Diagnosed today and I am scared

Posted By
Ryan2240x
12/4/2018 1:10am
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Replies: 11

I was diagnosed with Melanoma earlier after having a shave biopsy done last Monday. 

 

I had this mole looked at by my primary around March or so when it had turned red suddenly. At the time i couldn't even recall if this was a mole that had always been there or not. My primary said that it just looked like it had been irritated and didn't need to come off, though she said she would remove it if I wanted her to. 

 

I said no because she didn't act like I needed to.

 

Fast foward to the other week and I hadn't been thinking about it much, but I noticed that the mole had turned to more of a brown color again, but had redness around it. 

 

I went to a dermatologist and they shaved it. I get the call today that I have Melanoma and it is invasive. 

I have to do a surgery now, which they are trying to schedule within the next two weeks and I am just very scared and feel like I am going to die. 

 

I do not know all the details of my pathology report, but they did say that based on what they sampled, it is showing that it is thin with no ulceration. 

 

I had a full body check today after I was diagnosed and she removed another mole which was much smaller, but she said it had some slight color variation, so I have to be anxious about that. 

 

Based on what I have said, am I pretty much doomed? I'm so upset that I can't think straight. I keep thinking about all of the things that I had planned, like marrying my girlfriend of four years, having kids, etc.

 

I am  35 year old male btw. 

Ryan 

I also want to say that the Nurse Practitioner who is working my case said that she sees these thin, non-ulcerated melanoma's get scooped up in surgery and then it's over with. I am really trying to be positive. 

Ryan 

Welcome Ryan.  Sorry you have joined the club, but rest assured you landed at the right place! We all understand you're scared, and that's normal with a cancer diagnosis.  We've all freaked out in our own ways over the same diagnosis. You are certainly not doomed. You will have a wide excision to make sure of clear margins , and probably never have to deal with this again. Please feel free to share the specifics of your lesion so you can get more detailed feedback from the incredible folks here. Everyone one here would probably tell you to stay off the internet about this diagnosis as the treatments are evolving fast these days.  For the better , for sure. Take solace that anything you want to know about what to expect can be learned here. But with a thin lesion,  the standard protocol is to get the wide excision next, which you already have scheduled. If you share your pathology report, there are great people here willing to walk you through all the things you may not understand. The people here have held my hand, and helped me navigate this journey. You're going to get cut a little bigger,  and be fine I'm sure.

Best of luck, and let us know how it goes!

Bob

We are one.

Thanks, Bob. I actually don’t have the pathology report, but I can ask for it. I guess I am so upset that I don’t even want to look at it.  

Can they actually know it’s thin with no ulceration based on a shave biopsy? I guess I am really freaking out, just knowing this thing actually turned red back in March or April.

Ryan 

I am sorry you are dealing with this, Ryan.  And yes, you are going to have to be your own best advocate to figure out what you have and what you need to do to take care of yourself.  In melanoma, color matters not.  While the conventional lesion is black and ugly, melanoma can be pink, flesh colored, or blueish.  Thin lesions are best (but you have to know the exact measurement of your lesion).  How thin it is, or isn't, matters in what happens in the end.  No, a shave biopsy was probably not the best move....but that is done now and can be dealt with.  Ulceration is a negative finding.  Given that your lesion was NOT is good news.  You will likely need to have a WLE (Wide local excision) where they will make sure they remove set margins around the lesion to ensure that the melanoma is removed and clear margins are attained.  You will need to consider whether the depth of your lesion necessitates a sentinel node biopsy.  Where they inject a marker to determine the direction of lymph flow from your initial lesion and which one or two nodes this drains to and then remove those nodes.  This would need to be done at the same time as the WLE.  If the WLE is done prior to the SLNB, the flow is disrupted by the surgery and is not valid.  However, if your lesion is very thin, SNLB may not be indicated.  

SO....get your path results.  There will be a great deal of support and intel form this board. 

Melanoma of any sort sucks great big green stinky hairy wizard balls!!!  Period.  BUT.....it is NOT necessarily a death sentence.  If your lesion is as thin as I suspect it is, the odds are in your favor that you need nothing more than a WLE and regular checkups with your derm.  However, if you need more...you can do that too.  There are effective treatments for melanoma now available.  I was diagnosed with a cutaneous lesion, but with a positive node, in 2003 at the age of 39.  And...I'm still here.

You may use the search bubble on my blog for more info if needed.  Check out posts here by Janner as she is our resident expert on local thin lesions...though your path report wil be needed for any of us to help much.  Hang tough.  Keep us posted.  Hope that helps.  Celeste

And if all the acronyms are driving you crazy....here is a thread on this forum that may help:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/abbreviations  

And, yes.  A sense of humor is crucial!!!  c

 

lkb - (12/4/2018 - 11:05am)

Ryan, you will hear from others here who initially thought/were told that the mole was harmless. Mine was under my hair and had probably been there for awhile before I found it--but I don't let myself spend too much time there. Better to focus on treatment. I'm glad you've been proactive by scheduling your surgery. This discussion board is an amazing resource, so you've taken another powerful step forward by being here. Keep us posted.

October 2017 primary scalp WLE; SLNB; partial neck dissection. July 2018 recurrence in neck. August 2018 second partial neck dissection. September 2018 started Nivo. December 2018 brain met + recurrence in neck.

 

MMH - (12/4/2018 - 11:44am)

Hi Ryan. Your story sounds similar to mine. My dermatologist (at Hopkins) said mine looked fine, we could watch it evolve. I pushed for removal, got the call that it was melanoma. Try to remain as calm as possible and focus on the fact that they told you it is thin and that you caught it. I know, easier said than done, but focus on the good news. Keep us posted.   

MMH

Hi Ryan,

Yes, this is scary stuff and I don't blame you if you feel a bit freaked out at the moment.

It's important to look on the positive side, and there is one for you: what they removed so far was thin and had no ulceration. If it's over a certain thickness, doctors will check for lymph node involvement as a precaution. This is done through a procedure called a sentinel lymph node biopsy.  

Right now a lot of stuff is up in the air for you and it's scary. Also, the waiting sucks. Best advice I can giave you is to stay off the internet because there's lots of even scarier sounding stuff out there that's out of date. If you have questions, come here and fire away.

I was also diagnosed this time of year so I feel your emotional pain.

My melanoma didn't manifest as a mole. I had what's called an unknown primary, which means I had no mole. It went straight to a lymph node. So, I was Stage III from the get-go. Yeah, melanoma is that much of an SOB. However, this was 8 years ago. Yes, EIGHT years. Do a search in the forum for "roll calls" where longer term survivors check in with their stories. You will be inspired. 

Hugs and prayers to you. You will get through this.

Stage III, Unknown Primary; 1 positive node in left axilla

Mac - (12/4/2018 - 10:05pm)

It sounds like you and I had a similar introduction to melanoma and similar initial reaction.  I had an ulcerated primary on my left arm. Insurance had kept me away from doc's and I hid it for a good while.  When they first said melanoma I thought I better get ready for the end.  It was a very few years ago that melanoma was a killer.  Now that I have been throw months of scans and surgeries and now Opdivo, I have calmed down.  There are times that I think about the bad possibilities and panic a bit.  BUT I'be had 5 months of very nice docs nurses, techs, advisors get me throw all of it. I have almost no pain, more like that discomfort and unpleasantness.  I have been reading this board for months, and just posted today.  Because, as much as I need reassurance, I have only an occurrence of all in cancer.  I've read on this board comments from folks d it a much tougher experience.  

Thank you for all of the posts. I spoke with the specialist today and he said that he rarely sees people have to come back for another surgery. He said mine is small. He said I am at Stage 1. Clark level 2. It is invasive, but superficial spreading.  I am still so scared though and of course now I have to wait on a biopsy result from the other mole they took off yesterday. 

Ryan 

I got the call today that the second mole they biopsied is also Melanoma, however it is even thinner than the first one. They are both on the same leg. One on the calf and the other one higher up, closer to my groin. I haven't looked at the path report on the new one, just been told it is smaller, has a mitotic rate of 0, no ulceration, etc. 

The report on the first one is Breslow thickness at 0.38 mm, no ulceration. Mitotic index o. 

They said they will take these both out on Monday. I am so scared though and just hopeful that these are both primary tumors. 

Ryan 

If they gave you a depth on the second one, it is a new primary and unrelated to the other.  Melanoma grows from the top down and a metastatic lesion would have totally different characteristics and a top-down depth wouldn't be included.