A woman with her face obscured is slowly surrounded by masses of darkness.

I Didn’t Know What Metastatic Melanoma Felt Like Until I Was Diagnosed

My biggest issue with being diagnosed with stage IV melanoma (believe me, it’s hard to pick just one) is that I had aggressive cancer inside my body for about 6 months and I had absolutely no freaking clue. That’s right, my disease was progressing and growing inside my body and I didn’t think anything was wrong.

Know the signs of metastatic melanoma

Some might call that naïveté (and you might be right) but I like to chalk it up to lack of education. As far as I’m concerned, there continues to be a HUGE gap in education about metastatic melanoma. Sure, seeing a dermatologist regularly is a very important piece of the puzzle - especially if you have a history of skin cancer. But, these aren’t the only things to look for and I really wish someone had told me that.

My metastatic melanoma symptoms

About 4.5 years after my initial melanoma diagnosis (stage IIA), I felt a small bump in my upper thigh area underneath my skin. The best way to describe it is as some sort of small pebble. I happened to have a visit with my lady doctor (oh joy) a few weeks after I noticed it, so I showed her. Given my history with melanoma and my family history of breast cancer, I figured she’d tell me if I needed to be concerned or not. She told me it was likely a swollen lymph node and to not worry about it. I immediately questioned her, but she reassured me it was probably nothing. So, I believed her.

A couple of weeks later I noticed another, even larger bump, on the backside of my leg. This was also very deep, underneath the skin and sort of felt like I was sitting on a rock when I sat down. I remember making my boyfriend feel my newly found lumps, but we just thought they were weird muscle knots and they’d go away soon.

Is a bump just a bump?

Fast forward to a couple of months later, I developed another muscle knot on my opposite leg. This one was on my thigh and was relatively large. I was wearing leggings one day and scratched my leg and felt it. Again, I thought it was weird, but really didn’t think much about it. To be honest, cancer progression wasn’t even a possibility as far as I was concerned. I had been to the dermatologist religiously and right on schedule. If my melanoma had returned, they would have clearly found another suspicious mole, right? WRONG.

Wishing I knew the signs

To this day, I’m still so furious that I had no idea what metastatic melanoma could look and feel like. I was (rightfully) under the assumption that when I had my wide-excision and clear margins on my shoulder, they got it all. They told me to be diligent with skin checkups and I was. I literally bought two different foam rollers to try to roll out my muscle knots. Only to find out later that they were never muscle knots, but my melanoma had metastasized - and to places I couldn't feel, like my lungs, heart, and brain. It’s hard not to wonder ‘what if’ - if I had seen these signs earlier, maybe the cancer wouldn't have gotten all the way to my brain?

Creating awareness for metastatic melanoma

The purpose of this story isn't to create fear of cancer spreading. But it is to bring awareness to what it does feel like IF it does spread. Other than my lumps and bumps, I was completely asymptomatic, which further convinced me that my lumps were nothing.

It’s a constant battle of being hyper-aware of your body while also not creating situations that aren’t really there. That’s a delicate balance that we, as cancer patients, have to find. If it feels off or different, have it checked out. It just might save your life.

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