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#147111 - 03/14/12 05:11 PM frustrated and have HPV concerns
annie2012 Offline
Member

Registered: 01/24/12
Posts: 21
Loc: Sacramento, CA
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. frown 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? :-/
_________________________
1/10/12 laryngoscopy
1/12/12 diagnosed with laryngeal cancer (T1N0M0) HPV+
2/1/12 had partial laryngectomy
2/7/12 post op appt. surgery seems to be a success (no other treatment needed). Praise God! smile smile smile
3/20/12 6 week follow up. all seems to be well

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#147113 - 03/14/12 05:25 PM Re: frustrated and have HPV concerns [Re: annie2012]
annie2012 Offline
Member

Registered: 01/24/12
Posts: 21
Loc: Sacramento, CA
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? frown
_________________________
1/10/12 laryngoscopy
1/12/12 diagnosed with laryngeal cancer (T1N0M0) HPV+
2/1/12 had partial laryngectomy
2/7/12 post op appt. surgery seems to be a success (no other treatment needed). Praise God! smile smile smile
3/20/12 6 week follow up. all seems to be well

Top
#147115 - 03/14/12 08:08 PM Re: frustrated and have HPV concerns [Re: annie2012]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4847
Loc: Toronto canada
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.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#147124 - 03/14/12 10:25 PM Re: frustrated and have HPV concerns [Re: Cheryld]
annie2012 Offline
Member

Registered: 01/24/12
Posts: 21
Loc: Sacramento, CA
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 smile
_________________________
1/10/12 laryngoscopy
1/12/12 diagnosed with laryngeal cancer (T1N0M0) HPV+
2/1/12 had partial laryngectomy
2/7/12 post op appt. surgery seems to be a success (no other treatment needed). Praise God! smile smile smile
3/20/12 6 week follow up. all seems to be well

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#147125 - 03/14/12 11:25 PM Re: frustrated and have HPV concerns [Re: annie2012]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
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
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

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#147137 - 03/15/12 01:36 AM Re: frustrated and have HPV concerns [Re: KP5]
annie2012 Offline
Member

Registered: 01/24/12
Posts: 21
Loc: Sacramento, CA
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. frown
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.
_________________________
1/10/12 laryngoscopy
1/12/12 diagnosed with laryngeal cancer (T1N0M0) HPV+
2/1/12 had partial laryngectomy
2/7/12 post op appt. surgery seems to be a success (no other treatment needed). Praise God! smile smile smile
3/20/12 6 week follow up. all seems to be well

Top
#147152 - 03/15/12 03:49 PM Re: frustrated and have HPV concerns [Re: annie2012]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1259
Loc: Los Angeles
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!
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage II TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 5 years all clear in 6/14

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#147173 - 03/16/12 02:15 AM Re: frustrated and have HPV concerns [Re: David2]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
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!!!!
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

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#147196 - 03/16/12 05:07 PM Re: frustrated and have HPV concerns [Re: KP5]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4847
Loc: Toronto canada
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.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#147200 - 03/16/12 05:47 PM Re: frustrated and have HPV concerns [Re: Cheryld]
MaineWill Offline
Senior Member (100+ posts)

Registered: 03/01/11
Posts: 124
Loc: Portland Maine
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
_________________________
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG

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