I've been free and clear for 4 years. I get irration on the left side of my tongue from time to time. That's the side they radiated the most. Irration started last weekend. Two days ago a small hole with white tissue around it appeared though I didn't bite myself. Will be going in to have dentist scan it early this week, but was wondering what percentages of HPV-16 survivors have re-occurence? What's the typical prognosis? Can they cut it out only? Or do they do radiation again?

Original diagnosis revealed cancer in left tonsil and I had a cluster of tumors in lymphnodes on the left side of my neck, and PET scan before treatment revealed it was already started in a lymphnode on the right also. My understanding was that I had to have just about the maximum radiation possible. I did 6.5 weeks rad and 6 weeks Cisplatin concurrently.

When I was sick and read people's stories here, I got the idea that if it reoccurred it was just a protracted ending. Is it usually? Or does one have a shot at being able to live with a quality of life worth living?

Frank

There have been several members who have had radiation more than once. Its on a case by case basis. I know of 3 who have done it 3 times. They do have their quality of life issues but they have adapted and do the best they can.

When a patient is backed into a corner and their choices are to do nothing and quit before you even try to beat it or to try to get treated most people would choose to try. I was faced with this decision when I had my 3rd diagnosis of OC. I almost did nothing and let nature take its course. As a single mother I thought the easiest thing on my children would be for me to prepare them for my death while I was still in 'good' health. But because of Brian Hill and the members of this forum who became my dear friends, I gave it a shot and went thru with having my jaw removed. I do have some issues but nothing I complain about as it sure beats not being here at all. I think anyone who is handicapped would say the same thing, its better to be alive and have 'issues' than not to be here.

It sounds to me like you are one of the lucky ones who got sick, went thru treatments and was able to bounce back and resume your regular life. Recovery can be long and I see you had your feeding tube for a long time. But, you are very fortunate! Non smokers who have HPV+ OC have much better statistics with both response to treatment and their odds of recurrence. Plus the longer you are past date of being treated and declared NED the less odds of a recurrence. Congrats on your successful treatment and living a good healthy life

Hi Frank, we are a case of HPV positive who have had a recurrence. Kris was then treated with surgery - salvage surgery, which was quite brutal. But a year later he is alive and well. A recurrence is not a death sentence.
I think your mind is getting away from you though. You have not yet had a biopsy or even a scan. So you do not yet even know that you do in fact have a new cancer.
If this is a cancer, it is in a different location from your last diagnosis, so would be a completely new field for radiation - if that is indeed required.
I certainly hope you have a NED/NAD . But if not, believe me, it can be well treated and you will still live a good life.
Tammy

Frank

Tammy and I disagree on lots of issues here, so when we both concur on an answer, it means a lot. What she said is exactly right.
Now as far as "maximum" radiation, I am a living expert, with only 1 poster of 8770 members having had more than my 137 grays (GY). As with Kris, recurrences are often treated with salvage surgery. Extra radiation is an option if a 3rd recurrence would be catastrophic . The second round of radiation was very doable and gave me 4 NED years. I am witholding judgement on the wisdom of my decision to have those last 40 GY as 100 appears to be the maximum without major quality of life issues. But a second round now seems a walk in the park compared to the third.
You have many good options
Charm

I had had 5 recurrences in less than 3 years and had three surgeries, radiation three times for a total of 130Gy, as well as chemo and targeted therapy twice. Usually after a recurrence, the stats are grim, but reirridation is being done more and more, as well as surgery, so that's changing everything. As mentioned, each case is different, and so is the doctors training and experience matters if they can treat you or not. Usually for a recurrence, the best option is usually surgery with or without radiation or chemoradiation.

The recurrence rate for HPV related cancer H&N cancer is about 15 percent, much lower than non HPV. In a HPV positive smoker, the recurrence rate may be higher. Also, they have found distant failure after 5 years with some HPV, maybe a different subtype, while non HPV cancer failure levels off after two years, so it's being recommended that surveillance with HPV cancer be continued past the 5 years.

Oh Charm, and I thought we only disagreed on PEG insertion.
Made me smile though.
Hang in there tough guy
Tammy