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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Savymoo23's picture
Replies 11
Last reply 8/18/2018 - 11:20am

So I got a call from my surgeon tonight and he said that my biopsy came back under my arm as negative and that was really good news. I know it’s good news but that’s basically all he said and hung up. I’m kind of at a loss? Is this the end? Do I not need more testing? I just feel like I don’t have all the answers? Can it still spread with a negative lymph node biopsy? Thanks guys 

Savannah Price

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nicolec's picture
Replies 3
Last reply 8/17/2018 - 5:44pm
Replies by: Anonymous, nicolec, Bubbles

You may remember awhile back I questioned a complete removal of my lymph nodes (I'm 3a). I had a lymph node removed from both sides of my groin during my SLNB that had melanoma. I went to Mayo last month for their opinion, and they recommended not removing lymph nodes. They did recommend that I have an ultrasound of my lymph nodes in my groin area every 3 months for 3 years. I had my first one yesterday.

I got the results of the ultrasound today (I truely thought it was just a baseline) but one of my lymph nodes may be "reactive or involved with metastatic disease." They might recommend an ultrasound guided bioposy or FNA (fine needle aspiration). My onocologist is on vacation until next week, so I don't know what his plan will be.

If melanoma is in another node, does my stage change? Does this make everything a lot worse?

I'm on a year of Opdivo. I have had 2 rounds(1st dose was the 2 week dose and dose on Monday was the monthly dose).

I'm trying to stay positive throuhgout this journey and I know many people have it worse. I'm thankful I have treatment options and so far side effects to the Opdivo have been minimal. But sometimes, like today, I find it difficult. Maybe this isn't that big of a deal-but soemtimes it seems like continuious bad news, and just when I think I'm holding it all together, BAM.

Nicole C
3a

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melanomamafia's picture
Replies 7
Last reply 8/29/2018 - 5:19pm

Hello!

I'm new to this world of Melanoma. I work in healthcare and have for years. I have a tendency to research and read alot of studies because I think they are SO INCREDIBLY valuable and what some have scoffed at have turned into some of the biggest advancements in healthcare today.

That being said...

I found a mole that was new. Started out dark and then morphed into a pink/brown color. Seemed to get wider pretty quickly. After 5 weeks, I went and had a punch biopsy done. My PCP didn't think it was melanoma but I have a personal history of squamous cell skin cancer, as does almost every member of my family. Possibly some melanoma on my dad's side but my mom wasn't sure. Anyways, pathology came back as MM Clark's level II and depth of 0.38 mm. No ulcercation or mitosis. Margins are indeterminate and TILs are non-brisk. It is epitheliod and spindle celled. 

I know this is a pretty good report considering what it could have said. And I don't want to borrow trouble. But even with the mitosis of 0, I can't help but worry about how quickly this came and I know for a fact that it was new because of it's presentation. I have had some pretty weird symptoms that I mentioned at that same appointment before we even contemplated melanoma. He thought it was nothing and I thought it was nothing too. Those symptoms are hot flashes, being sweaty alot and then a short time later, petechial rashes that come and go, and aching in my right armpit that travels down my arm. I'm sure it's not related but I can't help but go there in my mind. What if I have mets and I don't know it? What if this is a secondary tumor and I missed the primary that is somewhere else? Ugh. This diagnosis all of a sudden turns you into a crazy person.

Here's my question:

I want to insist on a SLNB for my own peace of mind. My research says that the benefits outweigh the risks and if I'm willing it should be doable. Anyone ever insisted? Anyone ever gone from a 'mere' stage 1 to a stage 3 from insisting on SLNB when it wasnt indicated?

Please don't be harsh with me or shame me. My family history and the possiblity of 5-10% metastasis at some point is enough to make me be willing to sacrifice a chicken to put my mind at ease if needed. So what's a node or two?

Thank you for your replies. <3

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MMH's picture
Replies 3
Last reply 8/19/2018 - 12:40pm
Replies by: UBContributor, MMH, MarkR

I was recently diagnosed as Stage 1 spitzoid melanoma.  I have been advised by my doctors to keep an eye on my lymph nodes, particularly the ones in my right armpit.  Perhaps it is psychosomatic, but I have random pains in both armpits, but feel no obvious lumps or bumps.  Is there a better way to monitor for this, or signs to look out for that could help?   

MMH

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AN8's picture
Replies 6
Last reply 8/17/2018 - 8:43am

Any suggestions for sun protective clothing? I see various name brands such as high end Columbia and Patagonia ($$$) to Walmart brand called Vapor.  

As far as sunscreen, I use Blue Lizard and Mineral Republic (both available at Walmart). They are similar to applying zinc oxide ointment...really white and thickish, but you don't smell like sunscreen which is nice when you apply it every day.    Any other suggestions that don't break the bank?

Lastly, those with outdoor hobbies (mine and my daughter's - coaching competitive softball), do you give it up?  Continue with precaution?  Daughter is at increased risk because of me and the fact that she had a benign atypical spitzoid removed back in May. It will probably be the smart move to retire for me - alot of time in the sun on the weekends.  For her??  What is your advice to your kids who have not had melanoma, but share the same activities as you and look where you are?? Risk you life to live or don't live your life to save it?  Little dramatic but doesn't that sometimes feel like the question?

 

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Kfred's picture
Replies 9
Last reply 8/16/2018 - 9:57pm

My husbands surgey is Scheduled for in the morning 8/16/2018.

There are no surgical melanoma specialists in my area. Because the mass is fairly large, at least 3.45 mm and staging is at Least Pt3a, They feel it has to come out now and we should not wait to search for a specialist. I trust this surgeon but am wondering if we are making the right choice.

The pathology report came in this Monday. Dermotolgist had us in the surgeons office yesturday and surgey tomorrow. I like the aggressive approach they are taking, but it scares the hell out of me that they are moving that fast. Any suggestions? or at least positive thoughts for me!

Thanks,

Karen


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Bubbles's picture
Replies 15
Last reply 8/19/2018 - 8:25pm

Hey guys,

Hope you are all having as good a day as possible in your worlds.  Don't waste your time on this post if you are in a serious mood looking for real live melanoma answers.  However, if you want a little mental puzzle and break from that, while still learning about melanoma world, these may be for you!  I think neither of these reports are particularly useful in immediate outcomes for melanoma patients, but through them it may be affirming to:

1.  Know that melanoma research of all sorts continues.

2.  Weirdo's like myself search it out, review and post it.

3.  And while I don't think happiness will cure our conditions, it never hurts to smile!!!

For what it's worth:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/08/research-that-makes-you-scratch-your.html

Wishing you all my best!  C

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Savymoo23's picture
Replies 9
Last reply 8/15/2018 - 11:14pm

So my husband just told me this, when they removed some of my lymph nodes they were black. My surgeon said he’d never seen that before and wasn’t sure what it meant. Have any of you heard of this?? I tried looking it up and couldn’t find anything related. I thought I was very strange. 

Savannah Price

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Finn's picture
Replies 10
Last reply 8/15/2018 - 5:51pm

Just found out a week ago that I have Melanoma and I have been trying to sort out a referral to a surgical oncologist since through my HMO. I can't stand the waiting and also the fact that the medical group within my HMO does not actually have any suitable surgeons, so I will inevitably have to appeal their referral and hope they allow me to go out of network.

I have the pathology report from my dermatologist who did a shave biopsy of the mass. I have had this lump on my arm for probably 2-3 years and so I am quite concerned by the diagnosis. I had the lump looked at a couple years back and the dermotologist then thought it was a seborrheic keratosis. Since we thought it was benign, I left it alone. Fast forward to now, I saw another dermatologist and he also thought it was a SK, but since I had insurance we decided to have it removed and biopsied as it would be covered. 

The pathology report shows a nodular malignant melanoma with a Breslow thickness of at least 1.1mm, a mitotic rate of 2/mm2, and staging of at least pT2a. The margins were not clean and I have to see a surgeon to have the entire mass removed as well as have sentinel lymph node biopsy.

I am trying to be as practical as I can about everything and keep a one step at a time head on, but I am concerned as this lump has been on my arm for years misdiagnosed as a benign mass. Now I find out it is a melanoma and the most aggressive form. I worry it has already spread and the waiting for a referral is horribly frustrating when I just want the damn thing off my arm now.

I think for the most part I just needed to vent to people who can understand my plight. 

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Coragirl's picture
Replies 8
Last reply 8/15/2018 - 3:44pm

Hello, after too many stressful, delayed appointments at MDA my husband and I are looking into other options for his care.willing to travel but would prefer to be close to home. We have 4 kids and my husband travels for work as well. Can anyone recommend an oncologist in the Dallas Fort Worth area? I know of two, I would just appreciate personal experience of anybody has any. Thank you so much.

Amie Taylor

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Rncab218's picture
Replies 14
Last reply 8/19/2018 - 1:01pm

Hi,

posted a month ago when I was diagnosed with a local recurrence of melanome 9 years after initial diagnosis.  Had unknown primary, two large lymph nodes removed.  Did leukine for ten months, no further treatment.  Now have had local recurrence, left arm and still cannot decide if I should do Nivo, tested BRAF negative.  Spoke with three oncologists at two major center in NY.  One leans toward watch and wait with scans every six months, one recommends nivo for one year, the other one gave me information but not leaning either way, its my decision.  So, I ask, any of you have done this treatment?  How tolerable is it?  Any of the major possible side effects occur?  Have you remained disease free?  Thank you so much, I need to make this decision soon as its already been two months sicne my recurrence.

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/30/2018 - 2:43pm
Replies by: MMH, cancersnewnormal, Zap_

I was recently diagnosed with Stage 1 melanoma, atypical spitzoid.  The breslow depth was .6mm.  I am hoping to find others with Spitzoid Melanoma to better understand the behavior/prognosis/treatment for this specific type, since it sounds quite rare. 

I had a wide excision about ten days ago and the margins came back clear, but they did not do a SLNB and I worry that I should be pushing for this. 

Any advice would be apprecaited.  Thank you. 

 

 

MMH

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Savymoo23's picture
Replies 7
Last reply 8/15/2018 - 2:17pm

Hello everyone, 

Just wanted to update y’all on my surgery that happened yesterday. They first started my injections of some sort of radiation stuff around my biopsy site to get a good look and see where the cancer has spread (lymph node wise). That took about an hour and a half. They found that the lymph nodes under my right arm pit were lighting up pretty bright in the imaging. 

They then look me upstairs for pre-op. They got my all jacked  up on drugs and I don’t even remember going into the OR room at that point. They did my SNB while I was under, then flipped me and took a good amount out of my back. I woke up feeling very sick and I threw up once and then got some more anti nausea meds. 

I am now at home recovering for the week. Having a hard time sleeping just on one side because it’s hurting my hips and back. 

Anywho, just wanted to keep y’all updated. I’ll have more answers on weather or not that lymph node is positive for cancer hopefully by the end of the week. 

P.S: I had a question? When do you get your staging? I have no idea what stage I am. Just curious. Thanks guys! 

Savannah Price

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Replies by: Kfred, melanomamafia, Anonymous

Milagnant Melanoma

Histologic Type: Nodular

Thickness: AT LEAST 3.42 mm

Clarks Level:AT LEAST IV

Growth Phase:Vertical

Ulceration: Not Identified

Mitotic Rate-2-3/mm

Tumor  Infiltrating lymphosites-Non Brisk

Pathologic Stage- AT LEAST pT3a

Margins- extends to involve the base of the biopsy

Breslow depth -pathologic stage may require revision on the excision

all other catagories are listed as Not Identified.

Microscopic Descrition: Atypical melonocyctes are present within the epidermis and papillary and reticular dermis


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Anonymous's picture
Anonymous
Replies 6
Last reply 8/14/2018 - 9:32am
Replies by: lkb, Anonymous, SABKLYN, Edwin, KellyH, Rocco

First post here and, obviously, nervous. Otherwise I wouldn’t be here. I guess I’m just looking for support. Or, info. 

I have had a mole on my face for years. However, in the last several weeks, it has gotten larger. Well, more raised. It has always been slightly raised, but I noticed a few weeks back that it felt firmer and, well, taller. I didn’t think much of it, though. However, yesterday, I noticed it was darker and was leaking what seemed like serous fluid. Today, it is larger and has bled. It’s taken on a look of being almost a blood blister? It’s nuch darker and the area surrounding it is inflamed. I’ve not experienced any trauma to the area that I’m aware of. It’s painful and the pain radiates around my eye and I’ve had a headache on and off for days. I’m also nauseous and just feel icky and achy. Although, that could be from anything. 

I am an adult, but my family thinks I’m crazy for even thinking this is abnormal. When I mentioned seeing a doctor, they just said that I was overreacting. I called the doctor anyway and they were dismissive saying I likely scratched it. But, do you know how many times I’ve purposely messed with it in years past? It’s never looked like this or oozed, bled, or become raised. Do I need to be concerned? I tend to be a bit obsessive, I admit. But, something isn’t right. Can a melanoma happen this fast?

I am fair skinned with light eyes. I don’t know what a mole is or how it differs from a freckle. I have plenty of both, but not on my face. I’ve had serious sun burns before, but not recently. No history of melanoma in my family, I don’t think. But, my sun loving mother has has precancerous lesions and my maternal grandfather had some form of skin cancer. I don’t know if that matters...

Just looking for support. 

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