Newly diagnosed and scared

Hi @deb26 and welcome to our head and neck group. Proton is the best for accurate zapping with minimal peripheral damage. Good luck and if you have any questions or concerns, this is the place.

I too have had HPV tonsil cancer and just wanted to say all of the comments here are spot-on. Don’t be afraid of the unknown! Fight like you’re in a boxing match and you MUST be victorious! It’s a tough road, but it’s doable if you don’t give up. I was 62 when I went through this process. It’s gets better just give yourself some time. I thought I would be better in a month and pushed myself too hard. LISTEN to you Drs but more importantly your body. 🙏🏼

I started my own Facebook page with friends too because I wanted people to support me and who I could share my fears with. If you want to read my story as it progressed-Jersey’s-Karen’s cancer journey. Praying 🙏🏼 for you to find peace.

Hi, I had a similar diagnosis in spring of 2022 and went through the 7 weeks of radiation and chemo treatment. I was also stage 1 when we found out. You’ll be in good hands with your medical team. If you have been active and have good metabolism I would have a good conversation about pro & cons of a feeding tube early in the process. I had to have rush surgery at 5 weeks because I had lost 50lbs to that point and really struggled getting calories in. I know each person and medical team is different but a really honest conversation early on will help you understand the options. I also had daily hydration IV appointments scheduled with radiation that boosted energy through the entire process. Its a hard treatment but many in this community have seen good results. We are all here to listen and share if you need us.

Thank you for sharing.

I agree with the comments above, definitely have a good conversation regarding the feeding tube. My team strongly recommended I have one put in well before any treatments started and I'm so glad I took their advice. I would have never maintained my weight and nutritional needs without it. A patient I know refused to have one and when he began to have difficulty eating had to put treatments on hold to get one and allow it to heal before resuming, extending the entire timeline. Something else to consider, I had the type where the only thing exposed was a very small cap which the tube would snap onto whenever I needed to use it. They referred to it as the "button" type. Much less common but much better than the typical version where the entire tube would be with you 24/7. Ask about it. BTW now that it's been removed for a few months there's no sign of it other than a very small scar maybe 1/4 inch. Like it was never there 🙂 I wish you all the best. I like so many others you've heard from are living proof there is life after this journey.

Thank you. Good advice.

@deb26, sounds like your husband is a data guy. I'm glad that his doctor was able to demonstrate the risks and benefits with statistics and research that were meaninful for cancer of the sinus cavity and his particular situation.

How is radiation going? How many treatments will he have?

He will have 33. He has 12 left.
No salvia or very little. I make him smoothies and broth type soups. We have a challenging two full weeks left.

I wish you all the best Julie. Thankfully your cancer is Stage 1, right?
I just posted my experience the last 7 weeks with radiation/chemo to treat my HPV 16 back of tongue squamous cell carcinoma. I hope the information will help you, and if you have any questions, please do not hesitate to ask.
I have found since my November diagnosis that we are all in this together!!