Medical Guidelines
When I was diagnosed with primary central nervous system lymphoma (PCNSL) in November 2023, my doctors called it a “rare disease.” The young doctor breaking the news nearly wept as she told me my diagnosis and encouraged me with “DO NOT GOOGLE” this. When I googled it, I could see why—it was horrible! Best case scenario was a pretty short stint left on this earth. Some do better than others, the words were – incurable, but treatable.
The preferred path recommended for me was clear: high-dose chemotherapy, rituximab infusions, temozolomide, and eventually autologous stem cell transplant (ASCT). And if that failed, maybe, just maybe I would be lucky and get into a clinical trial for a new immunotherapy drug when the cancer recurred. And I was assured it would return – AGGRESSIVELY if I didn’t stick with the regimen.
Always a bit of a rebel at heart, I chose a different path.
Rather than becoming the kind of “warrior” who fights my own body with toxic regimens, I chose to be a cancer rebel. I leaned into breathwork, fasting, whole foods, meditation, exercise and chemical-free living. Along the way, I eradicated a chronic dental infection—a root cause I could clearly trace to my illness. Within months, my scans showed no active disease. These are my scans, the left taken at the Mayo Clinic – the right at Reno Diagnostics. Different technology. (Note: I may not have pulled the exact same image from the CD. I am not a radiologist, so if an expert would like to compare my scans, please reach out.)
The Limits of Guidelines
The NCCN Guidelines for PCNSL describe my cancer as the result of genetic mutations in lymphocytes, with risk factors like HIV, Epstein-Barr virus, autoimmune disease, organ transplants, or simply being old. Other than being 64, none of these applied to me. There was no mention of dental infections, environmental toxins, or other possible root causes.
As mentioned earlier, the treatments they recommended for me—methotrexate, rituximab, temozolomide, and eventually ASCT—are intense and risky. Nothing in the guidelines suggests they have any real understanding of how the cancer developed or how the body itself might help or participate in the healing process. Cure is described as rare, and clinical trials are recommended for everyone.
Not Just My Cancer
This drug-centered playbook is not unique to PCNSL. Consider prostate cancer, one of the most common cancers in men. The NCCN Guidelines for Prostate Cancer emphasize surgery, radiation, and hormone therapy, but still highlight clinical trials, recurrence management, and long-term drug dependence.
They frame the cause as “genetic changes” or “just aging.” Lifestyle is brushed aside. And while early-stage prostate cancer is labeled “often curable,” advanced cases shift right back to the same language of management, remission, and control.
Here’s the comparison in black and white:
Category | PCNSL (Brain Lymphoma) | Prostate Cancer |
Main Treatments | High-dose chemo, rituximab, radiation, stem cell rescue | Surgery, radiation, hormone therapy, active surveillance, chemo for advanced |
Role of Clinical Trials | Explicitly recommended for every patient; framed as a top option | Mentioned as options; pitched as cutting-edge research |
The details differ, but the pattern is identical:
- Narrow causes (genetics, age).
- Aggressive drug/surgery protocols.
- Clinical trials positioned as the “next hope.”
- Pharma funding quietly underwriting the guidelines.
Where Patients Fit
In neither guideline set do patients find advice on self-care, diet, detox, or root cause exploration. Instead, the role assigned is passive: accept treatment, manage side effects, stay in line. The message is clear—control is not in your hands.
But my story, and the stories of others, show otherwise. Addressing infection, nutrition, breath, and toxins gave my body the space it needed to heal. Along the way, I learned about neurogenesis—the brain’s ability to grow new cells—and I wrote about it in “The Brain’s Amazing Ability to Regenerate: Neurogenesis & My Journey.”
That perspective—that you are not powerless—is missing from official playbooks.
Rebel, Don’t Just Comply
The NCCN guidelines are one perspective, not the only path. They are influenced by drug companies, written by panels of doctors tied to the very industry that profits from perpetual treatment.
Take what’s useful from them—but question the rest. Explore your own root causes, and above all, examine the substances you are consuming.
Look at your body not just as a battlefield but as a system capable of healing if supported. If you’d like to see the specific protocols I applied, I detailed them in “Breathing New Life into Cancer Recovery: A Data Backed Challenge to Conventional Protocols.” I’m living proof that you can rebel against the system and still find hope, healing, and clear scans.
Lastly, we need to recognize how our own governance systems are keeping us sick. I explored that in “The Toxic Web – Inadequate Governance, Overlapping Databases & Big Money Keeping America Sick.”
Linda Wulf
My journey with CNS lymphoma not only shaped my perspective on health but ignited a mission to uncover and educate about the myriad chemicals we encounter every day.
