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Hi all,

I’m pretty new to this oral cancer journey, although I started it a long time ago. I’m only 36 but have been monitoring patches of leukoplakia on my tongue for about 9 years with my dentist and oral surgeon and I’ve been biopsied 3 times. My prior biopsies came back all mild dysplasia & hyperkeratosis but benign. My latest biopsy however in November 21 showed carcinoma in situ, technically stage 0 oral cancer. I’m lucky it’s nowhere else right now, and my stage is early compared to when many find themselves with cancer.

I was referred to an ENT who specialized in oncology and on February 28th, I had a partial glossectomy. I had about a 5cm spot removed from my right side of my tongue and they used alloderm as an allograft instead of taking a graft elsewhere in my body. Surgery went great, no complications and all the CIS got removed, but I will probably have another procedure to remove the rest of leukoplakia that isn’t cancerous yet that is more toward the floor of my mouth.

I’m doing okay on healing, thankful for pain meds and liquid food and my support system around me.

But I’m wondering a few questions:

1) Anyone else have experience like this out there? I feel so alone and like grateful it’s not more advanced cancer but it’s still cancer and I feel lonely and am trying to find someone who understands and has been here before.

2) Has anyone else had an alloderm allograft before? What was your experience with it? Did yours begin to taste disgusting as the swelling goes down? Does it fall off eventually? I’m thankful for the option of using this instead of needing my body to heal elsewhere.

3) Anyone else think their oral cancer came from HPV? My surgeon is testing the tissue they removed, but it wouldn’t change my course of treatment. I’ve never used tobacco and very rarely drink, so HPV is likely the culprit. But I’m vaccinated against HPV and get regular Pap smears, so I am unsure how when and how I would have got it. Interested in hearing other stories out there.

Thanks all for sharing and wishing everyone who reads this the best.
- Sara

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Hello Sarabear,

So sorry you are going through this but you seem to be on top of it. I had a partial glossectomy (took the right half of my tongue) but was stage 4. They also took all my lymph nodes on that side of my neck. I had a graft to repair the tongue, trach tube, feeding tube and radiation for 30 days. So, some of below is familiar to me but much of what you are going through is new to me. It's a long recovery and I learned to judge my improvement in weeks and months but here I am a few years later living a full life. I still have some issues but I working full time, speech is good (small lisp), eating most foods (no spicy, no alcohol) and playing just as hard as before.

Like you, I was never a smoker and only a social drinker. I was diagnosed at 52 years old. But, I do know a woman in my small support group who was in her mid 30's. I suspect mine is HPV related but never really pushed to find out as I don't think it would change anything for me at this point.

I am sure others will chime in on the other items you asked about. Glad you reached out here. Lots of helpful people and support. Hang in there.

Best
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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I can 100% relate to the lonely part. I was stage IV but it doesn't seem to matter what stage. Cancer is cancer. For myself, I have good family and friend support but it was still extremely lonely. I almost feel it's normal to feel lonely. Truly hoping things get better for you, it's a struggle but things will get better.

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Looks like others have been prompt to reply so I will only add a little about etiology.

While everyone thinks of the three main causes of these cancers, tobacco, alcohol, HPV, they often leave one out that causes about 10% of anterior of the mouth cancers, particularly on the mobile tongue. That is etiology is unknown, but most likely a genetic frailty that predisposes individuals to these cancers. There doesn’t seem to be any shared lifestyle risk factor in people that get these which can be identified as of yet. They occur most of the time in women, and in pathology show none of the indicators/markers of the other causes. They unfortunately are a recurring cancer more than other causes. So it is very important to stay vigilant into the future and get regular screening to catch anything at the earliest possible moment. It is relatively uncommon to have hpv16 cancers occur in the anterior of the mouth. They favor the tonsils and base of tongue.

While it is a good idea for all of us, and even the general population to self screen at home, which is not difficult, you need a simple intra oral light source to do this effectively. Please check out the website www.checkyourmouth.org where there is a short video on how to do this. B


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Hi all,

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).

Take care,
Sara

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