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Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Well first off I love this site and I'm so glad I found it about 10weeks ago when I finished rads. I wished I'd found it sooner. So here I am 10 weeks out from rads, 12 weeks out from Erbitux for SCC IV larynx HPV negative. I see my ENT on Friday and should get a schedule for my first PET post treatment.
Here's my concern and worries; I've had over the last 5 years 10 biopsies in the area due to Carcinoma in-situ.finally this last March I went in early for my yearly CT because while the scopes monthly had been clear for a while my voice continued to get worse even with more therapy. Well that CT showed the tumor deep in my larynx. Another large biopsy was done and after surgery the dr told me it was cancer this time and we would move on the chemo and rads. Of course my question to him was "how did this happen?" he told me he suspected that all of the in situ and now this tumor was caused by HPV since I've never smoked and I am a very rare drinker, very rare. However when the biopsy came back I tested negative for HPV and HPV16. Now not that I wish for HPV but I've heard that HPV responds very well to treatment so I was thinking it was better if I were positive. My doctor said I could still be positive even tho the biopsy showed not. Have any of you heard this? He also said it could be from all of the second hand smoke I grew up around.
Here's where I get worried, last night I started doing web searches (big mistake I know) on HPV and can it test negative but be positive. Well I couldn't find much on that but one thing led to another and I saw all these negative H&N cancer results. I didn't mean to read anything about H&N but it just happened. Now I'm scared for my upcoming PET and the fact that my HPV was negative. I am afraid the tumor is still going to be there. My dr wants to wait a full 3 months for the scan to avoid false positives so that makes me feel that if we see any hot spots it won't be good. Guess I just need to have a little pity party for a while and maybe I'll snap out of it.
So in the end what I wanted to know is:
Can HPV test negative but actually be positive?
Uh why did I allow myself to search? I never once did any searching when I first got diagnosed and never since then. Only last night, big mistake and the bad part is, I knew better ugh ugh ugh!!!

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

My husband was diagnosed with oropharyngeal scc in April of this year. He had two fine needle aspirations which came up negative for HPV. His Rad Onc suspected those results were wrong and ordered a core biopsy. Those results were positive.

I think there are a lot of variables at play here. How much tissue did they take for the test? Who conducted the HPV testing? It's very possible you have false negatives on your tests.

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

Sorry I can't answer any questions on HPV but I will say I had surgery in January (cancer in my jaw), finished chemo and rads mid May and don't have my first PET until October. My ONC scheduled a CAT w/contrast 12 weeks after chemo/rads and then my surgeon moved it up to 10 weeks out. Happy to say it was NED. Stay positive and stick with this site. John called it "scanxiety" and it is certainly is normal. As for the HPV question, I'm sure someone will post answers for you.

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

Hi Billie,

The simple answer is yes you could test negative for HPV and really be positive (after all anything is possible). More than likely the treatment schedule you had would not have changed regardless of the HPV results. Trying to isolate the cause of cancer in your own mind will drive you crazy, i.e. second hand smoke, smoking, drinking, being promiscuous, driving to fast…. We just caught a bad break, none of us deserve it. As for reading and researching statistics, that will teach you. This website contains real life statistics, read it enough and it will break your heart, but it lays the cold hard facts right at your feet. There is always going to be something about our treatments (was it enough radiation and chemo, did they give me the right stuff, did I catch it early enough…). One thing agreed to on here is a PET scan to soon following treatments will give a false positive. Scanaxiety is yet another cross we must each bear.

I think you did the research because you got cocky and thought you could handle it, after all you’ve been through hell and back already. The reason I say it is because I think that way, but in reality I am never ready for what I read. I prefer to think I’ve been treated and everything will be fine. To think I am wrong is like reading the negative statistics. They drive me crazy and my wife won’t like me crazy.

Best,

Matt

katenorwood
Posts: 1863
Joined: May 2012

Billie67,
We have different dx's. But saying this we both live with cancer. I hate statistics....because they mean nothing to us. I praise you and others that have been through the ropes on being proactive and asking the right questions. A question so I understand HPV H/N better....is it not protocal to check pets with a CT or MRI after showing suspicious areas ? And with the biopsy....wow, can't believe it can show normal when it's not. I believe you all, it just blows my mind. I pray that their testing with this dx gets more accurate. Sending all my positive thoughts your way ! Katie

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Billie,
I understand where you are coming from. My husband has base of the tongue cancer and he has never drank or smoked either. We are anxiously waiting to hear if he has HPV. Three months ago I am sure I would have been upset to hear he has it, but now I pray he does. As far as the research goes, it sucks. I have a tendency of wanting to know everything about everything so as soon as the diagnosis came I started the search. I haven't told my husband what I found in all that searching, but I have to be honest it scares me. Since finding this site I have tried hard to fight the urge to search. I value everyone's opinions on this site. Hell you are going through this or have gone through this. Your insights are much more valuable to us at this time than research that may be flawed or outdated. As far as could you have gotten a false negative, the answer would be yes to that question. Our oncologist said this was a possibility so he sent off several samples to the lab to be tested. Don't worry too much (Easier said than done I know). You have lots of support here and your faith will do wonders to keep you going.

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Will be praying for you.

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

for me 16 plus years ago they could not find the primary and the causes then were, smoker, drinkers and over 55 years old. there was no talk about hpv then.

my doc said then i agree, i am just unlucky and you will be fine keep a positive attitude. you only have two chances... first, you will not survive and second and most important you will kick butt and survive.

i did and you do can do and will. PMA

we did not have internet then that showed much, so i totally agree... reading the internet gives us way to many questioning thoughts. stop reading the tests and results and start believing you be fine and survive. i too back then had false reading, the waiting game for results and more tests sucks.

john

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

LOL, I think we are all guilty to some degree at looking stuff up and then wishing you didn't....

I can't really answer on the HPV testing, I don't really know if it's a whole body thing, or localized to the specifically effected area.

My suspicions are that it's in the specifc area, other wise it seems they could detect it from any cells or tissues, not just biopsy of tissue.

As for statistics and the internet....

Most of these studies are old an oudated at best.

The most important is that they are just that, numbers and stats.

You don't know what all of the conditions and variables are that were considered. There are tons of variables...general health going in, age, genetic background, treatments, etc.....

Each of us are original and unique, nothing makes us exactly the same. You could be one of those outliers on the stats. One that doesn't even come close to falling within the range of the sample...and thrown out of the results, LOL....

Good Luck on your upcomin scans...

Best,
John

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Thanks to you all for your input and support. I still kick myself for even searching about the HPV! I know better and I did it anyway ugh! I was so happy when I found this site because I'd rather hear from real people than to hear old statistics and results. I'm trying now to forget all the stuff I read and focus on it not making a difference if my cancer was HPV derived or not. I just have to hope that the treatment did what it was supposed to do regarless of how I got it.
Thanks again everyone and comments are still welcome.
Billie

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

It doesn't matter, nor change a thing on when or how it was derived..there are no absolutes as for that either.

Now just concentrate on recovery, surviving and staying healthy for yourself, your lovely wife, and all of your family.

Best,
John

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Thanks John for the good advice. One part gave me a chuckle tho, I am the lovely wife haha! I know the name Billie throws people off but I'm the girl.
Actually my name is Billie Jean, but the whole Michael Jackson made it a little crazy so I usually just say Billie.
Anyway, I appreciate your kind words and I will Truro shift my focus to where it should be.
Billie(the wife haha)

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

OK, but saying your lovely husband, just doesn't sound right, so I'll just leave it at enjoying your man...

I know better..., I've read your bio, and your posts enough that I should have remembered that.

JG

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm used to it, I get a kick out of it. Actually you at least got the name right. People are always calling me "Bobbie" and it happens so often I stopped correcting them and just answer to it now! Lol have a great day!
Billie

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

is my favorite song by Michael Jackson....I searched some sites that scared me so bad before I found this one...I'm not sure if I want to know what caused my cancer, on the epiglottis..I WAS a heavy smoker and there was a period in my life where I was also drinking quite a bit, then i did acrylic nails for 5 years,so who knows. I have complete confidence that my Surgeon and His team did a fantastic job and saved my life.

In fact, I was looking around this site today, and found out my cancer might not even fall under Head & Neck, but, I don't care I 've made too many friends on here to leave now :)

Have faith that you're going to be okay, take care

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Thanks so much for the kind words. I guess you are right, we shouldn't so much care what caused our cancer as long as we are not doing anything to keep it and make it return.
I have confidence in my team of doctors too but there's that nagging little thing that keeps popping up saying "what if" I'm normally a very positive person so this is new behavior for me. No more looking on other sites for me ever again tho. That was the first time and the last time. I know better and I got caught up in the search and couldn't stop....ugh stupid me!

Be well,
Billie

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

It's hard not to doubt after this....

My favorite saying during treatment..."Other than having cancer, I'm in perfect health."

I was one of those that rarely went to the MD..if I went, you could count on the fact that I was big time sick.

Eventually whatever I would have, would get better...until one time it didn't....

Now if something starts feeling not right, I give it a few days to a week...., then those what if's and doubts start trying to creep in.

Luckily I have an awesome ENT and Chemo MD.... They both are very pro-active... ALways reassuring me, and telling me they would much rather I be pro-active than re-active.

I tend to be a little less paranoid than the first year or two, LOL.... But even now, it doesn't take a lot to get the imagination going to bad places.

Stay strong, stay positive...Billie Girl :)

John

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

and when my dad was diagnosed I became a "crazy detective", lol. I searched everything. In one monthe I read all I could read :).Yes, bad idea.

Then I discovered few forums of which this one was the best and I read a lot of posts from many people who went thru exactly the same thing as my dad.. or even worse. And most of them came out stronger, healthy and NED - which is most important. So this keeps me going. That my dad can do it also. He is strong, healthy and proactive. So I believe he can survive, no matter the stage.

Considering HPV - he is negative! And also multi nodal involvement (N2b in May and N3 in July (just before the start of tx)). As much as I read about HPV research shows that HPV related cancers are better responding also because people with HPV related cancer are younger, non smokers, non drinkers, better general health... So I realized that my dad is also not that old (57), does not drink or smoke for 13 years and has great general healts. So, even though he is HPV negative, he has great chance to beat this thing! So I stick to that :).

So, be positive like all the others have said! And keep beliving!

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

I believe that you are absolutely correct in your thinking.

That's my big problem with statistics, I don't know exactly what goes into them. I'm pretty sure that they just look at an overall representative sample of the cancer population (or H&N Cancer for us).

But that dosen't give any specifics on age, genetics, general health, etc....

So I too can only presume that the better your health and background going in, the possibility of a good outcome.

No guarantees either way...who knows why something works well for some and not others...

The bottom line is that we are all different and we all respond, react, and recover differently.

But I'm going with your logic...

John

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