u/BeautyOfPhi

Hi everyone, I’m a 23-year-old male diagnosed last year with an extremely rare brain tumor called **high-grade glioma with pleomorphic and pseudopapillary features (HPAP)**, a newly recognized glioma that has also recently been proposed to be called GPAP. I had a **gross-total resection in July 2025** and did not receive radiation or chemotherapy afterward. My tumor was well circumscribed and largely cystic, but pathology showed high mitotic activity/Ki-67 despite lacking several classic aggressive glioma features, including no necrosis, no microvascular proliferation, no confirmed EGFR amplification, no TERT promoter mutation, no CDKN2A/B homozygous deletion, and wild-type TP53. NIH methylation testing ultimately classified it as HPAP. My MRIs were stable for roughly a year, but my August 2026 MRI now shows very small nodular FLAIR abnormalities along the resection cavity that have slowly increased compared with scans dating back to January. They remain non-enhancing, without restricted diffusion, without convincing increased perfusion, and without significant choline, lipid, or lactate abnormalities on spectroscopy. The radiologist did not definitively call recurrence, although my doctors are concerned this may represent a very slow recurrence and radiation may be my next treatment. I’m mainly posting because I’d love to hear from others with gliomas: Are there any 10-, 15-, or 20+ year survivors of Grade 2–4 gliomas here? Has anyone had a recurrence and then remained stable for many more years? If you received radiation, did you have proton or photon treatment, what were the short- and long-term effects, and how are you doing today? Wishing you all the very best, we are a part of a rare club my friends!

Hi everyone, I’m a 23-year-old male diagnosed last year with an extremely rare brain tumor called high-grade glioma with pleomorphic and pseudopapillary features (HPAP), a newly recognized glioma that has also recently been proposed to be called GPAP. I had a gross-total resection in July 2025 and did not receive radiation or chemotherapy afterward. My tumor was well circumscribed and largely cystic, but pathology showed high mitotic activity/Ki-67 despite lacking several classic aggressive glioma features, including no necrosis, no microvascular proliferation, no confirmed EGFR amplification, no TERT promoter mutation, no CDKN2A/B homozygous deletion, and wild-type TP53. NIH methylation testing ultimately classified it as HPAP. My MRIs were stable for roughly a year, but my August 2026 MRI now shows very small nodular FLAIR abnormalities along the resection cavity that have slowly increased compared with scans dating back to January. They remain non-enhancing, without restricted diffusion, without convincing increased perfusion, and without significant choline, lipid, or lactate abnormalities on spectroscopy. The radiologist did not definitively call recurrence, although my doctors are concerned this may represent a very slow recurrence and radiation may be my next treatment. I’m mainly posting because I’d love to hear from others with gliomas: Are there any 10-, 15-, or 20+ year survivors of Grade 2–4 gliomas here? Has anyone had a recurrence and then remained stable for many more years? If you received radiation, did you have proton or photon treatment, what were the short- and long-term effects, and how are you doing today? Wishing you all the very best, we are a part of a rare club my friends!

Hi everyone, I’m a 23-year-old male diagnosed last year with an extremely rare brain tumor called high-grade glioma with pleomorphic and pseudopapillary features (HPAP), a newly recognized glioma that has also recently been proposed to be called GPAP. I had a gross-total resection in July 2025 and did not receive radiation or chemotherapy afterward. My tumor was well circumscribed and largely cystic, but pathology showed high mitotic activity/Ki-67 despite lacking several classic aggressive glioma features, including no necrosis, no microvascular proliferation, no confirmed EGFR amplification, no TERT promoter mutation, no CDKN2A/B homozygous deletion, and wild-type TP53. NIH methylation testing ultimately classified it as HPAP. My MRIs were stable for roughly a year, but my August 2026 MRI now shows very small nodular FLAIR abnormalities along the resection cavity that have slowly increased compared with scans dating back to January. They remain non-enhancing, without restricted diffusion, without convincing increased perfusion, and without significant choline, lipid, or lactate abnormalities on spectroscopy. The radiologist did not definitively call recurrence, although my doctors are concerned this may represent a very slow recurrence and radiation may be my next treatment. I’m mainly posting because I’d love to hear from others with gliomas: Are there any 10-, 15-, or 20+ year survivors of Grade 2–4 gliomas here? Has anyone had a recurrence and then remained stable for many more years? If you received radiation, did you have proton or photon treatment, what were the short- and long-term effects, and how are you doing today? Wishing you all the very best, we are a part of a rare club my friends!

Hi everyone. I’m currently a 23-year-old male who recently graduated from university after being diagnosed at 22 with an extremely rare brain tumor called high-grade glioma with pleomorphic and pseudopapillary features (HPAP). Because this tumor is so rare and newly recognized, I wanted to share my story to bring some attention to it and hopefully hear from others who have lived with gliomas long-term.

(I have questions at the bottom, if you're not too interested in my long history but still have experience with gliomas. Please feel free to scroll down to where my question section is and answer freely -- thank you!)

Before February 2025, I was an active, healthy 22-year-old. I was studying at university, going to the gym almost every day, traveling, and doing pretty much everything you would consider normal for someone my age. That changed in mid-February when, shortly after finishing an interview for an internship, I suddenly felt one of the worst pains I had ever experienced on the right side of my head. I described it as feeling like a metal pole had pierced through my skull. I also lost coordination and spatial awareness on the left side of my body and started bumping into things around my apartment. I wasn’t sure what was happening, so I slept on it and felt mostly better the next day, but my parents, who were on vacation at the time, insisted that I go to the hospital. I reluctantly called an ambulance from campus outside my main academic hall—but only after going to class first because, apparently, academics still took priority while my brain was bleeding.

At the hospital, CT and MRI scans showed a brain hemorrhage associated with a right posterior parietal lesion (an abnormal area in the right rear portion of my brain with bleeding around it). Doctors couldn’t determine what had caused the bleed. Possibilities included an AVM (an abnormal connection between arteries and veins), cavernous malformation, tumor, or another vascular abnormality. Since there was no immediate danger and the blood products made the underlying lesion difficult to see clearly, the recommendation was to wait and repeat the imaging. About two months later, in April 2025, another MRI showed the lesion was essentially unchanged in size but easier to visualize as the blood resolved. There was no significant enhancement or surrounding edema. Doctors still had no idea what it was, and one possibility was a cavernous malformation that had bled during a period when I was under significant stress and using a lot of stimulants like caffeine and Adderall. Since the imaging was inconclusive and I had no ongoing symptoms, we continued watching it.

Then came June 2025. I was attending orientation for the same internship I had been interviewing for when the original bleed happened—apparently this company and my brain were not getting along. After the first day of orientation, I returned to my hotel room and began feeling the same left-sided wobbliness and altered perception I had experienced during the hemorrhage. I knew something was wrong. I managed to sit on my bed, call 911, tell the dispatcher my hotel and room number, and then started seeing flashing lights before falling to the floor. I had a seizure, which became the second major neurological event associated with the lesion. Another MRI now described a primarily cystic right parietal mass. Most of it contained complex cystic fluid, while along the posterior-medial portion there was a smaller solid soft-tissue component showing mild patchy enhancement and imaging changes corresponding to calcification on CT. In simpler terms, most of the lesion was cystic, with a smaller solid tumor-like component along one side. There still didn’t appear to be dramatic growth compared with April, although measuring the cystic portion complicated the comparison. At that point, surgery became the clear next step.

In July 2025, I underwent a right parietal/parieto-occipital craniotomy, and my neurosurgeon achieved a gross-total resection (GTR), meaning all visible tumor was removed. Before surgery, because the lesion was well circumscribed and had shown very little obvious growth over several months, some of my doctors thought it could potentially be a relatively low-grade tumor, possibly even around Grade 1. Then the pathology came back, and things became much more confusing. Initially there was concern for glioblastoma because the tumor was IDH-wildtype and H3-wildtype, and one early report raised concern for EGFR amplification. However, two additional pathology/molecular evaluations did not confirm EGFR amplification. Further testing showed no TERT promoter mutation, no classic +7/−10 glioblastoma-type copy-number signature, no CDKN2A/B homozygous deletion, no microvascular proliferation, no necrosis, and TP53/p53 was wild-type. Despite lacking many of those classic high-grade features, the tumor had high mitotic activity and an elevated Ki-67 index (both indicate that a significant proportion of the tumor cells were actively dividing), as well as a pathogenic RB1 alteration and a PTEN alteration reported at relatively low allelic frequency. So my doctors were calling it high-grade because of its proliferative activity, while at the same time many of the classical high-grade features were absent. It was also well circumscribed rather than obviously diffuse/infiltrative and had shown little radiographic growth for roughly six months before surgery. This created some very conflicting opinions, even among doctors at major brain tumor centers.

It wasn’t until the end of August 2025 that additional testing through the NIH, including DNA methylation profiling (a molecular test that identifies tumors based on patterns of gene regulation), finally gave us an answer: high-grade glioma with pleomorphic and pseudopapillary features (HPAP), with a methylation classifier confidence of approximately 0.99. After about seven months of uncertainty, a brain bleed, a seizure, surgery, multiple pathology reviews, and not knowing exactly what had been growing inside my head, we finally had a name for it. HPAP is an extremely rare and newly recognized glioma, with only a very small number of cases described in the medical literature. Newer research has even proposed dropping the “high-grade” wording and calling it glioma with pleomorphic and pseudopapillary features (GPAP), with the idea that some of these tumors may behave more like an intermediate-grade glioma. Because I had a gross-total resection and because of the unusual biology of the tumor, my doctors and I decided not to immediately pursue radiation or chemotherapy and instead continued close MRI surveillance.

I’ve had MRIs approximately every three months since surgery, and things initially looked good. However, my most recent MRI in August 2026, a little over a year after surgery, showed small nodular FLAIR-hyperintense areas along the resection cavity (areas that appear brighter on a particular MRI sequence and can represent abnormal tissue, gliosis/scarring, or tumor). Importantly, these areas are non-enhancing, do not show restricted diffusion, do not show convincing increased cerebral blood volume on perfusion imaging, do not show significant choline elevation on MR spectroscopy, and have no lipid or lactate peak. The radiologist did not definitively call this recurrence. The report said the abnormalities were not significantly changed from my June 2026 MRI but had slowly increased when compared with scans dating back to January 2026, and recommended continued follow-up imaging. My neuro-oncologist, however, is concerned that this could represent a very slowly growing recurrence. Based on the tumor’s overall behavior, my neurosurgeon has described it as behaving more like an intermediate Grade 2–3 glioma, possibly somewhere along that spectrum rather than like a conventional rapidly progressive Grade 4 glioma. At this point, some of my doctors are concerned enough about recurrence that radiation may be my next treatment. The abnormality is currently so small that my neurosurgeon does not favor another operation because there is a risk of not being able to reliably identify and remove something that tiny.

I honestly don’t know where this long road is taking me or where it ends. I wanted to share my story because my diagnosis is extraordinarily rare (I am 1 of maybe 60 confirmed cases)  and because, at the end of the day, this is still a glioma and I’m dealing with many of the same questions and fears as everyone else in this community.

Question Section:

Are there any long-term survivors here—10, 15, 20+ years—after being diagnosed with a Grade 2, 3, or even Grade 4 glioma? Have any of you had a recurrence and then gone on to have many more years of stable disease? If you received radiation, was it proton or photon radiation? How did you handle treatment, what short- and long-term effects did you experience, and how do you feel about your long-term prognosis now?

I’m sitting here writing this after work at 23 years old, still kind of mind-blown by where my life has taken me. Not long ago I was mainly worrying about university, internships, going to the gym, traveling, and what I wanted to do after graduation. Now I know way more than I ever wanted to know about methylation profiling, Ki-67, perfusion, spectroscopy, and FLAIR hyperintensity. I don’t know what the future holds. I hope I make it well beyond 45, and I hope I have decades of life ahead of me. I hope everyone reading this does too. To everyone dealing with a brain tumor—whether you’re newly diagnosed, years into treatment, stable, dealing with recurrence, or supporting someone you love—I wish you the absolute best. Go live, go conquer, and accomplish everything you’re capable of. Thank you for reading my very long story.