Hello!
My husband, Shel Sax, was profoundly helped by the OCF and, in particular, this forum. He lived more than 20 years as a head and neck cancer survivor. Shel died in August 2024 after a valiant journey with Brian Hill as his mentor and hero. I'm writing to you on behalf of a dear friend, Linda, who lives in British Columbia..

Many of you may remember that entering the OC world and website can be a bit overwhelming. Linda isn't quite ready to post yet, so I offered to share her story on her behalf- at least for now.

While I live in Vermont, USA, Shel was Canadian. We lived in BC for 12 years, and I continue to have close ties there. I deeply value Canadian universal and accessible health care. At the same time, specialized care can sometimes involve frustrating delays, and reassurance is not always aligned with how quickly things can evolve.

Linda was first diagnosed in April 2025. She had discovered a lesion at the site of a failed implant back in 2019; that area was removed in June 2025. The ENT surgeon initially reassured her that she didn’t need to worry and suggested a follow-up in a few months. As a witness to Shel's experience,, I encouraged her to find an oral cancer clinic. She was able to obtain appointments at the BC Cancer Center in Vancouver in September 2025.

A second lesion near the first grew and was removed in October 2025, along with a section of the cheek due to inflamed lichen planus. A third lesion appeared in Feb 2026, at the site of the second lesion, and was removed.

Last month (March 2026), Linda had a bone fragment removed from the gum; pathology showed osteoradionecrosis medication-related, possibly related to Fosomax taken about 25 years ago. To date, no one has suggested that the cancer originated due to necrosis.

All three lesions were confirmed to be carcinoma in situ. The biopsy also showed p53 abnormal overexpression pattern and abnormal p16. The site of her most recent surgery is positive for moderately invasive Squamous cell carcinoma.

Linda is understandably concerned about how quickly new lesions are appearing. She is being cared for at the BC Cancer Center, where they plan to see her every three months and develop a treatment plan. I've encouraged her to call to put her on the cancellation list.

Is there anything else she should consider? For example, there is a Metabolic Cancer Clinic in Vancouver; is this something of value as complementary care?

Also, are there any Canadians (or others familiar with BC Cancer/oncology pathways) who might be willing to reach out personally to Linda or share experience with a similar situation? And/or can you direct me/us to previous threads/posts that could be of help to Linda? Or should we start a new thread, and if so, where?


Thank you for any help or guidance you can offer.

With warmest regards,
Peggy Sax
Cornwall, Vermont

Co-Founder of the Oral Cancer Foundation and a Lifelong Advocate for Patients, Survivors, and Families

“Brian believed no one should face oral cancer alone. His legacy will live on through the lives he touched, the community he built, and the mission that continues in his honor.”

The Oral Cancer Foundation mourns the passing of Brian Hill, our co-founder and a tireless advocate for patients, survivors, and families affected by oral cancer.

Together with his late wife, Ingrid Hill, Brian founded the Oral Cancer Foundation with a mission grounded in compassion, education, advocacy, and support. What began as a deeply personal commitment grew into a lasting source of hope and guidance for countless individuals navigating one of life’s most difficult challenges.

Brian devoted much of his life to ensuring that people affected by oral cancer would never have to face the disease alone. Through the online support community at oralcancersupport.org, he helped create a trusted space where patients and caregivers could ask questions, share experiences, find encouragement, and connect with others who truly understood what they were going through. For many, that community became a lifeline.

His work was defined not only by dedication but also by humanity. Brian understood that oral cancer affects far more than just physical health. He recognized the fear, uncertainty, and emotional burden that often come with diagnosis and treatment, and he gave his time, energy, and heart to helping others move through those realities with dignity and support.

Brian’s legacy lives on in the foundation he helped build, in the community he helped foster, and in the many lives he touched through his kindness, leadership, and unwavering service. His contributions to the oral cancer community will continue to be felt for years to come.

In honor of Brian’s life and mission, Chester Deitz will continue leading the foundation forward, building on the work Brian began with renewed dedication to expanding research funding, increasing public awareness through community walks, and developing patient materials for those affected by oral cancer. This continued commitment reflects the values Brian championed and ensures that his vision for education, support, and advocacy will endure.

We extend our deepest condolences to all who knew and loved Brian. We honor his life with profound gratitude and remain committed to carrying forward the mission he helped create.

Brian Hill will be remembered with respect, admiration, and lasting appreciation for the difference he made in the lives of so many. His legacy will endure through every patient supported, every family informed, and every step taken in the fight against oral cancer.

[img]https://oralcancerfoundation.org/wp-content/uploads/2026/03/brian-hill-featured-2026-scaled.jpg[/img]

Hi All,

My first post was in response to someone why had a similar diagnosis to mine, but I read that it's better to introduce myself in a separate posting.

Here I am. 57 yo Male with a 15 year history of Oral Lichen Planus who recently has tongue surgery to remove some lesions. The Pathology report came back with a result of PVL (proliferative verrucous leukoplakia) as a likely cause (not definitive). But here we are, 3 months later and a new lesion which needs to be removed. I'm happy this one is not on my tongue as I do not wish tongue surgery upon my worst enemies!

Worried? Yes.
Scary? Also.
Accepting? Not Yet.
Taking this serious? Definitely!

Would be very interested to get in contact with people with similar experiences.

I'm not in the US, so not much point in pointing me to US specific treatment centres (although I know you mean well!). I think my oral specialist knows what she is talking about!

Back to see my surgeon in just over a week to discuss how to remove the new lesion. Fingers crossed it's less serious than I currently anticipate!

Great to see so many people here reaching out with a helping hand or sending some positive fibes!

Take care all!

Iwan