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

Thank you Chester,

Ok I think I cracked the code on the donations website. Something about it was not very intuitive to me, but was able to find the log on page to reset my password.

It did capture my donation from this year. I am pretty sure I did one a few years ago, but that's not in my history, maybe I selected some guest donor option.

Doesn't matter.

Thank you for considering a memorial fund drop down option or link or whatever you come up with for Brian.

I did end up in some configuration page for Word Press that said I was not authorized to "View Donor Information" in that Profile>Personal Options tab of the "Edit Profile" options from the top right of the screen.

I eventually figured out if I clicked on the link in the upper left hand corner of that screen it took me to the https://donate.oralcancerfoundation.org/ page with me still logged in to my profile. From there, once I was logged in I was able to click the Big Menu Link "Donor Dashboard", and Eureka that was where the data was.

Anway thank you for what you do for OCF in tending to all these things.

As I get older, I can tell, adapting to the zillion different forum formats and web based interactions is going to continue to get more challenging as things get more variation.

Peace, Out and THANK YOU again!

R/
CQ

Hello ChrisCQ,

Thank you for your kind words about Brian and his ability to help through his posts. I will create something like what you are requesting on the donation website. Once it is live, I will post on a sticky.

The donation website allows you to create an account if you want, and also check out without. I see password requests frequently, so I don't know what the problem is.

Regards, Chester

Ok I see where you can do a donation in honor of.

But there is a field where you can select various donation memorial “funds”; with various folks you can select from a drop down.

It appears as if the donation history options may be broken; as it did not recognize my email or give ability to reset password.

If we could get the drop down to permit a Brian Hill Memorial fund that’d be great.

I’ll see if I can figure out a method here on my end in the mean time.

I’m a newer member and I don’t think Brian ever interacted with me on the forums. I have read a bunch of his replies to other members, so that it almost feels as if I knew the guy, as much as one can from forums. I definitely learned TONS from his replies on the forums.

When his wife died I wanted to send a memorial donation, but somehow the donation dedication option would not allow me to do it (or I could not figure out how to).

Is there a way to set up and donation drive in honor of them?

I am very thankful for his leadership and kindness and mentorship and wisdom offered.

Sincerely,

Chris

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]

Hello 69 BigBlock,


Welcome to the forums.

I hope you are recovering well from your surgery.

My two cents are those types of questions would best be answered by your doctors and / or a second opinion.

Perhaps it would help you weigh the decision to compile a list of your questions and meet again with oncologist to have them explain the relative risks of the options better?

If you are in the US, I’d ask if you are doing this at National Cancer Institute (NCI) designated Comprehensive Cancer Center (CCC). If you are in the US and you are not at a CCC, you may consider getting a second opinion at a CCC if feasible.

They may explain it better or have a different recommendation.

So far my lymph biopsies nodes came back clean (axillary—likely just inflammation reactive on PET/CT).

Have you had a PET?

My PET wasn’t until a while after surgery as my tumor was tiny, and micro invasive.

Side effect risks on both chemo and immunotherapy are highly personally variable, might be a crap shoot.

Maybe request them help you decide?

Maybe as you chew on the questions and read more up on the side effectcts and ask clarification questions to your care team you’ll arive at a more comfortable understanding of the risk and your situation?

Did they do HPV testing on it? Mine they did not, and I wished they did.

My Dad and Brother both had bad reactions to Chemo and immunotherapy like treatments (details obscured in exact regimen, both had Carboplatin)

Best wishes for a cancer free recovery for you and clarity of mind in deciding your course of action.

R/
CQ

Hi everyone.
Im new to the forum.
Im 6 weeks post operation.
I had a partial glossectomy and neck dissection on the left side of tounge and neck on February 12th. There were clear margins. One out of 41 lymph nodes had a cancerous deposit of 0.1cm.Very small deposit that the Dr was not too concerned with. This caused my diagnosis to go from Stage II to Stage III.
At my second post operation appointment Dr. said healing looked very good.
Approximately a week later Dr called and informed me that the Tumor Board had met regarding my case and unanimously decided radiation therepy was NOT necessary in my case. Dr. then informed me that they would like to offer me immunotherapy IF I was interested.
Met with an oncologist regarding the immunotherapy. Keytruda is what was recommended. Ended up leaving with more questions than when I arrived.
My concern and question is if the Tumor Board recommended no radiation therepy but offered immunotherapy, if I wanted it, would the trade off for a potential increase in reduction of recurrence be worth all the side effects of immunotherapy? Or would tri monthly monitoring be a better direction to pursue?

I look forward to responses.

Thanks.

69BB.

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

Hello Iwan,

Welcome to the forums.

I do not have PVL, mine was a plain jane leukoplakia with moderate epethelial dysplasia that I was told had a about a 10% chance of converting to oral squamous cell carcinoma over my entire lifetime.

For me that was about 5 years.

According to Sook Bin Woo's Oral Pathology text


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"This entity is defined by World Health Organization (WHO) as a distinct form of multifocal leukoplakia characterized by a progressive clinical course, changing clinical and histopathological features and is associated with the highest risk for oral carcinoma development. However, it differs from the more common localized leukoplakia in many aspects."

She later states "Over time, 50% to 100% of proliferative leukoplakias develop carcinoma."

So my two cents would be get established with a oncological surgeon, probably an ENT, and if at all possible at a Comprehensive Cancer Center (CCC---if that is not where you are already being seen or by whom you are being seen).

Lichen Planus, and PVL are on opposite ends of the risk spectrum with regard to likelihood of converting to cancer.

If the risk is that high, I'd imagine a CCC would take you as someone with a high risk potentially precancerous lesion.

They also may be better equipped to clarify the diagnosis

They may have new developments and treatment options and research trials at the larger teaching hospitals /CCC and more experience treating your condition.

Best wishes for a benign future for you, but I'd encourage you to dot your i's and cross your t's with regard to being diligent in your follow ups and staying on top of any changes, as it sounds like your variant can be a bigger pain in spreading and changing, even if it never becomes cancer.

Hi aotagandco,

I was recently diagnosed with PVL even though my oral specialist thinks it might be my Lichen Planus which flares up.

In November last year I had some lesions removed from my tongue (surgery which I cannot recommend anyone volunteering for!) and a checkup earlier this month identified a new lesion.

The pathology of the first lesion stated "These features are in the spectrum seen in proliferative verrucous leukoplakia. Clinical correlation is required and regular
review is recommended. Further biopsies may be indicated."

I now have a meeting booked with the surgeon to discuss the removal and testing of the new lesion.

I guess I'm at the start of a potential devastating road but very interested in talking with others going through a similar thing.

It's been a while since you've posted. I hope you are doing well.

Kind regards,

Iwan