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Newly Diagnosed

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Newly Diagnosed

Posted By
mrbill16323
9/9/2020 4:51pm
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Replies: 4

Hello all. Thankful for this place we discovered today. I've been to my dermatologist just about every year as I am dark-skinned caucasian any have had many mole growths and age spots over the years, but none have been cancer. Three weeks ago I hit my hit getting out of a golf cart and my baseball cap buttom squished into the crown of my scalp and bled a lot. AFter a few days the scab did not look "normal" and still had bleeding. My wife and I jumped on it, and luckily was able to see a dermatologist (not my regular dr) quickly. He performed a crown shave biopsy. A week later got this test result: malignant melanoma, deep and peripheral margin positive. Histologic type: superficial spreading melanoma. Maxiumi Tumor (Breslow) Thickness : 2.05 mm. Macroscopic Satellite Nodule: not identified. Ulceration: present. Anatomic (Clark) Level: IV (melanoma invades reticular dermis. Mitotic Rate: 4 mitoses per mm2. Microsatillite(s): not identified. Lymphovascular invations: not identified. Neurotropism: not identified. Tumor-Infiltrating Lymphocytes: present, nonbrisk. Tumor Regiossion: Not identified. Margins: Peripheral Margins: involved by invasive melanoma. Deep Margin: involved by invasive melanoma. Pathologic Stage Classification (pTNM, AJCC 8th Edition): Primary Tumor (pT: pT3b)

Sadly, we saw the test result before any one from the hospital or the doctor responded to us because it was Labor Day weekend. Dermatologist Doctor apologized for that. On Tuesday Sept 8 he said I could go into surgery the in two days for removal, but rather he recommended that I wait for the hospital's Melanoma multi discipline board to meet Sept 16 to review my case and recommend treatment. So I agreed to that, not knowing or understanding much about the test results other than I'm in trouble. The doctor did not look over the rest of my body, just did the biopsy, and that does concern me. To be fair, my greatest concern was the rapidly growing (within days) ulcer on the top of my head! Doc says nurse coordiantor is supposed to call us to explain further what will happen next, but I called to talk to her and she said she has nothing to tell me and doctor will call me on Friday. This is concerning. I feel like I'm floating in limbo. Is this a normal course?

mrbill16323 - (9/9/2020 - 4:53pm)

Sorry, I hit my head!

Bubbles - (9/9/2020 - 5:59pm)

I am sorry you have to be here, Bill, but glad you found this forum as it is rich in knowledge and supportive peeps. As harrowing and horrifying as it is to hear the words malignant melanoma attached to your name, you have been proactive and it is not the time to panic. I am glad you are waiting for the melanoma team to evaluate your situation before you take action. Having a melanoma specialist or at least an oncologist who is familiar with and has taken care of melanoma peeps can make a real difference in patient outcomes. Roughly, you can expect that you will be recommended to have a WLE (wide local excision) in order to get clear margins around your lesion. AT THE SAME TIME - you should have SLN (sentinel lymph nodes) tracked and biopsied. This needs to be done in conjunction with the WLE. If it is postponed, the lymph channels are disrupted by the WLE and the sentinel node(s) cannot accurately be found. From what I understand of your report, you are currently probably Stage IIb. Here is a good site that breaks all the stages down: https://www.aimatmelanoma.org/stages-of-melanoma/stage-ii-melanoma/ The reason I (and I am nobody!!!) place you as IIb is due to the "ulceration". However, I would be sure to talk to your doc about the fact that you cut your scalp and make sure that what they see really is ulceration, not laceration! If your sentinel nodes are positive for melanoma, that would make you Stage III and systemic treatment would be indicated. But, breathe and pass that bridge only when and if you need to.

One other point. For melanoma on say your leg or your back. Usually the sentinel nodes that would be removed are usually only 1-3 nodes. With the head and neck, because of the proliferation of nodes and lymph channels in those areas, things can be a bit more extensive.

Melanoma sucks great big green hairy stinky wizard balls!!! But, we've come a long way, baby. I was first diagnosed with Stage IIIb melanoma in 2003. Given that there were no treatments available at that time, I advanced to Stage IV with brain and lung mets in 2010. However, with current immunotherapy and surgery - I am still here and NED (no evidence of disease) for melanoma since 2013 with no further treatment. You can do this. Hang in there. I am sure others will chime in. I wish you my best. celeste

mrbill16323 - (9/9/2020 - 7:58pm)

Great info. Thank you so much! Fantastic that your health has recovered!

Treadlightly - (9/15/2020 - 12:09am)

Hi Mr. Bill,

I am sure your lesion was obscured by your hair, but were you able to see or feel any thing in the area of the bleeding before or after your original golf cart incident?

I had a similar thing happened to me. I found a brown stain on my heel where I thought I might have stepped in grease in my garage. I tried to remove it with a callous file, and it began bleeding immediately and I knew that was not normal, so I went to the doctor. Then...yada yada yada...my biopsy came back malignant melanoma.

The depth of your lesion pushes you into the stage 2 range at a minimum, but don’t be freaked out by that. Mine was almost 4 mm deep and I still wound up being stage 2A. However, I agree with the earlier comment that you should double-check that your biopsy doctor knew that you had a fresh laceration, and most-likely scabbing, from the golf cart incident. Even though mine had bled from the callus file, my biopsy results came back with no ulceration. But the time from my initial bleeding until my biopsy appointment was a good couple of weeks. I first had to schedule an appointment with my primary care doctor, who referred me to a dermatologist, and the dermatologist appointment was only a consult, so I had to schedule another dermatologist appointment for the actual biopsy.

As the previous response indicated you will need a SNLB and WLE as a first procedure. Hopefully the SNLB will come back negative and then you will be done with your treatment.

It is great that the board will review your case, but do not to let too much time pass before you get your SNLB/WLE. Early intervention is the best prevention of a more serious spreading of melanoma. You will find that you need to be your own best advocate for your care. Ask questions, and don’t be afraid to challenge your caregivers judgments, decisions, and recommendations. Always push them to get the fastest and best treatment possible.

By the way… I love the reference to Mr. Bill. It is very important to keep a positive attitude!

My case was in 2010, and I have been NED ever since my SNLB/WLE. You are going to be fine, but you’re in for a bit of a roller coaster ride. Buckle your seatbelt and get started on your road to recovery, and a healthy, long life.

Best of luck,
Mark