HPV P16 positive cancer

Hi. I went through the same treatment. Fortunately for me I’m not claustrophobic. I can tell you that the treatment did last only about 5-7 minutes and the table does shift slightly to give the radiation the exact location where to concentrate the waves. Amazed that they won’t prescribe something as I have heard other patients have been. I pray that you get something to aid you and wish you the best.

My tongue cancer was caused by HPV16. My recommended treatment is chemo therapy and 35 radiation treatments. I had my first chemo treatment yesterday. I had my radiation mask made covering my head down to shoulders. This was the worst thing that's happened to me since being diagnosed with tongue cancer. I have claustrophobia and I started freaking out. Near the end of the mask run through I started trying to get the mask and mouthpiece out and calling for help. Finally that was over only to be told I had to do this one more time. I explained about my fear to the nurse who basically said nothing can be done just do it. Since my treatments will probably start in two weeks I have made requests for a sedating drug such as valium. I was flatly turned down and said it's only 5 minutes deal with it. I can tell you after that 1st day (yesterday) I was physically shaking and could barely walk. Unfortunately this was the one day I did not come with my husband. I am dreading my next radiation treatment. Did anyone out there have similar experiences and if so what did you do?

It is amazing how many people have very similar issues to mine. Throat cancer to radiation/chemo to neck dissection to throat damage from radiation to feeding tube to recovery to ongoing treatment. It is helpful to know that others have gone through it so there s a process and experience. My cancer is chronic, but your testimonies keep me positive.

My HPV+ cancer was diagnosed Nov 2022 when I had a lump on the left side of my neck. Biopsy was inconclusive so had surgery to remove it and came back positive for cancer. Next step was a left modified neck dissection which removed 32 lymph nodes all negative. Had exploratory robotic surgery at the same time which identified the primary tumor in the left tonsil. A month later a full TORS ( trans oral robotic surgery) to perform a radical tonsillectomy and remove tissue from the base of my tongue. That was 5 weeks ago and I’m now exploring options for radiation to my neck and chemo due to the original spread to one lymph node. The surgery was a success and there were clear margins so all the tumor was removed. Also my NavDx blood test came back clear which indicates no tumor remains. I’m back to eating most foods with the help of a speech therapist and looking for the radiation treatment best for my situation that will have the least side effects. Please know that HPV cancer is very responsive to treatment and while the treatments are tough the outcomes are very positive.

I was diagnosed exactly the same in May 2022. Doctors completed exploratory robotic surgery to identify the small group of cells on the base of my tongue and a needle biopsy of the mass in the right side of my neck throat area also came back positive. I completed 7 weeks of radiation and chemo treatments this past summer. I was cancer free in November 2022 based on blood work / NAVDX testing.

We are in Canada. His treatment was at BC Cancer
Centre in Victoria BC. We have nothing but wonderful things to say about his team. All went like clockwork and we are in the recovery stage. He was offered 3 rounds of Cisplatin, but with only at 1-2% uptick to the 85% positive results they gave him. He is 70 and declined the chemo.

Where did your husband do his treatment? My husband was just diagnosed.

The tumor in my neck was 6 cm ... and yes it was in the lymph nodes in my face. And the radiation actually helped im cancer free.. but it also was in my voice box going down my throat .only down fall reason why mayo clinic ..because I have so much scar tissue in my neck ..now I need my cartroid arteries opened .

How did they define you as stage 4 had it metasitisized? How effective was the radiation for you ?

I went to ctca in zion Illinois.. I still have my voice box no disfigurement I just have bad side effects. I had to have the valves in my heart replaced and I have trouble swallowing and I ended up with 2 autoimmune diseases lupus and MS ..I did for radiation and chemo get a threachea and a feeding tube and a port ... but said they all came out after my treatments.. they did like 6 months after I was done.. I was stage4