Thursday, August 11, 2011

What is a survivor?

I have mentioned before that I have done several 5k run/walk events for breast cancer awareness over the years.  One of them was after my dear friend and my sons aunt lost her battle.  The team was named after her favorite movie, and I made everyone pink ribbons that had her name on them.  While I was at it, I asked around if anyone wanted me to wear a ribbon with a friend or family members name on it during the walk.  I ended up wearing 12 names that day.

In asking around, I got a couple of responses that did not make sense to me at the time.  They were two people who had almost identical cases, one had a lumpectomy, the other chose a mastectomy due to family history, but neither required any further treatment.  I asked them if they would like for me to walk in honor of them being survivors.  Both of them gave me almost identical responses.  They declined, saying that because they feel that because they only required surgery, that they didn’t feel like they had fought cancer and survived.  I felt it was very strange to say that after having been through surgery and recovery..

After hearing their responses, and in researching another cancer event that is for all types of cancer, I came across something very interesting.  Some event coordinators or team coordinators had posted on message boards asking how to determine who to recognize as survivors.  What?  Someone else is going to determine whether someone is a survivor or not??  To me that is nuts.  I had to read on.  The answers, and this was in several forums, were consistent.  If your doctor ever told you that you had cancer, and you are now cancer free, then you are a survivor, regardless of what your treatment consisted of.

I now understand how these two women felt.  I have heard people tell others about worse stories, as if theirs doesn’t compare so it isn’t important.  I have even had someone tell me that someone else’s surgery was worse than mine, so I cant wonder about their recovery.  I look at blogs and my little 6cm line across my bicep is nothing compared to some that are taking up more than that in inches.. I didn’t have to have my lymph nodes removed or have a drain.  I didn’t require extra medications.  I just have a 6cm line and have to go every quarter for skin screenings.  Sometimes I feel unworthy of sharing my story, because my melanoma was “just cut out” and I am “fine” now.

Luckily, every time I feel like I shouldn’t share my story, something comes along and shows me that I definitely should be sharing it.

Now, to throw a wrench in my thoughts about being a survivor.  Something I don’t know much about, and am only just learning, and need to understand more. With melanoma, survivor isn’t the right (or wrong?) term, it should be NED, No Evidence of Disease.  Like I said, I am only just coming across this term, it makes sense to me, since melanoma is the beast that is.  Yet at the same time, it isn’t making sense to me.  It is definitely something I need to research more.


  1. My brother was first diagnosed with melanoma (Stage 1 or 2...I never really knew) about 6 years ago. He had it "simply cut out" of his back...a golf-ball sized hunk of flesh, but still, all cut out and supposedly all gone. It's this "lucky" diagnosis and treatment that makes people think that melanoma is no big deal. But I digress. He had always been apart of Relay For Life in the Akron, OH area, but never wanted to wear the survivor badge or ribbon. He didn't consider himself a survivor because of the same reasons you state. We told him that if you were in a gunfight and the bullet missed, you be considered a survivor of the what's the difference whether you're shot or not? He accepted this and started to embrace the title and bonded more firmly with others.

    As for NED versus "survivor"...I think you can be both. It's the term "cure" that one has to be cautious of using. Unfortunately, melanoma has a nasty habit of making a comeback...I would guess at least in one's mindset, that you're never fully cured. But that's only my opinion. Great post!

  2. I was diagnosed 3b in March of this year. Since then I've had 4 surgeries and 2 biopsies. Do I consider myself a survivor because I didn't do Interferon or chemo?? HELL YES! Do I consider YOU a survivor because you only had one surgical procedure? HELL YES! You and I both live every SINGLE day with the knowledge that Melanoma can come back easily. I tell others in the melanoma world I am NED because they understand. You're never really FREE of melanoma. It gets into your soul. But I tell others outside in the world that I'm in remission so they understand I'm clear for now... but I live with the fear of it coming back every second of every day. So you hold your head high and educate others about Melanoma, and know that you ARE a Cancer survivor, and a Melanoma Warrior!!