HPV P16 positive cancer

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.

Yes I did say no surgery. I am an elderly women with no expectation of living for many more years. I don't have time to learn to speak again with a tongue flap. The doctors have chosen radiation and chemo as the treatment plan. I will give this a go and hope for the best. If the going gets to rough I will choose palliative care.

In my case, I had 6 weeks of induction chemotherapy (carboplatin) prior to the standard treatment of 7 weeks of chemotherapy (cisplatin) and radiation (35 sessions) due to the size of my lymph node tumor on my neck. I won’t sugar coat the fact that the side effects during the later stage of treatment were not pleasant. Throat pain, excess mucus, dry mouth and throat, and loss of taste and appetite were the main ones. In my case, I ended up with a feeding tube, which actually was a blessing, as I had lost over 40 pounds. It’s tough, but you can get through with the knowledge that it is going to save or prolong your life. My side effects now are minimal had hopefully will go away or improve over time. That are some loss of taste (it’s about 50% of what it once was) and dry mouth. I can live with these. I don’t know if you will get any or all of these side effects, but I would recommend you follow your doctor’s advice and take the medication that’s offered to help alleviate them. I hope this helps. Reach out anytime you have a question. Take care.

I am getting a PET scan on Monday with a follow up appointment with a radiologist. The plan is radiation and chemo. Please can you tell what residual side effects you are still experiencing? How long did your radiation and chemo last? Weeks, months or all year? I really would appreciate straight talk. So glad that your December scan showed no cancer. I am an elderly woman and have been through a lot of tough things in my life. This diagnosis just seems like one more thing I must endure when I know death is just around the corner

I am getting a PET scan on Monday with a follow up appointment with a radiologist. The plan is radiation and chemo. Please can you tell what residual side effects you are still experiencing? How long did your radiation and chemo last? Weeks, months or all year? I really would appreciate straight talk. So glad that your December scan showed no cancer. I am an elderly woman and have been through a lot of tough things in my life. This diagnosis just seems like one more thing I must endure when I know death is just around the corner

If the surgery is the primary treatment and you say you "will refuse surgery almost definitely", then how do you expect a good outcome? While the thought of surgery can be rather scary, it may be the best option.
HPV16 caused cancer is easier to eliminate but the notion that it is more "treatable" rather depends on your definition of that word. A successful outcome with five year success rate is vastly better in HPV16 cancer as opposed to standard squamous cell carcinoma but I believe you will find the treatments are much the same.
It will not be an easy road nor will life's plans go on as usual. This is going to take over your life for a bit. Your choice in the matter comes down to live or die. My dear wife who battles the damage of MS every day is fond of saying "Life is what happens when you are making other plans." At this point life has directed you to deal with this issue, regardless of any other plans you may have made. But I think I can speak for most of us who have put this in our past, this will be a battle you can win and a life changing event that can be considered in an odd sort of way, for the better. Good luck.

I was diagnosed with HPV16 positive in the base of my tongue and a neck lymph node in February 2022. In my case, chemotherapy and radiation was recommended as my best treatment options. My final outcome was good as my PET scan in December showed no cancer. I won’t lie that the side effects during treatment were rough and I’m still presently dealing with a couple of minor residual effects, but I’m alive. That being said, I would get a few medical opinions for the the best options and predicated outcomes before you rule anything out. I pray that you find the right treatment and eliminate this cancer. God bless!!

Hi, I was diagnosed with HPVp16 on 3 Jan 2017. My team offered the surgery and the 35 treatments of radiation BUT said it was my decision. I chose both and I am still alive today.
I just had my 6 year full checkup and results were excellent. The journey was very bumpy as well as smooth from start to now. I say this with one thought in mind, if I wouldn't have had
the node surgery I would be dead today. My belief was if you don't remove ALL suspicious
cells/nodes/etc., the cells have a chance of returning. I have no indication of any cancer as of today BUT I have never thought I am ever cured it is a day to day process. Removal is your decision as well are the consequences if you don't. I did and with the grace of God I am still alive today. Good Luck on your journey and my God Bless you.

I had all of my nodes removed 1 through 4 on the left side and they also sacrificed the internal jugular does anyone know why they do this ? One week later I just had a PET scan and CAT scan with contrast and there is no sign of cancer. The next step for me is to prepare for the radiation treatments. I am going to get that done through Sloan Kettering in westchester I was told that larger cancer centers had a better long term outcome than smaller facilities had anyone else heard this? I have some residual nerve issues one week out. The nerve that runs from the base of my head along my ear hurts quite a bit. Also I am having a hard time talking because my voice box on the left side isn’t working right. And I also have a small chyle leak. Has anyone dealt with these issues ? That being said after all I have been through I was excited to learn that I am currently cancer free does anyone know what this means for my treatment and long term recovery ? Thanks