r/Eugene • u/cedar212 • 5d ago

Oral cancer Moving

I'm 70, but when I was 67, I was diagnosed with tonsil cancer. It is a sexually transmitted disease which kids are vaccinated for now. I received 10 weeks of radiation and 7 sessions of Chemo. I lost my taste. The things I loved like beer, chocolate, sushi and foods that I loved to cook tasted repulsive. I continued to cook because as a single Dad I still had 2 kids at home. (I didn't have children untill I was 46 and then 48). While the radiation saved my life it wiped out my thyroid, constricted and scarred my throat muscles, and scarred the muscles which control my opening and closing of my mouth. It also led to the extraction of 8 teeth prior to treatment and 2 years later at 70 all of my teeth. I'm now in the process of getting new teeth which takes about 9 months. But..... the bright side is, I got most of my ability to taste back. It's like heaven. Looking to hook up with others who have gone through this. BTW. The thing that kept me going and my focus was moving to Eugene Oregon from Illinois. Moved here a month after I got the feeding tube removed from my stomach. Best decision I've ever made. Love you guys.

350 Upvotes

95% Upvoted

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u/echobrishell 5d ago

The HPV vaccine is overlooked for how important it is

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u/Blu3Ski3 5d ago

💯 HPV is the leading cause of not one but many types cancers, including cervical, throat, anal, and penile cancers

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u/echobrishell 5d ago

My mom made sure I received the vaccine as soon as I could when I was a child, which I am very grateful for.

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u/Critical_Concert_689 5d ago

overlooked

When the vaccine became available and was broadly recommended for women - it was denied to all men by insurance and disapproved by many doctors. IIRC, men STILL can't even get checked for HPV.

...Where is green Mario when we need him?

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u/Cooldrmoney1999 5d ago

They are just starting to screen for oral cancer at dental offices via the VELscope, they would then biopsy to check for HPV. Kinda late in the game, but it's cool that it's starting to happen.

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u/AllGrand 4d ago

Green Mario 💚💚

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u/JenniBean10 2d ago

Yes I got it at 40 years old since I had HPV in my late 20’s. Glad I was able to do something to give myself a fighting chance in the long run.

u/Able_Sun4318 5d ago

As a chemo infusion nurse I'm glad things are looking up for you now! Willamette valley cancer institute offers support groups of all kinds, active cancer or not

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u/claussen_dynasty 5d ago

You also don’t need to be a patient of WVCI BUT you will need to sign a confidentiality agreement and call the social workers to sign up

u/Own_Customer_6800 5d ago edited 5d ago

I have HPV throat cancer (where tongue attaches to back of throat) 35 radiation, 7 chemo. I was diagnosed April 2024 and I’m 57 YO. My ENT doc says 20 years ago it was hardly talked about, now 95% of cases he sees are this. He also tells me it was brewing in me for like 30 plus years! I still have feeding tube. Things taste wise are out of sync big time and it’s a bummer. I keep trying things, some things are tolerable but like you said, most are repulsive. I feel like maybe I’m turning a little corner. I hope so as I’m over the tube and just want to be “normal” again! Dry mouth 24/7 is a bummer as well and heard that is probably gone forever. How long till you got the taste back? Life is hard enough, I wanna taste! My brain knows the taste, my mouth doesn’t remember lol. Thanks for sharing your story, you totally get it. To all others………get the shot! It’s THE most preventable type of cancer.

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u/cedar212 4d ago

DM me anytime. Drink really cold water. I started steaming things like broccoli and brussel sprouts. I put lots of butter on them. Sometimes soy sauce. The reason was to wake up my taste buds. Coffee. First thing I could really taste was coffee. I made it a dessert. Cream, lots of sugar...lots. Then, I started cooking, even though I couldn't eat it. The aroma therapy helped me. Look it up. There's a famous chef in Chicago, whom had tongue cancer and got his taste back over 5 years. Don't give up.

u/Euphoric_Starlight 5d ago edited 3d ago

I've been putting off getting the hpv vaccine because it's insanely expensive. Because of your post, I just made an appointment for my first round. So sorry for what you're going through, and thank you for sharing.

Eta: I got my first dose today at target for 169.50 using this good rx coupon https://www.goodrx.com/gardasil-9?offerId=djA6NDA3MDM6NjoxOjQ0LjA1NiwtMTIzLjE1

Obviously, it's not the most ideal/clean/professional place to get it done. It wasn't a bad experience, though. Plus, it was so much cheaper and convenient.

For my next two doses, I plan to utilize this program, and I urge anyone else who needs assistance to use it. https://www.merckhelps.com/GARDASIL%209

You must be within the ages 19-45 and make less than 60k as an individual. It also must be administered by a physician, physicians assistant, nurse practitioner, or a certified nurse midwife. You will likely need to coordinate with your provider, and you will be required to provide proof of income. So you'll have to jump through some hoops, but you will get the vaccine for free.

The merck program can also work if you have insurance that won't cover the vaccine in certain cases.

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u/KalLindley 5d ago

Im surprised it’s expensive. Gotta be cheap somewhere near you…?

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u/indecisivedecider319 5d ago

Planned parenthood provided it to me at no cost when I was younger. Insurance should cover it entirely, or a place like planned parenthood can.

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u/Euphoric_Starlight 5d ago

I make just enough not to qualify for assistance. Being self-employed, it winds up being cheaper to just pay for it than to pay insurance premiums every month.

I'm absolutely open to help finding resources!

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u/tyedye_tortillachip 4d ago

Yes definitely try planned parenthood. I was uninsured and needed a biopsy due to HPV. They give self paying customers a huge discount (I want to say it was possibly 40 percent but I might be off on that) if you pay in full at the time of service.

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u/Euphoric_Starlight 4d ago

When I went last year for a pap they recommended i get it & i believe they said they could do it for $250. Cvs is possibly cheaper if good rx works out. There is a merck vaccine assistance program I'm looking into tomorrow. Will update.

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u/cedar212 4d ago

Thanks. Yeah it's not something you want/or need to go through. Bless you

u/xihua222 5d ago

Thank you for talking about this, it’s not talked about enough. Safer sex practices and HPV vaccines are SO important.

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u/cedar212 4d ago

Thanks

u/SatireStarlet 5d ago

That's amazing that you are finding a lot of support here. I'm glad you got your sense of taste back. That sounds awful to lose it. I don't have any experience with that. I kinda had weird taste things happening while I had covid. It was kinda the opposite of losing my sense of taste. For a couple of days things tasted strange and smells were overwhelming 🤔 I guess it was just because my nose was stuffed up but it was definitely strange

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u/cedar212 4d ago

Thanks for sharing. I had the Cancer for 2 years before it was diagnosed, because it happened during the pandemic.

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u/SatireStarlet 4d ago

Oh no 😭 I'm sorry. That sucks. I'm glad you are doing better now though 😊

u/Level-Tax-4019 5d ago

Several things...

Welcome to Eugene!! I am so happy to hear that you are doing better. Cancer is so terrifying, and throat/mouth cancer just amplifies that fear, IMO.

Thank you so much for talking about this, especially as a man. I have never heard someone talk about HPV from a male perspective. As a female, I thought males were simply carriers being nearly 53, which is disheartening.

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u/cedar212 4d ago

This STD cancer can be in your body for 30-40 years before it manifests itself. It's not too late to get vaccinated.

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u/MonkeyVicki 4d ago

Yes it is. They’ll only vaccinate if you’re under 45. Originally limited to under 25 I think? Whatever age it was, I was one year too old for it and yeah, I should’ve just lied. When they finally raised it I was too old for that too, hard not to take it a LITTLE personally.

That might be a U.S. thing but yeah anybody that can get it should get it.

u/starfishmantra 5d ago edited 4d ago

I work surgical trauma ICU (RN), and have had A LOT of patients with oral cancer come through. It's a rough surgery, and when combined with chemo/rad treatments it definitely can result in the loss of appetite, taste, and other sensory stuff.

I 100% encourage people to get HPV shots (now up to 45 y.o), and also seriously stop smoking, drinking heavily (even moderately), and do not chew tobacco!!! I've literally had people we've cut the tongues out of to save their lives, or remove entire sections of jaw resulting in a severely disfigured face. It's not worth it.

Also recommend you visit your dentist twice a year, as dentists detect and refer out a lot of oral cancer patients when they find signs of oral cancers.

Protect yourself! Get your shots, and also give them to your kids!

To OP, welcome to Oregon! I hope your health goes smoothly from now on.

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u/cedar212 4d ago

You're awesome for taking the time to respond and seriously you are a hero for choosing the profession that you are in.

u/rose_thorns 5d ago

My father had that same cancer, he moved in with me for several months while he went through & recovered from treatment. This was a couple of years ago now

He didn't lose any teeth, & had no throat muscle issues, but still has reduced saliva production & his sense of taste never got back to normal.

HPV vaccine is now approved for adults up to age 45! It's a 3 shot series & each shot has to be 2 months apart. So if you're at least 6 months away from turning 45, go get the HPV vaccine! I had to get tested first to make sure I didn't already have HPV.

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u/cedar212 4d ago

Thanks for responding. I have always loved to cook and thought that I was really good at it. After moving to Eugene, I started really looking at great recipes and more truly Gourmet cooking. I truly believe the "aroma therapy", helped me get my taste back. I do have to drink lots of water due to impeded saliva glands. Thank you

u/bespokerec 5d ago

Welcome to Eugene! It’s the best place I’ve ever lived and have called it home for 30 years this month. We are blessed with clean air and water and the people here are friendly and kind, generally. A vibrant music scene is a blessing for me, and there are lots of places to fly fish, hike, and enjoy nature. At age 69 I am happy and thankful to have survived laryngeal cancer (squamous-cell carcinoma) caused by HPV 10 years ago. I had radiation but no chemo, but still battled nausea for many rough months and have experienced some muscle damage related to the radiation. I recovered my sense of taste within a year. I was extremely fortunate to have had great doctors/oncologists and a very lovely nurse by my side through it all that I had the foresight to marry 37 years ago. I cannot tell you how thankful I am that there is now an effective vaccine for people to be protected from this (fuck RFK, Jr., BTW). I also survived prostate cancer surgery a year ago, so I am a two-time survivor (so far, lol). I live my life looking forward though and don’t think too much about cancer. Maybe it will appear in some form again or maybe not. But as my wife says, something is going to get us all (retired nurses tell it straight, lol) so we best live our best lives with the time we are given. Take care of yourself and good luck. Your kids will grow up in a good place thanks to you.

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u/cedar212 4d ago

Thanks for your response. I enjoy the same things as you, and living in Oregon allows me to fullfil my dreams. Yes, it's all downhill from here, age wise, but I'm not afraid. Thanks

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u/RefrigeratorsBaby 3d ago

Can I ask that your original symptoms were? I have a recurrent mucocele at the roof of my mouth towards my throat. It’s been coming and going for about 2 years. I’m in my 30’s and it just makes me nervous!

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u/bespokerec 3d ago

I had a scratchy throat that would not resolve. I went to an excellent ENT doc who found it with a scope. Not having any medical training, I would recommend seeing your doctor to rule anything out. It is always better if they can catch things early as there are many more options for treatment if there is a problem, plus if there is not a problem you can stop worrying about it. They caught mine at stage 2 and I did not require chemo. Good luck and feel better!

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u/RefrigeratorsBaby 3d ago

Thank you! I’ll get it double-checked!

u/bluecrowned 5d ago

I also moved here from Illinois. Nice change of scenery. I love it here. Glad things are looking up for you.

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u/cedar212 4d ago

What part of Illinois? What motivated you to move here?

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u/bluecrowned 4d ago

I'm from the southernmost tip of Illinois near the KY and MO borders. I moved here because my mom did and I couldn't find a job after losing my old one.

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u/cedar212 3d ago

Well the job market here is tough, but you're in a far better state than Illinois.

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u/bluecrowned 3d ago

I have had a decent enough job for the past 5 years thankfully.

u/jpr602 5d ago

Veterans aged 27-45 can get the HPV vaccine at the V.A.

u/ajcondo 5d ago

Thank you, thank you, thank you for posting your story.

What is considered high risk for cancers attributed to HPV — oral sex with an infected person over a long period of time? Or, could a one time hookup in your teens lead to a diagnosis later in life?

I can search the internet but I would rather hear from someone who has spoken at length about this with an oncologist.

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u/jpr602 5d ago

I'm a physician. (i) Females: cancers of vulva, vagina, and cervix. (ii) Females and males: genital and nongenital warts, anal cancer, oropharyngeal (mouth/throat) cancer. Respiratory papillomatosis in children. (iii) Males: cancer of penis.

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u/ajcondo 5d ago

Thank you for responding. To clarify, I’m wondering whether I need to worry about an increased risk of cancer because I had contact with a woman a few times v ongoing contact that lasted months/years?

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u/cedar212 4d ago

It could come from a one night stand. Generally speaking, I'm not a medical person, it can be in your body for up to 40 years before manifestation. Today, kids are vaccinated for it. But up to 45 yrs old you can receive HPV vaccination

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u/ajcondo 4d ago

Thanks. I just read that if you’ve been exposed then the vaccine isn’t effective.

So happy to hear you’re doing better now. Thanks again for sharing and for helping educate others. So important.

u/femsci-nerd 4d ago

Mouth, throat and neck cancers are the way HPV manifests in most men. We have to immunize noth populations BEFORE they become sexually active. SOrry to hear this happened to you buy glad you got your taste back!

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u/cedar212 4d ago

Thanks for replying. It means a lot to me.

u/redwoodray89 5d ago

Go YOU. Rooting for you!!!

u/Affectionate-Art-995 4d ago

Eugene rocks! Illinois has too much snow and crabby Catholics,my family members included. I'm not Catholic but a proud Italian. I'm sorry you went through that. Have you looked for a Cancer local group on Facebook? Or single parent group? If it were me I'd take some cooking classes to meet people, even though I know how to cook very well. Maybe volunteering will connect with others. The huge church downtown has great volunteer service if that interests you. Happy healing https://www.heartofeugene.org/

u/rockmeallnightlong 4d ago

Why isn't the HPV vaccine offered to older adults?

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u/starfishmantra 4d ago

Available up to age 45. If you're in your 45th year, you can begin the shot series.

u/Landuccd 2d ago

Honest question, I thought the gardasil shot only helps protect against four types of hpv? Does that mean that those are the only strains that cause throat cancer?

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u/cedar212 2d ago

To be honest I don't know. As far as viral cancer goes, I think so, but obviously smoking can cause throat cancer. But I know that you know that.

u/Sorry_Welder6199 4d ago

Right there with you, 5 years exactly on the 28th of December, I was told I was Cancer free. I had throat cancer they originally thought it was HPV but it was from smoking cigarettes and drinking alcohol. Either way, you and I had the same treatments including the extraction of all our teeth. I'm 64 and embarking on a brand new life, cancer, taste and tooth free.

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u/cedar212 4d ago

Well, I'm lucky that the VA is providing me with nutrition via liquid, and new dentures, but that won't be completely done till spring. How's your taste now?

u/Feisty_Effective_763 1d ago

Well, you don’t need alcohol, that causes oral/esophageal cancer so consider that, it would have most definitely made the cancer propagate!