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HPV and oral/throat cancer

mililani
Posts: 5
Joined: Jul 2008

Hello folks,

I know that having high risk HPV is now considered a risk factor for oral/throat cancer. DOes anyone have any personal experiences with this that might shed some more information? Is there a test that one can take to see if there is high risk HPV in the throat or mouth? I've read one thread on here that said the tumors taken out were confirmed positive for HPV 16. The thing i'm wondering is, why test for it if there still isn't a causal relationship identified.

Half of all HPV carriers have high risk types. That means that if a quarter of all Americans have HPV, than 1/8th, or 37.5 million people do. I guess you can see the implications.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

From what I read on the Internet it appears that many if not most carriers of high risk HPV carry it to their grave without ever knowing it. Thus the high rate of infection. But, of course there are the unfortunate percent that do develop cancers. My suggestion to anyone that suspects they have been exposed is early detection and ongoing monitoring. Meaning, a man that thinks he has been exposed needs to have regular exams by an experienced ENT because research shows that in men HPV16 and 18 related cancers usually first appear in the throat/neck area. For women, it means regular PAP smears because HPV16 is the number one cause of cervical cancer. PAP smears do not detect HPV but do detect irregular cell activity which would prompt specific screening for HPV. And the patient needs to be sure to tell the Doc's that they have or may have been exposed. Coincidentally, the term "cervix" means neck. So, the male version of cervical cancer appears in the throat/neck area (tonsil, base of tongue, adenoid, lymph nodes, etc.). There are numerous websites with tons of info. Copy and paste this one for example.
http://content.nejm.org/cgi/content/full/344/15/1125

In my case once I was diagnosed with HPV16 positive squamous cell carcinoma in a tonsil which had also moved to a lympyh node and once I got over the shock of that, my Oncologist told me that if I had to have a cancer HPV positive SCC was the one to have because it responds well to treatment and has a higher survival rate than HPV negative cancers. Hard to see that silver lining but somewhat reassuring.

I am currently 9 months post treatment and doing great. But it was a tough road to get here with 35 IMRT radiation treatments complimented by weekly Cisplatin chemo.

Hope this sheds some light. Feel free to ask further. JK

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Another tremendous resource and a bit more active set of boards.

http://www.oralcancerfoundation.org/

JK

mililani
Posts: 5
Joined: Jul 2008

Much thanks, JK. I have read that HPV positive SCC responds much better than traditionally caused SCC. I kind of wonder, though, I mean, the CDC states that over half of all Americans will contract some kind of HPV in their lives. Even if we use a pure probabilistic model, and assume even distribution, this implies that there is a total of 20/100 percent of oncogenic HPV (20 oncogenic types/100 total HPV types). Assuming HPV is forever integrated into the DNA of the host skin cells, that means your annual risk is 33,000 new cases a year / 30,000,000 high risk infections * 100% = 0.11%. That's pretty low.

I've read that HPV is common in oropharyngeal cancer. I know that there is a new test available at dentist's offices called the Oral CDX test. They basically swab your mouth and the back of your throat with a brush and send in the collected cells for analysis. It's sort of like the pap smear for the oral cavity.

By the way, what kind of symptoms did you have before the diagnosis? And how was the diagnosis made?

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

My symptomms were few. I had a lump appear on my neck just under my left jawbone. In a period of a few weeks it became golf-ball size. MRI said watery cyst. ENT removed it,said appeared normal. Pathologist found cancer. Second opinion said it was not a cyst but lymph nodes and had the HPV16 which in most cases points to the tonsil area. Laryngoscopy found left tonsil in bad shape. I'll check out the CDX test. That could be a life-saver for future patients. Early detection is what saved my life. Be Well..JK

agslong
Posts: 1
Joined: May 2009

JK-

Read your story and found it to be extremely similar to my husband's. His cancer was also found from a cyst. It was biopsied and found to be benign and his ENT wanted to remove it anyways. The cyst was benign, but squamous cell carcinoma was found in his lymph node with no primary. He had his tonsils removed and several biopsies performed and it was found in the base of the tongue with HPV pos. He underwent 35 IMRT treatments and 7 weeks of chemo. He is now 5 weeks post treatment and is definitely getting better but still having lots of mucous build up in his throat that needs to be coughed up. Did you experience this and do you still? Also, he seems to have a very runny nose especially when he eats. Does this sound familiar at all to you. He still has the feeding tube in (hopes to get that out this week) but has not used it in 2 weeks. He is eating lots of little meals throughout the day but does not have a big appetite. I wondered if this all sounded familiar to you.

AL

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

I am currently about 20 months post-treatments (35 IMRT, 7 weekly Cisplatin). I experienced the exact same problems, as most if not all of us do. Hang in there, it will get better but not as quickly as you would hope. As others warned me, I will tell you that post-treatment recovery progress is hard to see on a daily or even monthly basis. But at first you will definately see improvement in about quarterly increments. It does continue to improve to the point that at about 12 months you can be 90% of "normal". Be careful of the use of the term "normal" though, because at about 18 months you will realize that you have a "new normal". Perhaps not as good as the "old normal" , but something you can gladly live with...........and I do mean GLADLY.

The mucous problem, has he tried Mucinex? It is an over-the-counter med you can get most anywhere. It really helped me. Also, stay away from Dairy products for awhile as they contribute to the mucous development.

As for the runny nose, I do not remember that as a big problem but did have it briefly. Remember that the radical treatments that saved his life also permanently altered the "geography" of his sinus tracts so he can expect a difference for some time. For myself, at about 20 months, I still wake up with a very dry throat but one dose of water and I'm good to go. My sinuses are "different" and I always seem to be clearing my throat, but all in all not bad.

Eating habits change too, but be glad he can eat. Taste buds will likely continue to improve for many months. In my case some things taste different than before, not necessarily bad, but different. This, in my opinion, is part of the "new normal".

Hang in there. Give him my best and tell him I guarantee he will feel better over time.

God Bless you both...............and be sure to give yourself a huge pat on the back for the very important role of caregiver that you play. We survivors would not be without you.

JK

JGE
Posts: 50
Joined: Mar 2009

I am wondering how 20 months feels?

At 6 months post treatment I feel pretty good. Now my biggest problem is wrapping my head around the idea that it may be gone... forever! Do you feel confident at 20 months that you are going to be a (very)long term survivor? Should I expect at 20 months to still be feeling my neck for lymph nodes every day and every time I feel a little tired or stuffy to get freaked out? Does that go away?

Hard to get back to "normal" when u r worried all the time.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

But, 20 months feels better than 19, and so on. I doubt I will ever be able to completely ignore the 800 pound gorilla in the room (now, I think down to a mere 100 pounds), but I do find myself worrying or contemplating much less frequently. I am an engineer, we deal in constants. In my case I have "cyphered" all the possibilities to excess, yet Mother Nature (and my blessed wife) have convinced me that everything is going to be OK and that I should enjoy each day, each week, each hug, each joyful moment, with enthusiasm.

You will get there.

I would encourage others on this Board to comment.........many of whom have a lot more than 20 months under their belt.

God Bless..................Stay well..............JK

cam1234
Posts: 2
Joined: Jun 2009

I finished Tx(11 weeks ago) for SCC base of tongue with 2 nodes..stage 4A with HPV P16. Had my Tx. at Hopkins(stellar). The before Tx. and after Tx. pics of the PET of the tumors were unreal....that is; The response to treatment was GREAT. No surgery was required. The Hopkins Docs say that, if you throw in HPV, the disease is over-treated. They also said that the cure rate for the disease (with HPV) is(I kid you not)...too high. They are starting clinical trials with a scaled down version of Tx. with light radiation and NO chemo. Having the disease with HPV greatly improves(so I'm told) the response to Tx., and long term survival.

mandymay
Posts: 1
Joined: Jun 2009

My husband finished radiation 14 days ago. Chemo 21 days ago. I have a couple question for anyone kind enough to answer. First, I'm not sure if his cancer was HPV or not. Here's what Happened:
He got a lump on his neck in December 2008. Biopsy showed Squamous cell carcinoma in Lymph node. Scans showed The primary on the back of his tongue, with spread to the swollen lymph node it's twin on the other side (but this one was minimal) The doc told us he got this one of 3 ways: smoking (40 years), drinking (not much of a drinker), or giving oral sex??? (yeah it was probably the smoking) Can I assume from that explanation that this is HPV? Don't get me wrong, I'll ask his doctor at the next appt.
Next question: Nobody is telling us things like: why did they schedule an appt with the ENT surgeon for 7-09? What is getting the feeding tube removed like? Will he have stiches? How bad is that?
Next question:
His main complaint has been the mucous in his throat. Mucinex hasn;t worked. How long (on average) will that take to slow down? We've tried Robitussin and that seems to work, but he doesn't like to take it b/c it knocks him out and he says he's been sleeping long enough.

Does anyone want to give me a heads up on anything? Something you wish someone told you about recovery or future prognosis?
Thanks so much!

byzas
Posts: 9
Joined: May 2009

I'm happy to hear your husband finished his treatment. It all gets better now, it just takes time.
I had scc of my left tonsil in January of 2007. I finished 39 rounds of radiation and 8 chemo/eurbitux treatments. The mucous was horrible. So many things were recommended to me for relief and I tried everything. In the end the only thing that gave me relief was rinsing with salt water every hour or so and waiting for time to pass.
Between the mucous, sores in the mouth, inflammation from the radiation and so on, it was extremely difficult to speak, let alone eat or swallow. I remember it was the middle of June before I began to feel "normal" again.
It's been two years now and I still carry water. The inside of my mouth has changed, my uvular is smaller,my tongue has a different feel, my point is, things are different but they are my new "normal".
Every single person has their own experience but what we seem to share in the end is that we made it through it.
Take care.
Linda

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

the mucous goes away in a month. The tube they just pull it out, it doesnt hurt at all. No stitches i had it done at 8 am and was surfing that evening at 5.30 pm . I would have left it in , i liked my tube but it is summer time to swim and surf.
I make a shake with GNC Amplified Muscle Meal ,plus Supreme Foods veggie and fruit powder, plus Reliv Now powdered vitamin, plus Flax Seed Oil, plus freeze dried black rassberries from stokesberry farms in Ohio ( theres a study going on about them so i figured what the heck), I loved being able to just dump it down the tube and go now i have to drink it , it doesnt taste bad its a little thick and gritty i could water it down more and drink it in 2 settings but i like to pound it down in a 16 oz glass oh yea thats mixed with water.
I feel great with the weight loss and quit smoking , and now a good diet with these power shakes i feel better than i did before cancer.
My sweet taste buds arent back which is a good thing but coffee tastes good sweet which is weird.
My first foods that tasted decent where cheese omelets with american and chedder and mozarella mixed together. Nathans hotdogs the long skinny ones. Healthy Request chicken soups. Before and during radiation i was lucky it was eggnog season and the eggnog was the only thing that tasted good and it packs on the pounds I did 2 months of induction chemo Taxol Erbitux and Carboplatin then 7 weeks of radiation with doubles on fridays and chemo Cisplatin everyday on weeks 1,4,and 7 then a radical neck dissection after. The numbness in my fingers and feet has started to fade . The more food and water you get in the better you feel. The surgery the radical neck dissection isnt bad at all after the radiation its nothing i wanted it all cleaned out and tested i dont care about a scar or anything.
I dont remember alot now i chowed down the pain meds. Dump 10ml of some liquid Roxicet (liquid vicodan) down the tube and i felt fine.
I remember the 2 months after treatment was the worst. Those weeks of hacking up a gallon a day of mucous were the worst.
It does get better thou. Sleeps enuff? i wished i could could have slept suspended animation for the 2 months after.

elwoodsinoakdale's picture
elwoodsinoakdale
Posts: 67
Joined: Apr 2011

Hi everyone my husband finished his treatments for tonsil cancer 4 months ago, no peg, but he does not want to eat, just drink ensure plus all day. He hurts all over and just feels like crap. He had hpv 16 and they did not do surgery on him. I was just wondering if anyone had this problem, he says he has no desire to eat, since everything taste like cardboard due to no taste buds.

Thanks

Linda

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Linda,
As someone who spent most of my life enjoying eating too much, I know how it feels to feel sorry for yourself because you can't taste food. Is your hubby getting in enough calories? Getting plenty of water in? If he's lacking in either area, he will continue to feel like crap. Has he tried milkshakes made with Ensure and fruit or chocolate sauce? I did good for a while on high calorie smoothies - yogurt, protein powder, banana and peanut butter. I had one a day for a while, because I could still drink it down pretty quickly, and get in more calories than I did with my sugar free nutrition drinks that I had the rest of the day. On Sweetbloods Superthread, you'll find several recipes for liquid food. Four months seems pretty long to have no taste - is he still trying to eat, then giving up, or is he not trying? I tried lots of things in my quest for things I could taste AND swallow. Also - if he's not taking in anything but water and Ensure, is he doing swallowing exercises? A good one for me was to take a sip of liquid in my mouth, hold it for a sec, then pretend it was a huge lump of food I was swallowing.
I recall being frustrated, too, because at first, the foods I could taste the best were foods I couldn't eat because they would sting or burn too much. Hope he regains his desire to eat soon.

elwoodsinoakdale's picture
elwoodsinoakdale
Posts: 67
Joined: Apr 2011

Somedays he will eat all day, but then he has days that he won't eat for 4 days, just drink water and ensure. I try to tell him if he does not eat he will feel like crap, he says you don't understand, I have no taste. His taste buds are all messed up they come and go. I just wish this was over, I am scared all the time, wondering if his cancer is back, is this why he won't eat, or maybe something else bad is wrong. He has a pet scan on the 19th, pray its ok.

Linda

waywest's picture
waywest
Posts: 44
Joined: Jul 2011

Hi Elwoods, as caregivers it is hard for us to understand how difficult it must be to suddenly have a different relationship with food. My husband is about 4 months post treatment and there are still days when eating is torture for him. Foods that he enjoyed on Monday suddenly become unpleasant on Tuesday. The fact that most food has no flavour and is often difficult and/or painful to swallow makes it very difficult to eat.
This is a long torturous process and be prepared to toss out half the groceries you buy.
I am constantly experimenting. Smoothies seem to work best and most consistently.
Some days he can eat a sandwich and other days he can't.Ensure is a good fall back but I prefer to make my own. I can pack 800 calories into a Smoothie without batting an eye now. Sweetblood22 has lots of great recipes. It's important that throughout this process you try and maintain his weight. Weight loss now is an enemy that directs your body away from the healing process.There are so many side effects to this treatment that we live in constant fear of recurrence every time a new one rears it ugly head.
I spent a great deal of time reviewing the list of side effects and now I can just go "PHEW" it's just another side effect and hope for a clean PET. Good luck on your husbands PET and be patient. This was the hardest lesson for me to learn.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I responded on your thread about "how long can you live on Ensure", didn't realize you posted here, as well.

If he isn't losing weight, and he is taking in enough calories, I'm not sure I'd nag him. It's really hard to explain to someone that hasn't gone through this whole ordeal, how difficult it can be to eat again. Having no taste, sometimes no smell, and sometimes having it taste like salty metal, combined with no saliva, or pain , or any combination thereof, makes for a very difficult time eating. Believe me when I tell you, as frustrating as it is for you, it's about 1,000x worse for him.

No peg certainly makes it even more difficult. If he is getting enough calories, but only through the ensure, I would think that's good.

elwoodsinoakdale's picture
elwoodsinoakdale
Posts: 67
Joined: Apr 2011

I am feeling better after reading the post on here, about how alot of people had problems eating. Steve says food just does not taste good, I have to stop nagging at him to eat, it is just scary as hell. He does eat on his good days, I guess I expect to much from him. I looked on the calander and realized he wont be 4 months post until the 20th of this month.

Thanks everyone for your support

Linda

elwoodsinoakdale's picture
elwoodsinoakdale
Posts: 67
Joined: Apr 2011

I am feeling better after reading the post on here, about how alot of people had problems eating. Steve says food just does not taste good, I have to stop nagging at him to eat, it is just scary as hell. He does eat on his good days, I guess I expect to much from him. I looked on the calander and realized he wont be 4 months post until the 20th of this month.

Thanks everyone for your support

Linda

elwoodsinoakdale's picture
elwoodsinoakdale
Posts: 67
Joined: Apr 2011

I am feeling better after reading the post on here, about how alot of people had problems eating. Steve says food just does not taste good, I have to stop nagging at him to eat, it is just scary as hell. He does eat on his good days, I guess I expect to much from him. I looked on the calander and realized he wont be 4 months post until the 20th of this month.

Thanks everyone for your support

Linda

elwoodsinoakdale's picture
elwoodsinoakdale
Posts: 67
Joined: Apr 2011

I am feeling better after reading the post on here, about how alot of people had problems eating. Steve says food just does not taste good, I have to stop nagging at him to eat, it is just scary as hell. He does eat on his good days, I guess I expect to much from him. I looked on the calander and realized he wont be 4 months post until the 20th of this month.

Thanks everyone for your support

Linda

elwoodsinoakdale's picture
elwoodsinoakdale
Posts: 67
Joined: Apr 2011

I am feeling better after reading the post on here, about how alot of people had problems eating. Steve says food just does not taste good, I have to stop nagging at him to eat, it is just scary as hell. He does eat on his good days, I guess I expect to much from him. I looked on the calander and realized he wont be 4 months post until the 20th of this month.

Thanks everyone for your support

Linda

michdjp's picture
michdjp
Posts: 186
Joined: Sep 2011

Great to hear!!!
my dad was just diagnosed with scc leftg tonsil and lymph node HPV + and has had 8 IMRT treatments and one cisplatin 76mg treatment. they may switch the chemo drug to carbo/taxol due to strain in kidneys.. what was your treatment? thank you for the encourging news regarding this type of cancer because everyone at the hospitals get me soooo worried

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

I responded in one of your other posts....

Best,
John

curt123
Posts: 1
Joined: Jul 2012

I was part of the study at Hopkins that used reduced radiation treatments. I still had 36 radiation treatments and 7 chemo treatments. I'm starting to eat solid foods again. I did get the feeding tube and I really hate this thing and can't wait to have it taken out. I'm wondering about "Now What" Will I have HPV for the rest of my life as there is no cure for it? Am I a carrier of HPV if someone drinks after me could they get HPV 16? If I blow out candles on a birthday cake is there a possibility that I could infect someone else with HPV 16? I guess that I am lucky to have had an HPV 16 positive tongue base cancer rather than a negative. From what I’ve read the survivability rates are much higher after 5 years but what about 10 year rates? I haven’t seen any of those yet? The whole experience has been very unpleasant to say the least. I have one more week off and then I’m going back to work ready or not. I’m not feeling great at the moment but it could be worse. I came off the pain meds maybe a little too fast and felt very depressed for a while but I think that could have been a result of coming off the meds too fast? I’ll continue to pray for everyone that has any type of cancer. I saw a lot of suffering people down at Hopkins when I was going through my treatments and it really opened my eyes to just how big a problem this really is. I saw a lot of grey people down there. I think the chemo turns people’s skin grey. I’m surprised there hasn’t been a book or movie with the title “Grey People” about the pain and suffering going on everywhere in the world caused by cancer.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Hi Curt, welcome to the forum...awesome place with many great people here.

LOL, kind of funny you mention reduced radiation and you had 36 sessions which is more than most of us had at 35... Maybe you had a reduced level of intensity..mine was like 6000 - 7000 Gray or Rads, I always confuse the two, and I don't care to remember, LOL.

I'm not so sure to say that you still do have HPV... While it is not sureable as you say, most people do clear the body of it with health immune systems.

And most of what I have read, the thought is it would be passed through bodily fluid exchange.

Congrats on finishing up treatment....

As for "What's Now"....you wait, you continue on with life, you recover, and you stay persistant with your follow-ups.

BTW, there are a lot of people here that are out past ten years....

I was STGIII SCC Tonsils and Lymphnode, HPV+...clean and clear since Jun2009.

Best,
John

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