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HPV Positive Head & Neck Cancer

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

I have noticed several posts from HNC victims that share a common characteristic of having occured in non-smoking, non-alchol users. I have mentioned this before over the last 18 months or so but wanted to take the liberty of suggesting again that if you are diagnosed with HNC, and especially if you are a non-smoker/non-drinker, ask your Dr. if the Pathologist can DNA screen for one of the high-rish HPV strains. In my case M.D. Anderson did that and as a result determined that my lymph node secondary was HPV16 positive which 90% + of the time points to the tonsil area. They went back in and found the primary in the left tonsil which greatly accelerated the treatment protocol. So, the HPV tag saved my life. Also, it turns out that research indicates that HPV positive SCC's respond significantly better to treatment than HPV negative SCC's, and as a result your 5 year survival odds go up. I found this the proverbial good news/bad news, but at a time when any good news was a God send. If you are interested in more, copy and paste these into your browser.

http://www.oralcancerfoundation.org/hpv/index.htm

http://www.medicalnewstoday.com/articles/144786.php

http://www.medscape.com/viewarticle/570211

Though the most common way to be exposed to HPV in the head and neck is by oral sex, that is not the only way. In my case we determined that my biological mother most likely was positive and gave it to me either in-utero or during the trip through the birth canal. Either way, it deserves serious consideration.

Please feel free to email me direct at JKINOBAY@gmail.com .

Meanwhile, God Bless and please don't overlook the importance of a link to HPV.

JK

needhope1
Posts: 29
Joined: May 2009

JK,

My husband was just diagnosed with SCC of lymph nodes and right tonsil. The doctor also added that he was "happy" that his HPV results came back positive HPV 16. Can you possibly explain this HPV in simple laymans terms to me? How might he got it, is it an STD, why is it favorable vs the negative HPV diagnosis, etc?

We are still in the beginning stages of this diagnosis, we are trying to get as much info as we can from doctors, our first consult meeting with the doctors cannot come quick enough --- the earliest they could get us in for a meeting is this coming Wednesday. In the meantime I am trying to find out what I can find anywhere.

You mention a 5 year survival rate, can you help me to understand this? At this point since we havent met with the doctors, I am trying to not think of "survival rates", but can my husband die from this?

Forgive me if my questions seem dumb, I just don't know what to ask at this point...it is all such new information.

Thanks for your help.

train-nut
Posts: 101
Joined: Jun 2008

Dear needhope1,

Several thoughts: none of your questions are dumb, as a matter of fact, I think they are astute; the number of head and neck cancers which are HPV positive are on the rise; I would not classify it as only an STD although it can be sexually transmitted; the virus can remain dormant for decades; your husband's doc is aware that several studies have clearly shown that HPV+ cancer is significantly more curable than HPV- cancer (Johns Hopkins published a study last year); the 5 year survival rate is the traditional way of calculating successful cancer treatment; CAUTION, many studies are out-dated and don't apply to your husband's situation; if head and neck cancer is going to recurr it will probably do it in 2 or 3 years or less; yes, this cancer is just like the rest of them it can kill you if left untreated; treatment may consist of surgery, chemo therapy and/or radiation; it's not a day at the beach but it is highly do-able; respect it but try not to fear it, this board has many survivors; most cancer care teams consist of some of the kindest people on Earth; feel free to ask more questions; my best to you and your husband. Rich P.S. Write your questions down and bring the list with you when you see the doc, then write the answers down, I was amazed at what I didn't "hear".

jgw7838
Posts: 18
Joined: Jul 2009

i just joined today and i want to thank you for the positive answers, i too was just diagnosed with squimous cell carcinoma of my neck and majority is in my nodes, under went biopsy surgery last wed. to try and find out where it possibly may have started,and im awaiting what my next step will be. mine also was caused by hpv- 16 , and had gotten some answers from the drs. but your response was very helpful, thank you

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

Sorry for the delay, I have been on the road.

I can only talk about my particular case with specificity, but it may very well be that your husband's situation is very similar.

Bullet points of my situation:

>> My cancer originally was diagnosed as adenocarcinoma in a bronchial cleft cyst, which is extremely rare, very aggressive and has a high mortality rat.

>>Second opinion Pathology from MD Anderson said 1) it wasn't a cyst, it was a lymph node, 2) it wasn't adenocarcioma, it was SCC (not aggressive, lower mortality rate), and the trump card was their finding HPV 16 (human pappiloma virs 16, high risk STD). This told them two things, that the lymph node was not the primary, and that in 90% of cases HPV positive cancer in a lymph node came from a tonsil or that area. They insisted I have my tonsils checked, sure enough the left one was in bad shape.

>>after 3 surgeries, 35 IMRT treatments with 7 weekly chemo (low dose cisplatin), all in 2007, I am excited to say I am now about 20 months cancer free according to full body PET scans.

>> About the 5 year survival, that is I think the standard period of time that they require you to be cancer-free in order to be considered cured. In my case, after the 1st mis-diagnosis my 5 yr. probability was less than 50%. When they found out it was SCC that came from a tonsil they raised the probability to 75%. When they found out it was HPV positive they raised it to 85%.

The underlying message is that HPV positive cancers are becoming much more prevalent. As you may know, HPV is the number one cause of cervical cancer in a woman. In a man the cervix (aka neck) is the throat. HPV positive throat cancer, a sexually transmitted disease, is usually passed one of 3 ways: oral sex, in the womb during gestation, or in the birth canal on the trip through. In my case, I had been an abandoned orphan of a woman who we later found out had been arrested for prostitution several times during the 9 months she carried me. This was all back in the late '40's so you can imagine that there was not any safe-sex precautions taken. Additionally, we found out she died at the young age of 28 from.......you guessed it, Cervical Cancer.

Other interesting parameters I have found:

>>Human Papiloma Virus, or HPV, can appear in many strains, I think up to 60-80 different forms. The two most troubling are 16 and 18, both considered "high risk". Of the many others they may only cause warts, herpes, etc., but not necessarily cancer.

>> HPV's can lay dormant for varying periods of time including forever. Many people die HPV positive and never knew it.

>>HPV positive cancers in the throat are by far usually found in men, during their 5th or 6th decade. ( I was 57 at diagnosis).

>>In my case, due to the HPV positive aspect, the Oncologists recommended the radiation and Cisplatin which in combination enhance each other's effectiveness. I think I read somewhere that IMRT in combination with Cisplatin is much more effective than either on it's own.

So, its a good news/bad news situation. As my Doc's told me, if you have to have cancer this is the one to have (HPV positive SCC) because it is less aggressive, responds well to treatment and has a much higher survival rate.

Hope this helps. Good luck to both of you as you tackle these challenges but hang in there. You will make it. It won't be easy and certainly not fun, but there will be better times ahead.

I strongly suggest you ask about a PEG feeding tube, get all dental issues fixed or removed BEFORE treatments, focus on hydration and nutrition (they are key to recovery), think positive, take notes, ask questions until you get the desired answer, and reach out to those of us who have travelled this difficult path in front of you. Please feel free to email me at "jkinobay@gmail.com" if you would like to. I would be glad to help in any way I can.

God Bless.........JK

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Thanks for the information. I have been reading this too and when my EBV came back negative I started thinking about HPV. Thanks for the links.

Warmly,

Mick

cahorne
Posts: 2
Joined: Mar 2010

Thanks so much for all of your input. I was recently diagnosed with HNC. I am trying to decide which treatment I want to pursue. I have seen two radiation oncologist and a Head and Neck surgeon and have either option. The surgeon said he can remove the T1 tumor and do a neck diseciton on the lymph node and it will not be a problem. He recommended radiation treatment afterward and said chemo is a 50/50 proposition depending on how the surgery goes. He also mentioned the tumor (3cm) was not attached. I then met with the radiaiton oncologist and he basically said the normal treatment for this type of cancer is radiaiton and chemo. He also stated that if I had surgery I would have to have radiaiton anyway and more than likely chemo so why do the surgery? Well I was concerned about the different levels of radiation required for the two different resolutions. Evidentely without surgery he would use a 66 gray and a chemo treatment in the 3rd and 6th week. If I opted for surgery he would use a 60 gray. He mentioned the difference in terms of side effects would not be noticeable???? What to do???

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Basically the same options I had. Surgery to remove the gross disease. Radiation because I had focal extracapsular extension (some cancer cells were outside of the lymph capsule) and surgery may not have gotten them. Chemo for any microscopic metastasis PET/CT didn't see. IF they had found a primary tumor my treatment protocol may have been different.

Because I am relatively young (54) and in good health (no other health issues, strong heart, etc.) they suggested the Full Monty. In the end it made sense to me that I could take advantage of the strength and resilience I had and take what they gave out because it meant the most aggressive treatment.

The difference between 66 & 60 gys might be significant. I'm getting 66 and they expect my right parotid gland to have reduced salivary function. My left they think the can spare. Depending on where they radiate it might mean less impact on teeth, for example.

I suggest asking your Dr *exactly* what it means, and do not leave the office until you are satisfied. If it helps let the Dr know you are having difficulty making the decision and you need a more qualitative summary of expected outcomes of any treatment modality.

I hope that helps.

Best,

Mick

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

My diagnosis was quite similar to yours. I stated my mode of treatment below. I didn't have the surgery as they felt a good possibility that the secondary tumor would either shrink or go away completely (which was the case).

Surgery was only mentioned as a resort if there were any of the tumor remaining or any risdual left over after the Chemo and then Chemo/Radiation.

God Bless, and Good Luck with everything,
John

cahorne
Posts: 2
Joined: Mar 2010

Thanks for your advice. I guess I should not be too woried about the different radiation levels required. Did they use IMRT radiaiton techniques?

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

IMRT is pretty much standard these days.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I also had IMRT....

needhope1
Posts: 29
Joined: May 2009

Thanks again for your thoughtful advice.

Leezohn
Posts: 1
Joined: Dec 2009

THANK YOU all for the questions and information shared on this thread.

My husband was diagnosed with SCC 12/22/09. He had a PET scan 12/28/09 which came back "normal" except for a "little uptake" (questionable area?) around the base of his tongue. Yesterday, 12/29/09, a panendoscopy was scheduled for a week from today.

An hour ago, John called to tell me the ENT specialist called him with results from the immunostain from his surgery 12/17/09 (it took a long time for the immunostain results!): HPV+ and he explained "people who have cancer caused by HPV do better."

Your explanation and resources are a Godsend to us now. Thank you all so much for the time and energy you put into your questions and answers which help shed so much more light on the shadows we live in. God bless you.

Leezohn

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I was Stage III SCC (HPV derived) of the right tonsil with one lymph node involved...

I'm 55 and in good health,so my treatment was fairly aggressive. Nine weeks or Cisplaten, Taxotere, and 5FU. Nine weeks (three cycles of three weeks each)....

After that series of treatments I started a seven week regime of Weekly Carboplaten, daily Amifostine Injections and 35 IMRT Radiation exposures.

I was diagnosed 2 January 2009, right tonsil and a lymph node. The tonsils were removed on 5 January 2009, and I finished all treatments mid-June 2009. No PEG but I did lose around 45#.

The last two weeks of radiation and the following three weeks were the worse. I needed pain solutions just to swallow water, and drink 2 or 3 Ensure Plus each day.

Since I've had a clean PET and two clean CT scans. Everything is getting back to (my new normal)... taste was affected and still is, but I have a considerable amount back, just not really the same as before. Salivary function is still lacking, but very small improvements from time to time....

Good Luck and God Bless, you've found a place with very knowledgeable people....
John

Hondo's picture
Hondo
Posts: 5601
Joined: Apr 2009

Hi John

How are you doing, it has been a while since I heard from you, hope you are not spending all that time fishing with out me. Glad to hear your taste is coming back and you are enjoying your new normal you again.

Take care my friend and God watch over you and your family

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

LOL, its been way too cold for fishing this last week or so... I'm seriously thinking about moving to Florida....

Paintslinger's picture
Paintslinger
Posts: 70
Joined: Jun 2012

JK,
Last year I had a huge bubble on my neck that was diagnosed as a brachial cleft cyst (google it to see a picture). A biopsy was done on the fluid in the cyst and no cancer was found. It was surgically removed and--to everyone's surprise--was found to be cancerous at the base where the needle used to do the biopsy could not reach. It was squamous cell carcinoma that tested positive for HPV virus. The primary tumor was found at the back of my tongue. I subsequently underwent 7 weeks of chemo/radiation. If the cyst had not appeared (it was actually an enlarged lymph node)I would have NEVER known about the cancer. Missed a bullet that time.
Take Care,
Paul (Paintslinger)

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