HPV P16 positive cancer
Hello, I am reaching out to see if anyone in this group is diagnosed with HPV P16 positive cancer We have unknown origin and are being treated for head and neck cancer. Anyone else with similiar presenation?.
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Hello @ dc56
I agree, it’s unfortunate that we had to learn the hard way about oral cancer. Did they ever find the primary source of your cancer? Mine was not discovered until I was in surgery for the peg tube. When the surgeon came back she told my wife she found the primary source of my cancer, it was in back of my right tonsil. It’s hard to believe that two different ENTS did not think to look in back of my tonsils during the two year period. They numb you up to put the scope up your nose and down your throat, I’m thinking they must have some mirror with a light that would have allowed them to look in back of my tonsils. Unfortunately, it’s old news now, but if someone else has an unknown source of oral cancer, I would suggest you ask your ENT to look in the back of your tonsils. I understand there’s lots of places cancer can hide but it wouldn’t hurt to have them look there. Now that they knew where my primary source of cancer was I able to have targeted radiation to that area of my neck. It’s now 13 years post radiation & chemo, I still have my dry mouth and my taste came back slowly. After about two years I now have full taste. I had to crown what’s left of my bottom teeth and use a partial. I noticed thru the years my teeth were getting thinner & thinner between the teeth. I use lots of mash or sweet potatoes to help with the swallowing, fresh avocado works well to.
The most recent thing I deal with is this right neck gland that continues to swell up intermittently. Based on what I read it is know as Radiation Fibrosis. Apparently the neck muscles are now more rigid post treatment and don’t have the elasticity to snap back so well. It’s just something I learn to live with. Let me know if anyone else has the swollen gland issue as well, I hope this helps someone.
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.
I’m so sorry. I wish I know how to stop cancer. I’ve had it twice now myself. Prostate cancer 5 years ago and then the tongue SCC. All is I can say is keep fighting and doing what your doctors say. I believe in God and His power to heal. I’m not sure what you believe, but I am going to pray for you. Keep positive and lean on the ones you love.
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 ???
Do not give up! I had the same treatment regimen but I had a feeding peg. I also had a very persistent nutritionist that hounded me daily!
Yes, the throat can forget how to swallow but water throughout the day will give the throat movement!
I tried to eat by mouth and wasn’t able due to; the smell of all food made me vomit, throat was closing up, no hunger etc.
I was able to get oatmeal down after approximately 7 months and lived on that for about two years!
Now after 6.5 years and 3 Esophageal Dilations I still have a very hard time eating food. I found that country gravy along with lots of water helps get the food down.
Fight the good fight and win!
Me too, water is the worst. I need powdered drinks as well. I have noticed that milk seems to neutralize the sour taste.
I drink a lot of milk.
Still having swallow issues at
16 months out.
Also have a new tumor on the bottom of my right lung.
Biopsy in 2 weeks.
"You will give up trying to swallow" This advice is coming from an actual licensed medical doctor in the First World? I don't see starving to death as a better alternative than the chance to forget a primary life function. Even the least in medical school are still addressed as Doctor I suppose. My advice, change doctors and find a nutritionist.
Every day is a struggle with the lymphedema, ropey phlegm and the plaque psoriasis. We keep plugging along and praying for everyone in our life. As for the Cancer it was at the base of the tongue deep in the throat. Not visible without a scope and some incisions. Not accessable from the outside of the neck. If it comes back, I was told that they would have to take my jaw and resection of part of my throat. (Feeding tube for life). Not even going to contemplate life as a monster. I have made peace with my Maker. My wife understands and I love her dearly. The Bible states that God will never give you more than you can take. Chronic pain is is a every day issue, but God has watched over me. Many times throughout my life, I was at the brink of death, and I was spared. I guess that God and Jesus are not finished with my time and that I have some special task to complete?! Praying for all of you and your loved ones. Do good things for all that you meet.
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.
Hang in there. There were days I begged and pleaded with the doctors to stop the radiation. I have a lot of fillings and the scatter radiation was causing severe burns on the side and underside of my tongue. I wanted to rip out all my teeth. With only being half way through things unfortunately aren’t going to get better before they get worse. Most of us were likely in your place. I BEGGED to at least take a break from treatments. The doctors and nurses were cheerleaders. I had to trust them. I had a PEG tube placed before I started treatments hoping I wouldn’t need it. Well I needed it, but the darn thing caused me nothing but trouble. I couldn’t keep any liquid down. No even small portions. CTs showed things were in place, but as soon as I’d get a few mL in I’d start throwing up. This continued through my whole treatment. Even hospitalized a couple times because my blood counts and potassium and magnesium became a concern. Blood got slightly better, and I begged to go home. I could feel like crap at home. I made it through my chemo and radiation and lost 80 pounds. 195 down to 115. I had to be in grad school at that weight. Since I still couldn’t eat with it without the tube the doc put me on a TPN plan. Total parenteral nutrition provides all your nutrition with any added requirements (vitamins/minerals, etc.) through the same port used for chemo. That was tough. You wore this bag on nutrition attached to a pump that was on for 20 hours per day to start. Then down to 18 hours a few weeks later. And finally 16 hours for several weeks. While I may have gained a pound or two, the blood work looked more stable and I was finally able to eat a few bites of soup and some ice cream.
Taste has come back to a respectable level.
Hang in there. We’ve been where you are. Your type of cancer id very treatable. Some of the highest success rates. It just sucks to go through it. Give yourself 2+ years before I say you can see a change big enough to say there is measurable improvement. Although everyone is different. Let’s get you through your treatments. You can do it. It will suck. You’ll want to quit. But we’re here for you. On your last day of treatments wear a Wonder Woman tshirt and know you beat the beast. Ring that bell, sister! You will have deserved it.