Daniel,

Welcome to the OCF forum. I am so sorry for all you are going through. My oral cancer was on my tongue and in one lymph node. I went through surgery and RT in 2020 when I was 52. Your procedures are quite different but I can relate to losing lots of weight, the confusion of how did this happen (not a smoker or much of a drinker), etc. They removed half my tongue and I had a feeding tube through my nose for weeks. I had to learn how to drink, eat, and speak all over.

Upshot, I totally agree with your motivation. I kept a pic of my wife and kids with me at all times in the hospital. My surgery was right after they shut down California for Covid so I was in the hospital without loved ones the entire time. In those darker moments, I would pull on them and God. We got through it. It took many months for me to find my new normal but slowly all things got better. My recovery from surgery improved by the day but from RT I had to be much more patient. Some flavors took years to fully come back and some spicy stuff I still can not eat. I can still recall the first time I spoke to a stranger, ate food in public, etc.

Today, I am stronger for it. I am more present with loved ones, more patient in life, and my relationship with God is deeper. Please keep us up to date as you go through your CT and RT. Your story will certainly help others plus I found journaling to be helpful for me in general.

Stay safe and keep the faith,
Nels

5 years completed since my last radiation, I want to thank all the members who contributed to this group that helped me a lot.I am really so thankful to this forum for all the info and support I got f r om all the members 🙏🏼

How is going?

Eradication of proliferative verrucous leukoplakia with toll-like receptor 7 agonist (topical imiquimod): a case report



https://pmc.ncbi.nlm.nih.gov/articles/PMC11604604/#B18

[img]https://shorturl.at/oT0Ch[/img]

I went to head and neck surgeon at local hospital for 2nd opinion and he completely dissmissed it as not issue, he even asked me "Who told you that you have Leukoplakia?!" Well it was diagnosed by professor at the university dental school plus 2 biopsies on two different sites. He also dismissed it as not an issue and told me come back in one year. Obviously Dr.Google influenced patients makes doctors irritated..

I still believe it is PVL since all signs of PVL are there albeit I am not woman

How are you doing?

I’m actually having it soon too.. I have ORN on my right jaw.near the back, and I’ve had a new primary pop up on my tonsil... same side. My surgeon said he’s not going to go in and operate with out addressing the ORN so… I’m having the cancer removed and the jaw replaced! I’ve been trying to find pictures on the internet but… no luck. Best of luck!

I had a hemiglossectomy and lymph node removal 14 yrs ago - followed by radiation and chemo therapy. This past fall I had a sore throat, after antibiotics I knew something was off - I went to see my original surgeon. I now have a new primary - on my tonsil and part of my palate - the only option is now surgery - has anyone had this happen ? Has anyone been reradiated after 14 yrs? Thanks♥️