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Pretty Scared Here

sin9775's picture
sin9775
Posts: 198
Joined: May 2013

Hi All.

Here's the deal, as many of you know, my brother, who is 54, just finished up his cancer tx.  I would love to put down exactly what he is being treated for, but also as many of you know, my brother doesn't really know, or care.  He doesn't know what stage he has, he knows it was in at least one lymph node.  He does know that the tumor he had was a T1 and in his left tonsil.  This is what I am struggling with -- All along at the beginning, they told my brother that he was HPV-16 positive.  He was getting all sorts of tests done to see if he qualified for some kind of trial and then at the end he found out that he was NOT HPV+.  He seems to think that he is still positive for HPV (I don't know why), just not 16.  I asked him what number he was, 18?  He of course, did not know.  I have read a lot about all of this, and what I have learned is that in 90% of the cases, if you have HPV throat cancer , it is 16!  90%.  So, I say that the odds of him being positive with another strain are obviously very slim.  My questions:  Is anyone else on here HPV+ with something OTHER than 16, and if they are, are the survival rates for a different number as good as with 16?  Also, are there any tonsil cancer survivors on here that were HPV negative who are long term survivors?  Like everyone knows, it is "great news" to be HPV+, not so great news if not.  I am so scared. I finally just had to put it out there for discussion.  Any kind of info would be appreciated.  Thanks.

~Shawn~

cureitall66's picture
cureitall66
Posts: 867
Joined: Aug 2012

My loved one was dx with SCC BOT (Base of Tongue), 2 lymph nodes involved, HPV16+, Stage IV.

When he was first dx with the "c", he was told by that ENT that he was negative. Once he went to his treatment hospital, they ran their own test and said it was positive. My thoughts on that, were that maybe it was due to a different lab or it was in a different sample that was tested. With that being said, I can believe that it is possible your brother was negative(in the sample/biopsy tested) and then positive (in a different sample/biopsy tested). His doctors would be the best choice to ask that question, but I've heard of some say they were negative, then found to be positive....so I really don't find that unusual.

As far as the difference of 16 and 18, I don't know. I've only seen 16 on this forum. Maybe some other folks would be able to answer that for you. But, my understanding is that "HPV" regardless of the number will have the same results. 

I don't think any of this is really anything to sweat about. But, maybe you could go to his next ENT or ONC visit with him with a list of questions and ask him. I'm sure they would be glad to answer as much as they can with what they know. Unfortunately, there is a big mystery behind HPV and they may not be able to answer you straight on this.

Oh, and typically Base of Tongue and Tonsils are the most effected with HPV. Many long time surviviors out here that check in from time to time. My loved one was dx a year ago and now 6 months out from tx.  

 

Rest easy my friend,

 

~C

longtermsurvivor's picture
longtermsurvivor
Posts: 1820
Joined: Mar 2010

had nonHPV related malignancies and survived, so this is not something to bend yourself in half over.  HPV 18 causes this cancer as well.  And.....   there are certainly bumors that test positive for HPV in one site, and negative in another.  Those tumors behave like HPV tumors whether the biomarkers are consistent or not.  Honestly, the treatements are the same.  So have faith.  Better times are coming.

 

Pat

sin9775's picture
sin9775
Posts: 198
Joined: May 2013

I don't live by my brother.  As his tx is finished, he won't be going daily when I get there in a week and a half, so I doubt if I will have the opportunity to talk to any drs..  I feel like I am being nosey anyway.  I asked a couple of times to see his path report and he said his wife has that, but has never asked her to get it for me to read.  I am going to try to find the right time to ask about it again when I am there in August. We'll see.  Knowing my brother, when he thought the drs. were telling him he was positive for hpv, they were probably telling him that he was probably positive or something like that. I don't know why they would tell him anything before the testing was finished.  Like I said, when the results did finally come back -- no hpv16, so he couldn't be in the trial they were testing for.  Sigh.  I hope you are right about it mattering not which type of hpv you have as far as the good results.  Someone else on here (Helen) told me that too, I think.

~S~

TracyLynn72's picture
TracyLynn72
Posts: 729
Joined: May 2013

that I don't know anything about any of that :(  I'm sure there is someone on this great site who can help you and answer your questions!  

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Shawn,

It's been shown that HPV related H&N cancers respond favorably to treatment but there are many who have done well without being HPV+. I was a smoker, drinker AND HPV+ so I had a double whammy of getting cancer. I try very hard not to dwell on statistics. One day at a time and live it to the utmost.

Fear is natural but fear can be paralyzing. From what I recall, your brother was not afraid and didn't even want treatment. That's a good thing. It's also a good thing that he decided to get treatment as he now stands a fighting chance at survival. The key now is to focus on the positives. Help him to heal. Encourage and support s you've been doing.

Positive thoughts and prayers

"T"

 

phrannie51's picture
phrannie51
Posts: 3783
Joined: Mar 2012

there really is between HPV positive and HPV negative when you're dealing with HNC, but tend to agree with Longtermsurvior....there probably isn't that much difference.  I wasn't tested, so I have no clue if I was or not....and I certainly haven't seen any difference in the treatment for positive and negative, nor have I seen any difference in the scanxiety between those who are and those who aren't.  Like Pat says....it's not something to get bent in half over.....

So take a deep breath :)

p

CivilMatt's picture
CivilMatt
Posts: 3012
Joined: May 2012

Shawn,

I am hpv +.  It is hard for me to spit out that it is “good news”, but I’ll agree with you that for some, the prognosis for cure is better.  Regardless of +/-, the treatment regimen is very similar.  There are over 100 strains of hpv viruses, but only about three that make an appearance in the H&N forum (the other 100 plus are waiting for their opportunity).

All in all, don’t be too concerned (unless lifestyle dictates).

Your brother will more than likely be ok.  His doctors will keep him on a short leash for the next 5 years.

Matt

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Like mentioned, HPV+ derived H&N cancer tends to respond better to treatment. But cancer is cancer and we are all different...

As for staging, hard to say... my gut and a little knowledge would suggest more than likely that if his infected tumor is on the same side as his infected tonsil (as was mine), he's probably STGIII. But that also depends on the size of the tumor I believe. If it were on the oppositie side, more than likely STGIV.

But also like mentioned, either way, HPV+ or not, or which STG, more than likelyt treatment will have been the same.

Not sure from what you said how the first thought he was HPV+, then not... HPV (as far as I know), can only be determined through biopsy of tissue. That would have definitively documented HPV and type, or not..., and more than likely before treatment even started...

Again, like mentioned, don't ger wrapped up in the details... Especially at this point, it doesn't really matter... 

All that matters now is the future, recovery and support...

Best,

John

Laralyn's picture
Laralyn
Posts: 453
Joined: Apr 2012

The treatment is basically the same, regardless of HPV status (at least it is, currently). So it doesn't matter from that perspective.

In terms of survival odds, you never know which side of the odds you're on until it either happens to you or doesn't happen. Even if the odds of survival are 10%, he could be in that 10%, or if the odds of survival are 90%, he could be in the 10% that doesn't. I mean, look at everyone here--even for the smokers, the odds of getting H&N cancer versus the odds of NOT getting it mean many of us have already "beaten" the odds... just not in a way we would have chosen. :-)

So try to keep these things in mind. We all live with uncertainty. My dad showed my mom (who has Stg. IV lung cancer) an article about a guy in Brazil who was killed while he was sleeping in bed when a cow fell through the roof onto him! Anything could happen to any of us at any time. All you can do is focus on what you can change, right now, and do your best to let go of the rest. 

sin9775's picture
sin9775
Posts: 198
Joined: May 2013

Thanks, everyone.  I know that the treatments are the same, regardless of one's hpv status.  I guess now that his treatments are over and we have to wait the three months before a scan, I find myself worrying about his odds.  He was (is?) a heavy drinker and smoked when he drank.  I am the only one in my family who knew of his smoking, well except for his immediate family, of course.  It is my most sincere prayer for my brother, that he does fall into the surviving 50% and will never want to take another drink again in his life and will live out his remaining days sober!  That would be the best gift God could bless our family with.  Is that too much to pray for?  Obviously, if he gets cancer free he most likely will not stay that way if he starts up drinking again.  :-(   

Up until his cancer diagnosis, his sobriety is what I prayed almost nightly for.  I was always afraid of him killing himself, or worse, someone else, while driving.  Then I thought his liver would give him problems (his numbers are perfect there).  I never once considered tonsil cancer.  Even when I thought about cirrhosis, I always thought it would be when he was older! 

Thank you for letting me vent.  Sometimes I just need to get things out. Thanks again for helping me get my head straight.  You are all so great.

~Shawn~

 

robswife87's picture
robswife87
Posts: 180
Joined: Mar 2013

I just did a lot or research on this. 

My husband was told he was HPV+ 16, after reading and rereading the path report. He is p16+ but High rish HPV -

After much research, and not in laymans terms. p16 is a protien and in his case is overepressed. The survival rates for p16+ HR-HPV- is about the same as HR-HPV+. It has to do with the p16 which in our case is not HPV+. 

the p16 is not about the HPV. Maybe this is where we get confused because of the HPV 16+. Survial of HR-HPV- but p16+ is still 86%.

If I have this wrong, I would appreciate anyone telling me.

Sandy

robswife87's picture
robswife87
Posts: 180
Joined: Mar 2013

This is the article I found while searching and this is what I think may be our case here. Although we were told HPV+, the path results tell a different story. I have have put Rob's path report here also

MICROSCOPIC:
ADDENDUM REPORT FOLLOWING SPECIAL STAINS: (4/2/13)
==================================================
Immunohistochemical stains using antibodies to p16 and in-situ hybridization
for high risk HPV were performed on this squamous cell carcinoma. The tumor is
diffusely and strongly positive for p16 but is negative for high risk HPV usin
in-situ hybridization.

 

This is the research I found:

 

p16 positive oropharyngeal squamous cell carcinoma:an entity with a favorable prognosis regardless of tumor HPV status.

Source

Department of Pathology and Immunology, Washington University School of Medicine, St Louis, MO 63110, USA. jlewis@path.wustl.edu

 

Abstract

BACKGROUND:

In the human papillomavirus (HPV) era, the best way to assess oropharyngeal squamous carcinomas (SCC) for risk stratification is not clear. Many recommend use of both p16 immunohistochemistry and HPV in situ hybridization (ISH). A significant minority of tumors are p16 positive and HPV ISH negative, the significance of which is unclear.

METHODS:

Two hundred thirty-nine oropharyngeal SCC were tested by immunohistochemistry for p16 and by ISH for high-risk HPV. For p16 positive, HPV ISH negative cases, PCR was conducted for HPV. The findings were correlated with pathologic and clinical findings.

RESULTS:

Of the 239 cases, 187 (78%) were positive for p16. Of these, 139 (74%) were positive for HPV by ISH. Of the remaining 48 cases, 45 had material for PCR. Nineteen were positive for HPV, leaving a group of 26 p16 positive and HPV undetectable SCCs. In the p16 positive cohort, there was no difference in survival between HPV ISH positive and negative cases. Comparing the HPV ISH positive and HPV ISH and PCR negative SCC, there was again no difference in survival. p16 positive, HPV negative SCC still had significantly better survival than p16 negative SCC in univariate and multivariate analysis.

CONCLUSIONS:

Outcomes for p16 positive, HPV negative oropharyngeal SCC are not significantly different from p16 positive, HPV positive tumors and are significantly better than for p16 negative tumors. These results suggest that p16 immunohistochemistry alone is the best test to use for risk stratification in oropharyngeal SCC.

 

http://www.ncbi.nlm.nih.gov/pubmed/20588174

 

Hope this helps

Sandy

donfoo's picture
donfoo
Posts: 1274
Joined: Dec 2012

Hi,

HPV is a general category for a number of various viruses. p16 is absolutely one of the HPV strains. Staining positive for p16 indicates much better outcomes than p16- results. You can not be HPV- and p16+. You could be HPV+ and p16-, in the case you are stained positive for p18+ for example. With HNC and being HPV+ means a very high percentage you are p16+, I believe 80+ % is p16, p18 some and very rarely any of the other types of HPV is present. don

robswife87's picture
robswife87
Posts: 180
Joined: Mar 2013

Don am I reading Rob's result wrong. It states HPV neg but p16+. I have tried to make sense of this from the beginning

Sandy

donfoo's picture
donfoo
Posts: 1274
Joined: Dec 2012

Hi Sandy,

This is new to me, so now learning about the two types of testing for HPV. Remember, I have zero bioscience or medical background, just able to wade through boring papers to get a bit better idea of what is going on.

That said, there are two main prognostic tools:  HPV in situ hybridization and p16 immunohistochemistry. The second one is the one more commonly referred to as p16 staining. There are various paper, one which you cite, that get into the details of merits of each type of test. Which is actually better or the actual pros/cons of each is way over my head. I did find this reference from the Mayo clinic which delves into the topic a bit more http://www.mayomedicallaboratories.com/articles/hottopics/transcripts/2012/03-hpv-p16/index.html.

Here is a definition of HPV which makes sense to me:

Human papillomaviruses are encapsulated, nonenveloped, double-stranded DNA viruses that are members of the Papillomaviridae family. This family has well over 100 subtypes, also known as genotypes. These genotypes have different profiles, including variable tissue trophism and biologic roles in human disease. The different genotypes are broken into low- and high-risk categories. The more common low-risk genotypes are 6 and 11 while the more common high-risk genotypes are 16, 18, 31, and 33. Low-risk genotypes are frequently associated with benign neoplasms such as squamous papillomas; on the other hand, high-risk genotypes are more commonly associated with malignant neoplasms such as squamous cell carcinoma.

What this indicates is what I said earlier p16 is a type of HPV. So, it is not possible to be p16 and not HPV. I think the confusion has to do with the two main tests. The HPV ISH test appears to return negative results when p16 is actually present. So, the statement is made HPV negative, p16 positive - this is test results that conflict with each other.

From what I read, it appears the staining test is more accurate and that is what you hear most "p16 staining", not HPV ISH. That is not to say ISH testing is not done but staining sure seems more common.

Take all of this with bags of salt as this level of detail about HPV testing is a topic I never got into. I just knew about the staining test and that p16 is one quite a large number of viruses grouped and known as HPV.

Best to you. Let me know what else you discover. :-)  don

 

 

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