HPV P16 positive cancer

Hi,
I believe they were removed from each side of my body because I had a cancerous node on each side. Specifically, in the pockets of each clavicle. One was slightly larger that the other.
I found them on my monthly self examination process and immediately decided to have them
checked. My surgeon decided to take more just to be sure that no other nodes had been affected. Even though, the radiologist had determined that the cancer had remained in just the first 2 nodes that were removed. Post surgery, radiation, day to day living was challenging but
I either did that or die. I chose the living path. Lingering effects after 6 years post treatment are:
throat always has a lump of mucus which must be cleared often, loss all but 2 of my lower set of teeth/ my dentist calls it radiation spray, all foods must be chewed to a very smooth/liquid consistency or I will choke ( or some will go into my lungs) you get used to it. Further, nothing tastes the same so I eat less, get full quickly and loss about 55-60 lbs since the start.
I hope that this helps you during your most difficult times. I personally from pray and God to be
my strong medicine. Either way, hang in there. Believe it or not things do get better!

Hi, I never had any pain, discomfort etc. I asked for options and they gave me the removal
plan and I said do it. 10 days later I knew the answer.
Unless the nodes are actually examined by a radiologist you will never know for sure.
Even the fine needle biopsy had questionable results BUT the removal was the only way
to know for sure. The beauty of that process was that if the radiologist found cancer cells,
the removal of those nodes and the other 39 was done at the same time. Thus, knowing the whole story so they could plan the very best treatment plan (ie no chemo because cells stayed in the 2 nodes) only direct high radiation.

Hi after the procedure how was your pain and what was the immediate recovery like ?

Hello, I would like to know how you are now?

Hi, after the initial surgery plus 2 weeks of intense direct radiation I had slight discomfort. I was still able to eat burger and fries :)! However, starting week 3 the increased pain journey began. I went on a feeding tube, that same week, because I could no longer eat. That was a good thing because there was no way I was to get anything of protein value down my throat. I live alone so at 65, weak from no nutrition and 60 plus lbs of weight loss I needed help, so I was put in hospital for 5 weeks. I had the tube put in Feb 2017 and removed Oct 2017. I said it was time to
move on and my nutritionist agreed. I stated in a previous email that my swallowing must be thought through before I swallow anything. Also, I can't eat everything only stuff that is soft/mushy. My saliva glans are fried so additional liquid is necessary. You get used to it and move on. I am still alive and very thankful one day at a time. God Bless and Good Luck!

Thank you for answering, I feel desperate, more than 1 year ago the discomfort began in my right tonsil and on my tongue. I have had several consultations but I feel that the doctors do not give me importance, I have various discomforts and I can see my abnormal right tonsil and it has some growths on it. I highly suspect the diagnosis but I don't have health insurance and I can't apply for any. On January 25th I have another medical appointment with a different doctor and I hope that she is different and gives me the correct medical tests, I am very distressed because it has been a long time and I have a small son. Excuse me for telling you this, I have no one to tell it to.

Hi Paul,
Thanks for asking. I can’t really complain, all things considered. In 2009, I’m diagnosed with stage IV Oral cancer at age 54, I was not sure I would see my next birthday. It’s not something anyone wants to hear, but I consider myself blessed, and not lucky to still be here. I can tell you now after 12 years my bottom teeth started to erode. My top teeth are fine. I’m guessing it’s due to the targeted radiation of my lower jaw bone. Anyway, there was enough tooth to crown them all, I just hope they don’t continue eroding underneath the crowns. If so, I will just have to go to plan B. For those suffering with dry mouth, I find Xylimelts and Therabreath
lozenges the work best for me. Just one Therabreath lozenger will keep me from having to sip a drink for an hour or more. I like that the Therabreath lozenges are individually wrapped. I use the Xylimelts for when I go to bed. I still have some trouble swallowing food due to the lack of saliva. So long as I have mashed potatoes I can eat anything, including a tenderloin. I hope this information will help someone out there. I wish this group was available to me when I went through my ordeal. If it was nobody told me about it. I think we can all learn from someone that may have walked that road before. Best wishes to all in the New Year.

Hi Pau84, no need to to excuse yourself from sending your email. That is why this site was
developed. I wasn't aware of this site until several years after my diagnosis. I wish I would have known about it sooner. The delay in giving you an answer to what is going on with your right tonsil, has to be very stressful. I am sorry to hear that you have no insurance. I was under the impression that the federal government have options available when someone is unable to get medical insurance. Be sure to make your appointment on the 25th and I look forward to hearing back from you with good results. Take Care and God Bless.

I met with surgeon today and I have 3 nodes just on the left side that stand out so the plan is to take out all of the nodes on the left side and then do radiation. Does anyone know if it makes a big difference in outcome in where you go for radiation ?

I was diagnosed with squamous NSCLC. Stage 1A, five years ago. A lung nodule had been found on a lung screening CT. It was advised I repeat the CT within a year since it was 7mm. The follow-up CT showed it had grown rapidly to a 2.5 cm, spiculated nodule. The pathology report said it was an HPV, highly positive P-16 cancer. They suggested looking for possible origins in the head and neck. The screening came back that there were no other sites so they said it was a Squamous, fast growing NSCLC until there might be another nodule they could biopsy later. I had VATs surgery to remove the lung nodule, and the surgeon said that he couldn't find any lymph nodes to biopsy during the VATs. He said sometimes that happens. I just had the 5 year follow-up CT I have yearly. There has been no recurrence so I've been fortunate. They did see a 7 mm nodule (wouldn't you know) so I'll have it repeated in a couple months. That CT showed no enlarged lymph nodes so I just hope.

The nodule I had VATs to remove was found encased in scar tissue. The surgeon said that he found pulmonary adhesions in the lungs that he spent a good time trying to cut away. These adhesions were a result of awful accident I was in when a bicyclist ran into me causing ten ribs to be fractured in multiple places, a fractured scapula, and lung contusions. I was lucky to make it through. The cyclist had no lights on, and was leaving a bar, but if you're injured by a bicyclist in our state they don't require a breath test, a need to walk a straight line, or proof that you are not above the alcohol limit. No reports are done about the accident, not even an accident report. Anyway I don't know if p-16 is a favorable thing.
I did find that I had tested negative for HPV years ago. I'd like to find out if anyone else may have gotten this type of cancer in scar tissue. There are scar tissue cancers.