HPV P16 positive cancer

Hello,

I mirrored your experience. I had been complaining about my throat 2 years prior to being diagnosed with oropharyngeal cancer. I had been scoped many times as well with no definitive answers. What caused me to not continue to see the ENT, was that he reassured my during one of my scopes that it wasn't cancer. I would like to share with everyone, to continue to request scopes and be vigilant, even when you are comforted by good news. I too had a sore throat and was coughing up blood for months. Yet, I was given a clean bill of health. It's a mystery to me how both of us, and many others are missed. Hopefully, there can be further learning so we don't go un-diagnosed.

Hello,
I was diagnosed with Stage 4 oral cancer in 2009. I did the standard treatment of 7 weeks of chemo cocktails and radiation. They told me I was HPV positive, the MD said the good thing about being HPV positive was the success rate was better than being non-positive. I’m not sure if I was HPV 16, I believe so, but would need to check my paperwork. I had seen multiple ENTs for more than 2 years without a diagnosis. I had a chronic scratchy throat that I could not seem to clear. I had been scoped so many times I lost count. Then one day I woke up with a golf ball size lump on the side of my neck. The MD’s all agreed that was not good.

My treatments were the same as you Calenbd. That was 19
months ago. I was cancer free for 6 months. Then it went to the top of my right lung. That piece was removed with surgery. No other treatment.
Now 4 months later I have another hot spot at the bottom of the same lung. Going for a biopsy in 10 days.
Cancer 3 times in 19 months.
Very upsetting. How can I keep it from coming back ???

Hello,
I had HPV SCC in my tongue and one lymph node. I’m in remission now since my treatment ended in September, 2022. To answer your question, to my knowledge, a biopsy is the only sure way to determine if the lymph node is cancerous. My biopsy showed it was positive for cancer. The treatment for my cancer was radiation, both the tongue and the lymph node, not removal by surgery. I hope this helps. I pray you have complete recovery at the end of your treatment journey. God bless.

I have HPV16 tongue cancer. I was diagnosed in September 2022. I finally had a biopsy operation to confirm it was cancer. The plan of action is 7 chemo treatments and 35 radiation daily treatments. At this point not quite half way through. The radiation is the worst. Saliva glands are drying, nothing tastes good and normal smells are really unpleasant. I have lost 23 pounds but doctors do not want to put in a feeding tube. The reasoning is because you will give up trying to swallow. I guess if you don't swallow eventually the ability to will stop. I wanted to give up completely and let God's will take over. My husband and family would not allow me to make that decision. I hate to say it out loud but I pray for a miracle or and end to it all. Just starting on an anti-depressant so hopefully in 3 weeks when it kicks in my mindset will be better.

I had 35 radiation treatments and 5 chemo all at the same time. RDiation was 5 days a week. I’m 15 months out from treatment. But drinking water is the worst ! My saliva is a constant sour taste. I can only drink water that has a powdered flavor in it.
Food is still such a struggle. Sometimes it won’t go down when I swallow. My mouth and esophagus are too dry. I’m wondering by now is this permanent ?

I have HPV16 tongue cancer. I was diagnosed in September 2022. I finally had a biopsy operation to confirm it was cancer. The plan of action is 7 chemo treatments and 35 radiation daily treatments. At this point not quite half way through. The radiation is the worst. Saliva glands are drying, nothing tastes good and normal smells are really unpleasant. I have lost 23 pounds but doctors do not want to put in a feeding tube. The reasoning is because you will give up trying to swallow. I guess if you don't swallow eventually the ability to will stop. I wanted to give up completely and let God's will take over. My husband and family would not allow me to make that decision. I hate to say it out loud but I pray for a miracle or and end to it all. Just starting on an anti-depressant so hopefully in 3 weeks when it kicks in my mindset will be better.

Your story is very interesting. Help me understand the 8.5 hour for a biopsy. My ENT used a tongue depressor and flattened my tongue where he could clearly see the tumor and reached back with tweezers and tore off a piece for a biopsy. He admitted he was surprised how big a piece he got.

We were also not told about long term side effects. The Rad Onc told me two weeks after treatment I would start feeling much better. That was bull! It actually got worse. Much worse. Only 2 months after chemo and radiation I developed a small area of osteoradionecrososis of the left jaw. I jumped on getting a second opinion with the Mayo Clinin and I uprooted my life and moved into a hotel in Rochester for two months to do daily hyperbaric oxygen treatments. I truly believe it made the dead bone fall off and then allowed healthy tissue to grow and prosper. It was amazing. Now what else don’t I know that might occur. Even if it doesn’t happen I’d like to know what could be possible so I can research, look for signs, and look at treatment options so I’m ready at the time. I don’t like surprised when it comes to my health.

Sounds like you are doing well, managing around your new life. Wishing you continued success.

Hello anybody10. I hope and pray you are doing well.

To be blunt the oncologists (both of them) were not transparent and when asked pretreatment of side effects and long term outlook, they remained silent. My second ENT was a bit different, but not to get caught up in a issue he directed me to do a little web searches on "squamous cell carcinoma base of tongue". The first ENT botched my first biopsy (not obtaining a proper sample) almost 8.5 hours on the table. His ego was larger than God, and atrocious bedside manner. He referred me to an associate ENT and this ENT was helpful with finding and scheduling everything. He and his PA was with us every step of the journey.

The collateral damage: Feeding tube was constantly irritated/close to infection (the surface under the PEG tube shield) (5 months). GERD was so bad that I was taking honey to reduce the GERD. So with the GERD they put me on omeprazole 20mg daily. Later while talking to a chiropractor he mentioned that the thick ropy phlegm that I could nebulize in 3% saline reduced glutathione (1/5 teaspoon) one or twice a day. This did the trick, no GERD and cuts the ropy phlegm so now when I cough it breaks up. About in week five I started to have autoimmune issues. I came down with plaque psoriasis and it felt like I was buried in an anthill. Four months after treatment ended I contracted shingles. A week after my last treatment I had second degree burns to the back of my head and neck. My neck became so swollen (as big as my head) I tried to contact both of the Oncologists but they were not to be found. I contacted my ENT and he said get to the ER. Five hours in the ER and every 10 minutes they wanted to do a tracheostomy because they were afraid that I was going to quit breathing. At 4.5 hours into the ER visit, they finally talked to my radiation oncologist and he told them to release me and for me to come in Monday morning so I could be evaluated. Lymphedema (head/neck) the oncologist says that I am the worst case that he has seen in 15 years... At this point he walks out of the room, and the head nurse starts making some calls and getting me to a physical/occupational therapist that deals with lymphedema. In the interim, someone told me to contact a acupuncturist and gave me a name and number. The first visit at the acupuncturist he got right to business, 45 minutes later I was on the street and having some Vietnamese for lunch with my wife. My wife looked up and gasped (I am thinking the worst) then she says your neck is going down. Lots of visits and exercises at PT. Finally insurance approved a lymphatic pump suit for use twice a day for life. Radiation has destroyed my lymph glands on my right side as well as my salivary glands. I stopped drinking/using anything with fluoride. Purified water is my staple something with a pH of 8+ or higher. Have your vitamin D levels checked and keep active. Your taste buds may never come back. You might find that the first bite of something you can taste it, but the fades with each and every bite. Try spicy (not bland) foods. Fried foods will coat your tongue causing many issues from taste and reflux. I now also sleep on a wedge. Checkout the support groups with your Oncology facility and their dietician. There is so much to cover, so if you have questions, ask the group. I have for the most part ended my relationship with the oncologists and now use mostly alternative health choices. We will keep you in our prayers and thoughts.

I have HPV16 tongue cancer. I was diagnosed in September 2022. I finally had a biopsy operation to confirm it was cancer. The plan of action is 7 chemo treatments and 35 radiation daily treatments. At this point not quite half way through. The radiation is the worst. Saliva glands are drying, nothing tastes good and normal smells are really unpleasant. I have lost 23 pounds but doctors do not want to put in a feeding tube. The reasoning is because you will give up trying to swallow. I guess if you don't swallow eventually the ability to will stop. I wanted to give up completely and let God's will take over. My husband and family would not allow me to make that decision. I hate to say it out loud but I pray for a miracle or and end to it all. Just starting on an anti-depressant so hopefully in 3 weeks when it kicks in my mindset will be better.