New Here - Brand New Melanoma Diagnosis

[amy32389]

I had a mole on my leg biopsied about a week ago and got the call from my dermatologist yesterday that it is indeed melanoma. I'm 29 with a husband, a two year old and a nine month old so it was definitely a hit. My pathology results have been sent to an oncologist and I'm awaiting a phone call to schedule whatever the next step is. Though I don't have many details (getting pathology report this afternoon) I do know that the depth is at 1.0 mm. Basically just looking to connect with someone who has been through this or has advice on what to expect.

[ttjeanious]

Hi Amy (guessing from your profile),

First, I would say try not to let yourself be consumed with all the what ifs. I was 28 when I was diagnosed 9 years ago. Mine was on my left leg, behind the knee and was 1.25mm. I went through a wide excision which you will most likely have to have. Depending on some other factors like mitotic rate (that is science speak for how aggressively the cells are dividing), and whether the mole was ulcerated (not necessarily something you can tell just by looking at it), but they may (and I would say should) decide to do a sentinel node biopsy which sounds scary but really is a minimally invasive procedure where they will inject dye at about the point of your mole and see which lymph node it travels to. Then they will remove that lymph node and test it for melanoma. In my case, the melanoma had spread to that node so they had to remove the entire lymph basin in my left groin. There was no additional melanoma found in those nodes though. Because of the spread I went through a month of a chemo-similar treatment, and have been getting dermatologist checks every 6 months since then. It was definitely tough, but, end result is I am now 37, something that seemed uncertain back when I was diagnosed. And, since that time, they have made a lot of strides in treatment options and preventative care.

Ask your provider/hospital if they have any support groups. Clearly, you have us here, but there is something special about connecting in person with other people, particularly other young people going through similar experiences as you. I never saw myself as a support group person, but I can say they definitely pulled me through the anxiety and the grief that I was feeling at the time.

Please feel free to reach out if you want to talk, now or in the future. My personal email is ttjeanious at gmail.com (spelled out so it doesn't get picked up by bots, use the @ symbol when sending...lol).

Sending you love and light,

Terisa

[Ch256706]

Hi,

I just turned 30 when diagnosed. My mole was .6 in depth, so my doctors said the sentinel node biopsy was optional. I chose to do the sentinel node biopsy even though there was only a 5% chance it spread. Sure enough it did so I’m currently doing one year of immunotherapy. My oncologist also said the treatment was up to me and I really pushed for it. My melanoma specialist thinks my recent pregnancy had something to do with this mole turning to melanoma. It is devastating news to hear and I still can’t believe it. I have a one year old and need to be here for him! Here if you have any questions about upcoming events.

[VivaciousMo in reply to Ch256706]

Hi I'm so glad you are doing the immunotherapy. There have been such great results with it! Plus you have a fantastic reason to be alive: your son! That will keep you strong and keep you going. I wish I had done the sentinel biopsy right away when I had my mole removed because mine had also spread there. Thanks for telling your story. Wishing you lots of health and a full life with your family!

Moriah

[Ch256706 in reply to VivaciousMo]

Hi Moriah!

The immunotherapy is going incredibly well and I’m so glad I did it. When were you first diagnosed and when did you find out it spread to the lymph nodes? Did you do any treatment?

[VivaciousMo in reply to Ch256706]

Hi, so happy to hear it is going well! That is great! I had the initial mole removed in summer 2015 and they said it wasn't event a stage 1 so they didn't go after the lymphnode at that time. In July 2017 I found a bump in my groin and had that biopsied, then a total lymphnode resection in that area when the one lymphnode tested positive for melanoma. I did 4 immunotherapy treatments (1 yervoy, 3 nivolumab) but had to stop due to my liver getting too hyped up (immuno hepatitis, I believe). However, my oncologist said that even a few immunotherapy treatments can really work! So I'm glad it is going well for you!! Currently, I'm working on my own immune system by reducing stress, seeking support, eating better, sleeping more... you know, the basics that we all forget. I believe that our bodies can fight melanoma if we give them the tools to do so. Praying for your health and no more recurrences!

[Leechagirl]

Amy,

I know you are scared to death and who wouldn't be with any cancer diagnosis. I'm going to give you the best advice that my dermatologist gave me and that was stay away the internet. I am so glad that I did. I actually was in the middle of selling my house, starting a new job, and packing to move so I had a lot to distract me. I'm so very thankful for that or I would have been on the internet looking at the worst case scenarios.

My dermatologist scared me to death, but my oncologist talked me off the ledge. Get all of your facts about your case. I wish you the best.

I'm here for anything.

[amy32389]

Hi everyone!

First, thank you all for the advice and well wishes! The mole they removed was below and to the left of my left knee just a bit. I'm being told that based on the Breslow's Depth, etc. they will be doing a wide excision and the lymph node biopsy (behind left knee) at the same time, though we don't have a date set for that. Right now the path report showed 1.0 mm depth with Clark IV so they want to start us off just directly with the lymph node biopsy to be on the safe side. I'm being told that I have "small cell (nevoid)" melanoma (superficial spreading) though I haven't been able to figure out much on what that actually means. I'm sure once I actually meet with the oncologist they will have more answers for me.

In general I'm in good spirits and have a positive outlook. I'm not by nature a worrier so I tend to be pretty good with bad news. I take it as it comes and a step at a time, which is all we can really do at this point anyway!

I have a husband, a two year old son and a nine month old daughter, just bought a new house, etc. so I definitely have plenty to distract me int he meantime!

I'd love to connect with any of y'all also so I've added my email address below for anyone who would like to

amynichols89 at gmail.com (taking Terisa's trick lol)

Again, thanks again for all the advice!!

[VivaciousMo]

Hi Amy, I'm wishing you the best results! Can I suggest getting a counselor or a support group early on? I waited a few years and I think it caused me a lot of anxiety during that time that I could have begun to treat more effectively if I had reached out for support earlier. I wanted to "be strong" and just deal with it, but I think being strong is knowing when others can help and so many people want to help!

Take care and feel free to contact me whenever. I'm 26 and I hope to have a couple of wonderful kids in a few years like you do! My email is [e-mail].

[Haileyzeil]

Hi there,

Reading these posts gives me dejavu as though I wrote many of them myself. I had my first primary when my daughter was 2 and I was 27. They found another melanoma on my left leg behind and to the right of my knee one year later. I then had a third primary last year when my second baby (my son) turned two on my left thigh. The first was stage 1b second stage 1? And third was 2c. I am constantly having biopsies for my hundreds of new and evolving spots and have had at least 50 spots resected for severe abnormality, or basal cell🤦🏼‍♀️.

Do any of you live in southern ca or more specifically Orange County and know of a melanoma support group or something along those lines? I have managed my anxiety by remembering who Jesus is and just asking for peace, but would love to chat with fellow young moms who have the same daily struggles.

In any case enjoy your families and stay positive!!

[Hidden in reply to Haileyzeil]

We go to WeSpark in Sherman Oaks, and we live in Van Nuys. Lots of support groups there!