on Wednesday.

Any advice will be so much appreciated and also I would like to put out there too all the forums family's and friends that have affected by this my best wishes and positive thoughts.  I hopefully Want to be in a position to offer advice instead of just taking.

thank you so much for taking the time to go through this post. You are all so much appreciated in taking time to help other and for that I will be ever grateful.



Login or register to post replies.

Aida Ballesteros's picture
Replies 2
Last reply 10/13/2016 - 12:37am
Replies by: jennunicorn

My dad was diagnosed with melanoma in situ last august. Today he told me he had something bothering him in his hade, just up his ear. since its sorrounded with hair he told he he hadnt noticed it until it started hurting. I just saw it today and i really dont know if its a pimpple or a mole. It feels bumped and it has like two little holes just where the hair grows, how can i know the difference???
Maybe im overeacting but who can blame us after this diagnosis??
Thank u!

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 10/12/2016 - 10:45pm
Replies by: jennunicorn

I'm second guessing some things tonight or overthinking maybe but for stage 1a .40 thick clarks level 2 no ulceration.. should I have had a SNLB? All I had was a WLE. Just wondering. 

Login or register to post replies.

stephlovins621's picture
Replies 3
Last reply 10/13/2016 - 9:55pm

Back in 2013, I noticed a mole on the left upper side of my back. Being an ignorant fool, I disregarded the fact that it was growing and continuing to look suspicious up until July of 2016 when I finally had it removed. The look on the dermatologist's face said it all, and being a nurse myself I knew ultimately what I was up against. Needless to say, she removed the entire mole for good measure and confirmed that it was in fact melanoma. 

I'm currently 29 years old with a 6 month old baby girl so hearing this sent me into a full blown panic. I felt such anger towards myself for feeling invisible to sickness; I should know that in my line of work, I see people of different ailments at different ages every day! Why didn't I get this taken care of earlier? 2016 blessed me with my daughter, but now is the year I'm reminded of how health isn't something to take for granted. 

I met with the Melanoma Cancer Center at the University of Michigan in August and was told my mole was 0.81mm Breslow thickness, however the way the mole was presenting, they suggested performing a wide excision as well as a SLNB to rule out any lymph node involvement. Of course I was given a 5-6% chance that it spread so of couse I felt relieved! 

Guess luck wasn't on my side...the wide excision showed no traces of melanoma (which was to be expected) however the SLNB showed that THREE nodes in my left axillary lit up and had 1% of melanoma. If it had been a 1% spread to one lymph node, they said they wouldn't have given much thought to it, but the fact that three nodes lit up changed the treatment plan. Again, I felt like a fool thinking "of course it'll come back negative and all I'll need to do is skin checks for the rest of my life! No big deal!"

I'm awaiting the call to schedule my CLND to see what exactly we're dealing with. I'm not going to sugar coat it--I'm terrified. Regardless of the results of the CLND, they're referring me for further treatment where they'll suggest either Interferon or "waiting it out". I'm trying my best to stay off the internet, it only makes me more fearful, but it's the planner in me that wants to be two steps ahead already prepared. It's scary to think about cancer cells potentially floating around, having absolutely no control over them. I pray that perhaps the 1% is on my side? To give me some glimmer of hope? 

Regardless, my heart and prayers go out to the victims of melanoma fighting the good fight. I thank you for your time in reading my message and please know that even though we have never met, I'm thinking of you and praying for you. I'm thankful for this site to use as both a resource as well as a support system and I'm thankful for any tips or advice from you all :) 



Login or register to post replies.

hutch562's picture
Replies 5
Last reply 10/13/2016 - 2:48pm

My husband was diagnosed with stage 2a malanoma on back.  Sentinel lymphnode positive and two other lymphnodes are negative. Finding in sintinel was a 1.5 millimeter and is postive for extracapsular extension.

  Met with a sugical oncologist and he reccommends a radical auxillary lymph node disseciton after Ct and Cat scan are done.  He feels the scans will be fine.  I have seen research out there that advices againt a radical dissection as it does not improve odds but talking to this Dr and a Oncologist specialist at Johns Hopkins feel not enough evidence is out there to support not doing a radical dissection.  Can anyone give me any advice.  And what treatmen for the melanoma should we expect after the dissection?  I want to treat this smart and aggressively.  My husaband is in great health and is only 53.  Would like to see grandchildren one day.  I apprecieate any infor any one can give us.  I am scared and trying to stay strong for him.



LIsa Hutchison

Login or register to post replies.

snow white's picture
Replies 3
Last reply 10/13/2016 - 2:48pm

Just a quick update.  They have postponed the surgery for today.  They are treating him with Decadron (steroid) to see if they can get the swelling to come down without surgery.  He is still unable to walk or move much.  He is so AGGITATED, holy cow!!!  He is talking very loud, a bit confused, and more frustrated than I have ever seen him.  They are doing a 2 hour MRI on him today, from head down to shoulders, also bringing in PT to evaluate.

Whew....another day on the Roller Coaster.  Thank you all for your kind words, it means more than you know.



Login or register to post replies.

Just go to:

Helps melanoma patients and families and raises awareness too!

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 10/12/2016 - 10:12am

Hi, I have just had a (quoting my family doctor) "scary looking thing" of a mole cut from my left labia majora. I understand this is a forum for melanoma patients and I have not been diagnosed with melanoma yet so I hope this is not inappropriate to post but I figure that you may be able to help me interpret what my doctor has told me so far.

first of all, im 18years old (female obviously) and suffer some anxiety/panic attacks so this is experience has been quite uncomfortable. I have had this mole on my left Labia majora since as long as I can remember - possibly since birth. I first brought it to the attention of my mum I think when I was around 8 years old. Naturally, she thought we should get it looked at asap so took me to one of those medical centres because you get in straight away no appointment needed (a bit like supermarket medicine I have come to think). I distinctly remember the doctor (who was a young girl probably not older than 28 or so) saying it was a blood blister that would probably go away. Even at 8 years old I think I knew it wasn't but didn't give it much more thought till my teens. Because of the awkwardness of its location I didn't bring it up with anyone again, until 2 or so months ago when I noticed it has POSSSIBLY gotten the slightest bit bigger. I decided to make an appointment with my doctor to get it out, which to be honest was mostly because I thought it was embarrassing to have (and I had not at all considered melanoma nor knew anything much about it). knowing I wanted it to be taken seriously enough that he would remove it, I told the doctor it has definitely gotten a little bigger (this is the first time he's known about it). He took a punch biopsy, two stitches later, sent off the piece and the pathology test came back benign though I didn't read the exact report. after u had the two stitches out I went back and he told me I could either leave it or remove it, but that the nature of the mole was between the two layers, the epidermis and the dermis (or somewhat within both I'm not sure of his exact words) and that it would grow wider. I think he said something about that aesthetically I would want it removed (and I already do so said go ahead and take it out). He took a biggish chunk and gave me six stitches, and sent that off for another pathology test. I went back yesterday to get the stitches out and the conversation went as follows: 

"I've got good news and bad news for you, good news is that I got it all out, bad news is they want a second opinion on the pathology test". I asked him what would happen if it came back as melanoma and he said "oh well we'll deal with that when we come to it". This freaked me out but I kept my cool until I got home and actually read the pathology report, which he gave me this time. 

This is what it says exactly: 

"clinical notes: left labia lesion, suture marks lateral end of leaion. Wider excision of s16/150481. 

Macroscopic examination: the specimen consists of an ellipse of skin 18x8x5mm beating a brown macular 9x7mm. A sature is present at one poor designated as 12oclock. 

Microsopic examination: the sections of the previous biopsy were reviewed and the findings confirmed. This re-excision specimen shows central dermal scarring and mild inflammation in keeping with The previous biopsy. There is an overlying mild increase in junctional melanocytic activity throughout, with minimal atypia. there is no pagetoid epidermal spread or any other features of malignancy. These changes come within 1.0 mm of each radial margin. 

The possibility of an atypical vulver naevus was considered but the changes appear reactive and Insufficient  for this diagnosis. However, in view of the patients age and if the site of the lesion, further opinion from RPAT [this is my country's major/best hospital / melanoma clinic I have sinced researched and realised] would be advisable. 

The sections have also been examined by other pathologists in the group, who agree with these findings."

ok so, I have two major concerns with this.

1. The mole being 9x7 mm which is beyond the 6mm margin designated for the ABCDE rule (given the nature of the skin at the site it definitely did not appear this big to me so this is a bit of a shock)

2. Now this is the major one playing on my mind. If my doctor did in fact "get it all out" (his words, not the pathologists as far as I can tell in the report?) then what is the purpose of the second opinion they are advising??? Since, from what I gather, they seem to think the mole is ok, I'm GUESSING if they were incorrect,  it couldn't be worse than stage 1 .. Or am I wrong to assume that they couldn't completely stuff up and that it potentially could be worse than stage 1 ?? (Please note what my doctor originally said about the layers epidermis and dermis)..  Ok so IF it is pre cancerous or cancerous and they discover that in the second option at the major hospital pathology clinic, then what does that mean for me ? If it is truly all out what exactly is the purpose of the second opionion? Could this imply that it may have spread beyond the site to lymph nodes if it was intact not a benign mole, hence the need for the second opionion? 

Or, as my mum is trying to convince me, is the second opion merely to confirm that it is being , because if it wasn't they would merely like to have on my medical record that I had a pre cancerous or cancerous mole removed and basically warn me to keep an eye out for other body moles...  I will also note, as my mum thinks, my family doctor is the type to 'sensationalise' things..

I might also mention that I will be waiting 2-3 weeks for the results of this second opionion, and that over these 2-3 weeks I have some very  important high school exams, and all I can think about is that damn second opinion and what that actually means. 

Thank you so much for any information/ interpretation you might have. 

Login or register to post replies.