[daggersandscars]

I was diagnosed and successfully treated for HPV+ oropharyngeal cancer in 2023. My treatment results were almost perfect, from a clinical perspective. I had transoral robotic surgery to remove the tumors in my mouth / throat, neck dissection to remove cancerous and non-cancerous lymph nodes, and radiation to treat the area after cancer was found to have escaped the lymph nodes.

If I were 10-ish years younger, I wouldn't have gotten cancer. I was likely exposed to HPV in my early to mid 20s, where it hid in my tonsils for decades.

In the US, almost anyone under 45 can get vaccinated. Please do. As another comment points out, they protect against multiple strains. It's unlikely you've been exposed to all of them.

While HPV+ head and neck cancers are more easily and more successfully treated than HPV- ones, I do not recommend getting cancer.

From the outside, I look like a normal person of late middle age. The two incision scars I have look like neck folds -- literally no one, including medical personnel outside of the cancer world, notices them.

From the inside, tho:

* Can no longer taste sugar, salt, chocolate, and a host of other, smaller things. Most other things have less taste and pretty much nothing has a flavor after a few bites. For some, this eventually stops -- I'm unlucky. (Radiation destruction of taste buds)

* Significantly decreased saliva to the throat. Cannot eat without some liquid. The saliva that forms is thicker and sometimes causes problems swallowing. Some get this to the mouth and to a larger extreme -- I'm lucky. (Radiation)

* Dental trauma, including teeth extraction / root canal / deep fillings, may cause spontaneous bone tissue death in the jaw. (Radiation)

* Permanent sensation of partial numbness centered around my left ear and cheek. Touching that area produces a pins and needles sensation. (Neck dissection)

* No feeling in a stripe about 1.5" (4cm) wide where the neck dissection scars are. (Neck dissection)

* Changes in speech quality. These are not clinically significant but changed my voice from one people enjoyed listening to (asked to do voice over work, complemented, etc) to just another voice. (Surgery)

* Tinnitus increased significantly and hearing has worsened. I was not given chemo, the normal cause of hearing loss. (Unsure cause)

There's more, but those are some of the highlights. Get vaccinated, get your kids vaccinated, etc.

HPV- head and neck cancers in the US are dropping as people quit smoking. HPV+ are on the rise for now, but will drop as the generations with vaccinations get older.

I'm traveling today, but will look at this later today if anyone has a question to ask.

[seth323]

I am now 31, was diagnosed stage 4b oral cancer in 2022 when I was 28 - underwent the same general surgery as parent comment to remove positive margins left after the initial biopsy of my tongue and almost all lymph nodes in the left side of my neck. I also underwent 6 weeks of radiation. I was not HPV positive and don't smoke or drink so doctors are still clueless as to why I developed cancer.

Can confirm radiation is brutal and almost indescribable. Everything tasted bitter and sulfurous for 6 months, even water. I had a feeding tube placed after not eating for 3 weeks and losing 25% of my body weight (roughly 35 pounds). I was days away from death. I would wake up every night with blood pouring out of my nose and was not able to open my jaw for almost a week. 2 years later, after many iterations of lymphedema, physical and speech therapy I am still in significant pain every day and cannot even swallow my own spit unless I am on narcotics around the clock. That in itself is a nightmare because finding a provider that will prescribe a steady supply of narcotics instead of pushing expensive procedures so they can get rich is difficult. I am routinely drug tested so I can get medications that prevent me from starving to death. It is humiliating.

I am lucky in that my speech is virtually the same as before treatment which is rare, and my taste has returned to normal. I would die of starvation without narcotics and I don't know if I will ever gain the energy and stamina to have children, and yet I still consider myself extremely well off compared to other survivors.

Please get vaccinated for HPV and lower your risk factors for oral cancer in general. It is one of the worst late stage cancers to recover from. You may be alive after the treatments but radiation will destroy your quality of life and you will likely be dependent on doctors for basic tasks for a long time, if not the rest of your existence. I don't want to think about what my life will be like if my cancer ever returns.

[TZubiri]

Wow that's brutal. I always thought of these cancers in terms of mortality, but for every lethal case there have to be dozens of hundreds of people that are non-lethally damaged by the disease.

Congratulations on surviving!

[Spooky23]

Whenever you read some antivax/antimedicine nonsense online, watch the words… you’ll always hear about fatality.

Keyboard warriors don’t need to think about pain, suffering, and misery.

[nick_]

An immediate family member of mine lives with the same diminished quality of life as you. It is very significant. I wish you the best.

[rsync]

"In the US, almost anyone under 45 can get vaccinated."

Can you expand on this ?

Why can't people over the age of 45 be vaccinated ?

Is that restriction "on label" ?

[daggersandscars]

The CDC does not "recommend" vaccinations over 45, mostly due to previous exposure. I suspect one can find doctors willing to do the vaccination for those over 45, though one may need to convince them.

Whether this is useful depends. HPV 16 and 18 are the "high risk" strains most associated with cancer. Depending on your sexual history, getting vaccinated at 45+ may be useful. Unfortunately, there's no reliable test for HPV 16 and 18 for those who have already had it.

https://www.cdc.gov/vaccines/vpd/hpv/hcp/recommendations.htm...

[astura]

The FDA approval is up to age 45, any use after 45 is off-label. Off-label prescribing is perfectly legal, but it might be difficult to find a medical provider willing to do it. You might have the best luck going to a place that specializes in sexual health (like Planned Parenthood).

[Avalaxy]

Wow, thanks for your story. I'm terrified of getting this too, and I've been wondering what it's like.