Expert: Claes-Gustaf Nordquist, M.D. - 11/30/2008

Question
Thank you in advance for your time reading my daughters info and taking time to let me know what you think.

My daughter was diagnosed. at 18 months with bi-lateral retinoblastoma, and after the intital diagnose. she had 2 recurrences.  She has been through systemic chemo, local chemo, laser therapy, plaque radiation and IMRT radiation and has been stable for about 2.5-3 years now.  The only lasting effects have been radiation retinopathy, peripheral neuropathy, glaucoma and cataracts.  She has had annual MRI's since and has been found to have a 5mm pineal cyst.

About 6 months ago we noticed she was gaining a pretty good amount of weight, like 3-8 pounds a month for the last 6 months.  We have decreased her caloric intake to about 1000 calories a day, which slowed the gain down to 3 a month instead of 2lbs. per week.  Her pediatrician ran labs (cbc, chem panel, thyroid, and hormone test) which all came back normal.  Her weight gain looks like it is all in her chest and stomach.  And this week while helping her to get dressed after a shower, I noticed she was growing pubic hair.  And I'm worried, is this one of the scary secondary cancer you hear about with bi-lateral rb?  Could this be from the cyst?  Or another damaging effect of the chemo and radiation?  We have an appt. with an endocrinologist, but I am at my wits end.

Thank you so very much,
Mandi Bruyere

Answer
I doubt that it has to do with her pineal cyst but I do not know. At this stage no one does. We will have to wait for her endocrinological investigation. But it seems she is coming into a VERY early puberty - pathologically early! Such cases do exist, often due to pituitary or adrenal lesions, but sometimes without any apparent reason.