HPV P16 positive cancer

Hi Newtonguecancer. My research and experience revealed that knowing if your radiologist has perfomed
that specific treatment in the past, will give you comfort. Secondly, going to hospital like Mayo, UW Madison who does this all the time can also be beneficial. I hope that you have done your research and have asked your medical team specific questions about what to expect during your journey. I will pray for you and ask for your speedy
recovery. God Blessed!

I am hpv 16 head and neck cancer and it’s in at least 3 lymph nodes on left side. I have neck dissection surgery scheduled at John’s Hopkins for Friday not sure what to expect from the surgery or how I will feel after. Want to start radiation asap after the surgery. My cancer was on the left side of tongue.

Prepare for the worst. Hope for the best. This trip is not easy for anyone and recovery is much longer than a broken bone or most surgeries.
HPV 16 or otherwise, it is still cancer, the cause of which doesn't make it any easier to deal with. Twenty years ago we only found out about the HPV link. Prior to that it was still cancer.
This is a fight you must fight and a fight you and your team can and usually do win. Hopefully twenty years from now you can help out others fighting this as I do. Or better yet we will have finally conquered this literal pain in the neck cancer. At least you are at one of only a few hospitals / clinics in the US that is well versed in handling your cancer. Good luck and God speed to recovery.

They link to HPV+ cancer head and neck provided for a different treatment plan than from head and neck cancer from risk factors, ie smoking and drinking mainly. It was found that HPV+ does not typically spread below the neck, and responds very well to radiation therapy. Outcomes are favourable. All I can say is thank God for the vaccine programes in schools to vaccinate for HPV at a young age so that the next generations can be spared from cancers caused by HPV. Not only head and neck, but cervical and other cancers as well that are linked to HPV.

Just had surgery at John’s Hopkins to remove all of he nodes from zones 1 through 4 on left side. The surgeon said he was able to get all of the nodes that were suspect. Now I need to get radiation asap how quickly can this happen ? Also they identified hpv 16 in my original tongue cancer so is this a more favorable outcome. I got hpv when I was 19 and I am 52 now. But it doesn’t show up in my blood anymore. Can tongue cancer be caused by hpv ? I have heard different opinions on it

My understanding is that all oropharyngeal cancers can be caused by HPV. We were also told that the biopsy is the only way to determine HPV involvement of the cancer, which makes sense why it wasn’t in your blood. Hope you get your radiation as soon as possible. Waiting was very stressful for us as well. It sounds like you are in good hands.

What do you think the earliest I could get radiation is ? I am hoping we could start in 2 weeks post surgery if possible

I to have been diagnosed with positive HPV16 cancer on the back of the tongue and a tumor on the voice box. I am waiting for an appointment to find out where I go from here. It's getting more painful daily with a constant sore throat, headache and ear pain. I am 79 and will not go through any disfiguring surgeries. I would love to hear from anyone who has been through this. Please don't mince words I want to know what to expect.

When they can start radiation is a question for your doctor. I wish you well. Radiation is not easy but you will get through it. My husband is 4 weeks post radiation and his recovery is going well. Neck has healed on the outside and is eating better and better each day so the inside is also healing. His taste is starting to return. Use all the tools they suggest. Magic mouthwash, salt rinse, vaporizer and regular schedule of extra strength Tylenol. Boost powder was his favourite to supplement his caloric intake when food was too uncomfortable. Kraft dinner as well. Count calories and proteins to make sure you are getting what you need. Do the exercises the speech language path will give you. It’s all important. We kept a weekly planner sheet on the counter to check off all things daily. It was a valuable tool to keep him on track. I wish you well. Let us know how you are doing. The doctors and nurses are highly skilled and their goal is to see you well.

They typically would do a surgery on your tongue and then radiation. Unless you can’t have the surgery.