Living with N.E.D.

Great news! You are N.E.D.!

Huh?

Oh, sorry, it means No Evidence of Disease.

So I’m not cured?

Uh, well, no…

This is a conversation every breast cancer survivor will go through at some point in their journey. For me it occurred on October 24, 2016, two weeks after my bilateral mastectomy with right lymph node removal. At this point I’d been through 8 rounds of chemo, three surgeries (remember that second surgery to fix my expander with the hole in it) and countless weeks of literally fighting for my life.

Death or cured are the two things most of us think of when they think of cancer. However, for me and every other person diagnosed with breast cancer, there is a limbo called N.E.D. (this is breast cancers term for “remission”). With early stage breast cancer you are neither given a death sentence nor are you cured of the disease. Instead you must carry out your life in a constant state of fear and/or denial; whichever suits you best. The thing is, N.E.D. is not the same as being cured, because there isn’t a known cure for breast cancer. It’s more of a “PC” way for health care professionals to say, “Well right now you are cancer free but we can’t say that because it might come back; we just don’t know for sure when or if it will…” then they start showing you statistics that make your head spin.

With this in mind, I’d like to now share some facts on breast cancer recurrence, just in case you or a loved one hasn’t been through a diagnosis (pulled from www.breastcancer.org & www.healthline.com):

Breast cancer can come back in:

  1. The breast area where the cancer was originally diagnosed; this is called a local recurrence
  2. The lymph nodes in the armpit or collarbone near the original tumor location; this is called regional recurrence
  3. Another part of your body such as lungs, bones, liver, brain or (rarely) the opposite breast; this is called metastatic or distant recurrence

Symptoms of metastasis can vary depending on the location, and may include:

  1. Bone pain, numbness, weakness anywhere in the body
  2. Constant dry cough, shortness of breath
  3. Loss of appetite, constant nausea, weight loss
  4. Severe headaches, vision problems, loss of balance, confusion
  5. Seizures

Survival rates for breast cancer vary based on many inputs such as stage at diagnosis, age, race and location:

  1. Relative 5 year survival rate for US Women Under 50 is 90.7%
  2. Relative 5 year survival rate from US Women 50 or older is 90.5%

Okay, now that you are loosely informed, I can continue my explanation on why N.E.D. is such a “bless his heart” pain in my butt. For all intents and purposes he is well intentioned and rarely causes issues. He’s like a big dog, that you rescue to help protect your home, only to realize that he’s way too friendly, mostly just wants attention and will let anyone in as long as they give him a treat and pet his tummy. He’s supposed to give you piece of mind. He’s supposed to give your family piece of mind. However, the truth of the matter is, he’s all for show. He can’t keep the bad guy, cancer, from getting in.

But how do you explain to your significant other, family, friends or that well intentioned stranger that says “But good news is your cured right?!” that in fact you will live the rest of your life in fear/denial of the cancer coming back. Every symptom of recurrence could possibly be from something else, so how do I know when to raise the red flag? It’d be one thing if I was getting scans or testing done regularly but I’m not. Instead I catalog each abnormal thing for my next visit to the oncologist and just hope it was something silly like allergies causing that weeklong headache and not a brain tumor. The truth is Stage IV breast cancer will end your life, either through the treatments you take to keep it at bay or by itself. So no, I’m not cured, mostly I’m just in denial and sometimes scared out of my wits.

These facts are hard enough to take in on my own, but to have my loved ones, who already feel helpless, knowing them as well, is almost more than I can bare. I’ve actually put off writing this piece for over a year because I thought maybe, just maybe, I could live the rest of my life with this secret. The secret that keeps my husband from worrying each time I say my head hurts. The secret that keeps my best friends from worrying when I say my back hurts. The secret that keeps my son from worrying when mama doesn’t feel well. Yet, when my left foob began acting up and all tests were coming up clear (thank God) I began to have more frank conversations about the chances of recurrence and what that would mean for me. These aren’t fun conversations, however, I could no longer allow those I love, or you, to live in the dark.

**If you would like to donate your time or money to help with research/funding for more treatments/cures for breast cancer I encourage you to do your research. With breast cancer awareness month coming up there will be a lot of “pink washing” and you should know where your money is going. Here are some foundations putting in the work for Stage IV breast cancer:

Leave a Reply