r/pediatriccancer • u/caitandsamkitty • 9d ago
No Evidence of Disease
My little one has been out of treatment for a year now, and we just got the amazing words “no evidence of disease” for Neuroblastoma. ❤️ He was stage 2, low risk, and the tumor was found on day one of his life. He completed two surgery & 6 rounds of chemotherapy at 3 months. He does have some kidney issues because of where the tumor was, but overall he’s doing well.
My question is — how do you all cope with the anxiety around scans? Every single time they come up, I feel like I can’t breathe. I know recurrence is rare for low-risk Neuroblastoma, but I can’t stop worrying — not just now, but even about the future when he’s older.
I feel almost guilty even asking, because I know many of you are still in the thick of treatment or facing harder situations. I just need some reassurance or to hear how others manage this constant fear. I also have great guilt feeling like I gave him the cancer.
2
u/Amiiblee 9d ago
Congrats on the no evidence of disease - that’s amazing!
Very similar situation for us - my son had intermediate risk neuroblastoma, and he’s been in remission for over a year now after 4 rounds of chemo. Scanxiety is still very real, but time has helped, and especially with the scans spaced out now. Plus if I’m concerned about anything his pediatrician is good about doing follow-up tests.
I try to tell myself how much stats are on our side with intermediate risk. It’s still scary, especially when your kid gets diagnosed with something so rare, but it helps me personally. That and time passing. I don’t think the worry will ever go away, especially when scan time comes around.
2
u/Professional-Clue-25 8d ago
Congratulations to your son and your family for NED, that’s a huge milestone in the cancer world.
To answer your question- for me personally the worries did lessen substantially with time. In the beginning I stressed out with every fever, every cough, every time my child said something hurts. The more time passed and my child and my family resumed normalcy, the less I stressed out about every symptom being related to cancer (the disease, the treatment, the recurrence). My child didn’t have neuroblastoma, but the cancer they had was stage 3 at diagnosis, so they had to go through it all, the chemo the long surgery, more post surgery chemo, radiation. It was a horrible time in our lives. The tumor histology was favorable, so the chance of recurrence is about 20%. Honestly, I’m not so worried about recurrence, but I am sometimes sad when I think about the late effects of treatment (like doctors saying child may get secondary cancer 20 years down the road from radiation and chemo, or have heart issues from all the chemo…sigh). In 20 years my child will still be so young. Barely starting life.
Most of the time I try to just live in the moment and enjoy what we have (our health that is). I’m being positive and grateful and reminding myself often of the perspective this whole cancer experience gave us. Whatever tomorrow brings no one knows, but life is now, and we will make the most of it while we can.
You’ll be ok. Everything will be ok. Life is different after end of treatment, but then it goes back to a new normal, and eventually go back to almost 100% normal. It did for us. The cancer ride is just insane like that, your life goes from 0 to 100 overnight and then one day back to zero and you’re like: wait, what? It’s all over now? It is. Time to live.
Sending you good vibes and strength.
5
u/mgnwfy 9d ago edited 9d ago
You take it a day at a time. We still have scanxiety even now 13 years out of treatment.
I recommend therapy to deal with your guilt. I had those same feelings that I would go over and over anything risky I had done in the pregnancy ( we were in a study that our history was throughly researched). Therapy to deal with guilty, survival guilt, and dealing with all those dark feelings, even mourning what I expected out of toddlerhood. It slowly get better specially dealing with your new normal.