Thursday, October 19, 2023

Five Years NED

(Look at me, doing a post that isn't just a kid's birthday post!)


Today is a big day for me.

Today, I am 5 years post-active-treatment.  It's been 5 years since I was declared "NED."  

NED, for those not in the breast cancer world, stands for "No Evidence of Disease."  When you have breast cancer, the word "remission" isn't really used.  The chance of recurrence is so high that, instead, you're told that there is "No Evidence of Disease," with the world "currently" implied.

Most breast cancer statistics are defined by the 5 year and 10 year marks, so reaching the 5 year mark means you're now included in the "long-term" survival statistics.  In reality, each year you survive after active treatment, your survival rate goes up & risk of recurrence goes down, but 5 years feels big.  It feels important.  

Active treatment is different for everyone, but for me, it included nearly 6 months of chemotherapy, a double mastectomy, and 6 weeks of daily radiation.  It's called active treatment because most breast cancer patients also have years of treatment after that initial year or so.  Those following years, in my case, have involved:

  • a few years of monthly shots, followed by 
  • a bilateral salingo-oopherectomy (removal of ovaries and fallopian tubes)
  • daily pills (with another 5 years to go on those)
  • bi-weekly myofascial release appointments to deal with radiation and chemo-caused tissue and muscle issues
  • yearly follow-up scans for bone loss and arthritis, caused by the daily pills
  • an infusion every couple of years to treat the bone loss
  • appointments to deal with chemo-induced rheumatoid arthritis
  • daily pills for an under-performing thyroid caused by chemo 
  • a whole host of other side effects - massive weight gain, daily pain, continued tenderness from the drains placement after surgery, changes in my hair, skin, and nails, continued brain fog/chemo brain, changes in my eyesight, complete loss of previous energy & stamina (causing trips to the hospital if I overdo things)
  • early menopause - first caused by the chemo, then the shots, then the oopherectomy.  And that comes with its own side effects!
All of that being said, I would so much rather be here than not be here.  

I am one of the lucky ones.  So many women have it so, so much worse.  I made it through active treatment, I'm dealing with the rest of it, and I have an amazing support system in my husband, kids, family, and friends.

Cheers to 5 years NED!



1 week before starting chemo

port placement, pre-chemo

first chemo, icing hands and feet to prevent neuropathy

toward the beginning of chemo, with one of my kitty therapists

mid-chemo

further into chemo, losing my eyebrows & lashes

the incredible quilt my entire family decorated for me

toward the end of chemo, with brows & lashes gone

celebrating a day when I did my makeup and created eyebrows

final chemo!

prepping for my double mastectomy

flat and still bald

mapping for radiation (not pictured-my five permanent radiation tattoos)

first radiation, wearing a robe gifted from a friend

final radiation - end of active treatment!

starting to have a decent amount of hair, pictured with my other kitty therapist

a family trip to Universal to celebrate the end of active treatment!

1 year post-active treatment, learning to deal with curly hair

this morning, quick selfie 



Thank you to my family, especially, for the incredible support.  I wouldn't have made it through the year of treatment and the 5 years since without you. 




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