First off - thank you so much for the follow up replies. This forum has been so helpful to me for knowledge and understanding, and for seeing so many fighters on so many different journeys. For everyone who’s taken the courage to post, reply, or just read anywhere on this site, know I’m thinking of all of you.
I just wanted to follow up on my initial post a little while later with some updates, wanting to make sure it’s documented for others down the road one day if they are in a similar position. I was in kind of a really dark place when I wrote that with lots of pain, and have a few more answers now to some of my questions.
A few quick health update first.
I am healing still pretty well from my partial glossectomy, and at my post op appointment I found out that I actually had stage 1 squamous cell carcinoma in the largest lesion of my tongue. My biopsies had revealed stage 0/carcinoma in situ, so this was a surprise and I’m even more grateful this was caught early. I have two additional lesions that they will remove with a second procedure soon, but those are still CIS so my surgeon wants to wait for me to be healed up a little more. I’m sure the second procedure will be in the next couple months. At 3+ weeks post op, I have no more speech issues, no more pain in my ears/neck/throat, and just pain on my tongue remaining at the surgery sites as where it’s still recovering. Additionally, the cancer they removed and the CIS that’s still there is shallow so as of right now, no radiation is planned.
As for my questions, here’s things I learned:
1) Loneliness sucks. But I’m in a lot better head space now as I can communicate almost back to normal and have been able to see friends and family again and have had a lot of visitors. Reading through this forum has also helped me so much, and also finding others like me on social media like searching #tonguecancer on TikTok and a Facebook/Instagram group called YoungTongues, which is a group for younger people around the world in their 20, 30s, 40s, 50s, who have been diagnosed with tongue cancer. Connecting with others who have tongue cancer reminded me I’m not alone.
2) My Alloderm allograft on my tongue fell off about 2 days after making that post, so it stayed on my tongue for about 8 days. It was placed on my tongue with dissolvable stitches and according to my doctor, was meant to be more of a bandaid to just prevent the surgical site from infection for the first week or two. The terrible taste in my mouth was from some of the stitches dissolving and the layer of antibacterial paste that was underneath the alloderm on my tongue. It was really gross for about 48 hours, but then went away.
3) Lastly, I’m HPV
negative. So I’m in that fun 10% category mentioned by Brian in which they have no idea where this cancer came from as I am only 36, never have used tobacco, and hardly ever drink. I am quite nervous that means one day after surgeries are all over that it will come back and I’ll lose more of my tongue and need radiation, but I’m trying not to manifest bad things and focus on the positive right now. I also did think that would make me more upset knowing there’s no cause they know of, but it actually makes me more passionate in wanting to share my story and help other folks, especially younger ones who think they have no risk, realize all the screenings you need to do. When I go back to work next week, I want to reach out to my HR folks with April being an awareness month for head and neck/oral cancer and see if I can share my story with my 200k+ colleagues (as I work for a major aerospace & defense company).
Sorry for the long post, just wanted to follow up and share and offer this to anyone who may read this: please reach out if you relate to anything I’ve shared. I’m lucky to have a great support system to help me bounce back quickly, and if you need any emotional support, I’m just a message away. And if you ever need to meet with some in person, I live in Iowa and am getting my treatment at the University of Iowa Hospitals & Clinics with Dr. Kristi Chang and would be more than happy to meet and grab a coffee sometime (or smoothie since well, tongue cancer lol).