Primitive Neuroectodermal Tumors

Question: Ever heard of, or know anyone with Primitive Neuroectodermal Tumor? I have a cancer called Primitive Neuroectodermal Tumor (PNET). I know it is rare, and for curiousity sake, want to know if anyone has either had it, or knows anyone with it or who has had it, and what their experience is or was with it. Thanks My tumor is in the left side of my chest, against the chest wall, and had pushed through and wrapped around a few of my ribs. Prognosis seems to be good, finished chemo, radiation, heading into surgery soon.

Answer: Hi Anna, I have seen a few patients with PNET as I work in the field.Symptoms, outcomes, everything is so variable depending where it is , how treated etc. You might find it interesting to go to virtualtrials.com (this web page is endorsed by National Cancer institute) .They have also chat rooms where even the rarest tumors find others who have it. I hope you are doing well and everything will go very well. All the best from mary a

Question: Primitive Neuroectodermal Tumor Cancer while Pregnant? I am 22 years old, and just found out i am pregnant. I was diagnosed with Primitive Neuroectoderal Tumor in 2006. In the past year I have gone through 4 surgeries (remove tumor, reconstruion, put in and removal of port), 23 cycles of chemo (11 of vincristine, doxyrubicin, vincristine, cyclophosphamide, etoposide, and ifosfamide, and 12 cycles of cyclophosphamide and topotecan), 25 rounds of radiation. My tumor is in the chest. Does anyone know of any research or ideas?

Answer: Anna, Are you in remission or still going through treatment? I'm trying to understand if you are worried about further treatment if you are pregnant or if there will be problems with this pregnancy given all your prior treatment...