On 1/10/12 I had an laryngoscopy done to remove tissue for a biopsy. Came back cancer (invasive squamous cell carcinoma). When doctor gave me the diagnosis - she briefly threw out that they thought maybe HPV was an issue/factor. She gave me only 1 of 2 pages of the path report (the page that didn't show anything about HPV) grrr..... Then I met with an oncologist to discuss radiation. Asked him about HPV. He said that he didn't think HPV was related. Then met with a surgeon - he said the cancer was probably related to second hand smoke? (did he even review the path report?!) So I had surgery (partial laryngectomy) on 2/1/12. As of my post op appt on 2/7 - surgery was a success. The surgeon said that he got all the tumor, plus clear margins and biopsies of surrounding tissue came back clear (no cancer). and *still* no mention of HPV. That brings us to last week. I met with my primary care physician and she reviewed the path report and informed me that the tumor tested postive for HPV (here is the exact wording on the path report: 'The tumor cells show nuclear positive hybridization to HPV high-risk probe.')
So, that created a whole new set of questions, concerns and fears. I have tried to ask my doctors these questions but seem to get the run around. I am just surprised why the doctors would not have discussed HPV with me? Is it not an issue? It doesn't matter? Can't link my cancer to the HPV?

I guess my main concerns are HPV and recurrence? is recurrence greater when HPV is involved? Will HPV always be an issue/factor?

Should I just let this go? and be happy with my victory right now. I'm driving myself crazy with all the research and wondering what I should do? :-/

How do I find out what 'strain' of HPV I have. Is 16 and 18 the only oral HPV? I asked the doctor how we can find out (what strain it is) and I can't even get a clear answer on that?

If the path report said it tested positive for HPV Relation YADA YADA my guess would be it is definitively HPV SCC - since you were stage 1 then you may not require further treatment however standard treatment for HPV related cancer is often radiation and chemo, and depending on the drs they may operate prior to treatment. You should be seen at a ccc, where they have experience with this kind of cancer. Please do keep an eye on your nodes and go for regular check ups - I would also go back to the drs. That kinda steered you wrong and point to the path report where it says - HPV etc..

Good luck!l hope you're done with it all.

Thanks Cheryl. I've been hounding one of my doctors to get answers. I asked for a second opinion on my path report (about a month ago). Well, now that I'm questioning the HPV status - I've been told there was a 'typo' on the path?! *sigh* and we'll have an addendum in about 7-14 days. so I guess the latest information is that the tumor still tested positive for HPV - 'but there is no evidence of the strains associated with a poorer prognosis' (doctor's words) I guess that should make me feel better? I'm just confused and don't even know what to believe anymore. I am going to a leading cancer center in Northern CA and have an appt next week. Hoping to get answers then.
Thanks again for taking the time to respond

Hi Annie,
My husband was also diagnosed with SCC that was HPV+. The prognosis is actually better with HPV related SCC, but there IS usually chemo and radiation involved. We had a ton of both. Our first follow up ct was clear and he was stage IV. We had a PET scan on the 12th and will get the results tomorrow. Praying for clear!!
I am SO glad you are going to a major cancer center. This cancer is VERY aggressive and moves quickly. Don't hesitate to do the chemo and radiation. Just because they took the tumor and it had clear margins doesn't mean there aren't tiny cells in there. Not to scare you, but kill it all baby!!
One other thought. Since you have OC and it's HPV related, I hope you are faithful doing your pap smears. It is a sexually transmitted disease and oral sex seems to be the primary way to contract it when it involves oral cancer. Kevin had oc and I now have had abnormal paps which are HPV related. I am on a follow up next month and may be needing a hysterectomy as cervical cancer is almost ALWAYS caused by HPV. My husband's ex had it 17 years ago. I guess the crap hangs on for years!! Just FYI.
Keep in touch with us as things happen!!
Blessings,
Kathy

Thanks Kathy. I often wondered after surgery if I should have done radiation too. The doctor didn't seem to think it would be necessary - so I went with that. I thought my prayers were answered by *not* needing radiation. Next week is my 6 week follow up appointment and last weekend my throat started to feel 'different' ... like there was a lump in my throat. A symptom I had before I was diagnosed. So, now I am worried.
I do make sure to get my pap smears done. Last one was June of last year and came back HPV negative. That has been one of my questions, if I have oral HPV...will I most likely get cervical HPV as well?
I'll be praying that your husband's PET comes back clear. Best of luck. and thanks for sharing your situation with me.

Annie, everything I was told at diagnosis and by my RO and MO since, and everything I've read here at OCF and elsewhere, all conclude that HPV+ SCC generally reflects a better outcome than HPV- SCC, as Kathy notes above. So if you are indeed positive you're at an advantage.

You've already been through a lot and you certainly don't want to consider further therapy that you may not need... HOWEVER, as Cheryl says, standard treatment (which of course varies by individual) does call for further radiation and/or chemotherapy, which they do to make sure they've got all the microscopic cells killed deader 'n dead.

All of which is to say that the wisest course right now is the one you're taking: going to a CCC. Hmm, well you actually wrote "leading cancer center", so I guess I shouldn't assume! But it sounds like a good thing and I'm confident they'll have some wise advice for you.

Hang in there!

Kevin's PET came back with a hot spot. Doing an MRI next before a biopsy. Stressed but Eric has been teaching me this new technique. I think he called it BREATHING!!!!

Hopefully it's just and infection or healing area, do breath!!! It's an important body function! Seriously though you know they're bad for false positives, hugs and prayers it's nothing.

Hi Annie, First off welcome to the family. What I learned through my ordeal is that there are 144 strains of HPV and yes... #'s 16 and 18 (more rare) are linked to oral cancer and probably do come from oral sex. These however are different strains than the ones that cause genetial warts and cervical cancer. BTW... about 85% of the planet is walking around with some form of HPV or another. Your doctors are able (notice...didn't say will) to tell you if you are HPV16 positive AND if your cancer was P16 driven. You will also want to ask about a BCL2 marker and how diferentated your cancer cells were. If you don't feel like looking these things up, ask me and I'll tell you what I know. AND...yes the HPV16 caused cancers are VERY curable. Way better than if you were negative. Don't lose conection with the survivore on the wonderful forum. They saved my ass.

Will

Actually the big HPV's in cervical cancer are 16 and 18, and in the mouth it is primarily 16. There is a distinct clinically proven survival advantage to HPV+ disease in the mouth vs tobacco origin disease, (as others have stated above) and this is likely because it seems to respond better to radiation. So that survival advantage has NOT been proven in patients that do NOT have multidisciplinary treatments that omit radiation.

Oh....and definately listen to what Brian says as well as to the other senior members here on OCF. I learned a lot while going through my journey with cancer but these are the folks who REALLY know their stuff. (Hi Brian

Will

Not true. Cervical cancer is HPV 16 too. At least they told me that's what mine is, unfortunately! The HPV that causes warts is not though.

Kathy, you may not have read Brian's post correctly. "Actually the big HPV's in cervical cancer are 16 and 18"

I was actually responding to what Mainewill said about cervical cancer not being HPV 16. I hadn't seen Brian's or the others at the time. Oops I guess.

Well don't I feel like a dummy. I was going on what my RO told me about the strains. This is a reminder to me that in most cases the folks here on the OCF are far more helpful with information that medical professionals. Glad to be back and cancer free.

Will

Sadly it's cuz we are living it!! So encouraged by your cancer free. I have family in Brunswick and Nobleboro and some in between. LOVE Maine.

Hi Will, thanks for the info. Would you be available to talk to my doctors?! ha, ha. - because I seem to get NO where with them as far as my HPV status. They have basically blown me off and said it doesn't matter and it wouldn't change anything????? If you could tell me a little more about what P16 driven and BCL2 marker mean, I would sure appreciate the info! I've been doing my own research but sometimes it feels like my head is going to start spinning and I don't understand half of what I read.

Thanks!

Hi Annie

Alex and I had exactly the same battle with our oncologists and they gave the same excuse for not doing it as yours did. I ended up emailing the most senior one, making the following points
a) agree that HPV status makes no difference to treatment today
b) however, that is likely to be because we still don't know exactly what makes HPV different and respond better to treatment
c) who knows, in the future treatment of an HPV positive cancer may well be different to other cancers and I would be devastated if, in the event of a recurrence, I couldn't make the correct decision because Alex had never been tested (or in your case, not given the information about which type of HPV it was)
d) Alex and I have decided that we would definitely like this information for the future and would be grateful if Dr T could arrange this for us (gave him no choice)

They tested the original biopsy sample so Alex didn't even have to do anything.

A week later we were found to be HPV +ve and whilst it didn't change our treatment, it made Dr T start paying attention when Alex had a dramatic response - first to chemotherapy and then to chemoradiation!

Our cancer co-ordinator bailed me up during one of Alex's treatment sessions a few weeks later to ask me to share what I knew about HPV and oral cancer as Dr T had asked for testing on another 6 patients with similar diagnosis.

I thought that was a pretty big win and I remind Alex of this incident when he momentarily forgets my goddess status .

Karen
PS we did not get tested for the actual HPV virus as such but were tested for a marker of HPV type 16 which according to my reading, is a pretty good surrogate (on shaky ground here so unable to explain any better).