5-year-old with lymphocyte-rich classical Hodgkin lymphoma but clinically looks completely normal
Hi everyone. I just want to ask if anyone here had a child diagnosed with possible/confirmed pediatric Hodgkin lymphoma despite having very minimal symptoms?
My daughter 5 years old. She had a neck mass for almost a year that slowly grew to around 6 cm, but throughout that whole time she remained very active, playful, eating normally, growing well, and rarely got sick. No fevers, weight loss, or night sweats.
Initial incision biopsy was inconclusive, then excision biopsy later became concerning for lymphocyte-rich classical Hodgkin lymphoma based on immunostains.
PET-CT reportedly showed no disease below the neck. The remaining finding is mild bilateral retropharyngeal nodes/tonsillar uptake in the head and neck area only.
We are currently still going through 2nd opinion and I’m struggling emotionally because clinically she does not look sick at all. Part of me is still scared of misdiagnosis before starting chemotherapy.
Did anyone here experience:
very slow/localized pediatric Hodgkin lymphoma?
inconclusive first biopsy?
child looking completely normal despite diagnosis?
retropharyngeal nodes remaining after excision?
successful treatment with minimal long-term effects?
I know every case is different. I think I just need to hear from real parents/survivors because this has been mentally overwhelming.
Thank you ❤️