The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.
I’ve been reading a lot on here but decided to enter the conversation. I had a whirlwind Diagnosis. In Nov I had a skin check and nothing was exciting. In January I noticed a new nodule on my ear. It grew pretty quickly and I finally got into the doctor in mid February. The Derm said it was not likely to be anything but did a deep shave biopsy (first biopsy ever as a 31 M, so had no idea otherwise). Got a call 4 days later that it was aggressive nodular amelanotic (not pigmented) melanoma. Was rushed to appointments with oncologist and surgeon who does a ton of neck dissections. Had an MRI, CT, bloodwork and chest x-ray. All came back good. Had a WAE on March 12 with 4 nodes in the SLNB. Got the good news that they all came back negative. Officially I am in 2b now. However I’m really quite on edge. My pathology (below) indicates that I just about as high risk as possible. That in combination with the ear location is making me paranoid (and I’m told rightfully so). Anyone been through this? I know that it could be that nothing else happens but it just seems like a very high risk situation. I’m looking at a nivo clinical trial but may not qualify depending on when it reopens from COVID. Being stuck at home is making me stew more than I should be. I’m working with a counselor but it’s still hard to get over anxiety that has a legitimate source haha.
Mitotic rate -11
Depth – 3.5 (at least, I’m told it was 3.5 but I was told at least 3.5 with shave)
Ulceration – positive
Lympohvascular invasion – positive
Hi there, I am very sorry you have to deal with this crap. I remember, when I was diagnosed approx. 15 months ago. I am stage 3a ,since my 2 SLN had traces of melanoma cells.
Being an engineer, I probably run more calculations and read every published paper I could get my hands on. After a couple of weeks, Cox Regression Model, Hazard Ratio become familiar terms.
You also got some points in your favour: Despite ulceration and lymphovascular invasion, your nodes are clean and no cells have spread to the SLNs. Secondly, they were able to remove everything. Always think that your chances of getting to live to old age are higher (70% plus give or take) than getting beaten by this disease, statistically (there are worse places to be on the horrible scale) On top of that, medicine *Vaccines, Immunoth. and targeted treatments” are advancing as we speak and your odds are getting even better by the day.
The first couple of months after being diagnosed were the worst of my life and I am not the worrying type, but you will find that after a while, you will gradually be able to get your life back and worry about trivial stuff, which is a sign of feel normal for me these days:)
I wish you all the best and like all on this forum, we understand what you are going through. Others here, much more knowledgeable than me, will surely also give you some advice ,but I just wanted to explain my experiences, hoping that this might help.
The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.
The information on the forum 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.
The Melanoma Research Foundation (MRF) is leading the melanoma community to transform melanoma from one of the deadliest cancers to one of the most treatable through research. education and advocacy.
The Melanoma Research Foundation is a 501(c)(3) non-profit organization.
THE INFORMATION ON THIS WEBSITE IS FOR INFORMATION PURPOSES ONLY AND IS NOT A RECOMMENDATION OR ENDORSEMENT OF ANY DRUG, DEVICE OR TREATMENT OR THAT ANY PARTICULAR DRUG, DEVICE OR TREATMENT IS SAFE, APPROPRIATE OR EFFECTIVE FOR YOU. QUESTIONS REGARDING ANY DRUG, DEVICE OR TREATMENT SHOULD BE DIRECTED TO YOUR HEALTHCARE PROVIDER.