Previous Thread
Next Thread
Print Thread
HPV questions #198529
06-18-2019 09:12 AM
06-18-2019 09:12 AM
Joined: Jun 2019
Posts: 37
C
Cooper Offline OP
Contributing Member (25+ posts)
Cooper  Offline OP
Contributing Member (25+ posts)
C

Joined: Jun 2019
Posts: 37
Hi,

I know there is a wealth of info on here about HPV.and I’ve read a lot, if not all, of it... and then some. It seems that media has made it pretty clear that HPV plays a huge role in the development of certain oral cancers. Yet, as someone who is in the age bracket with an upsurge of incidences (35 yo), the 3 practitioners I’ve seen have addressed it as a smoking/heavy drinking disease. Only my PCP (not the two ENTs I’ve seen), mentioned oral sex after I brought up my history of HPV. It seemed a bit taboo and she was odd after I mentioned my concern having had HPV of the cervix and multiple oral sex partners from age 18-24. I was vaccinated when I was 25/26.

Because I sometimes misunderstand of get confused reading research I thought maybe some here may be better versed in the available info or have any personal knowledge of my questions. I hope I’m not asking too personal of questions here...

Of those of you dx with HPV+ cancer, have any had the HPV vaccine?
Of those of you dx with HPV+ cancer, have any of you also had HPV positive Pap smears?
Of those of you dx with HPV+ cancer, have any of you had HPV+ Pap smears at some point but since have been neg?

Is there any information regarding whether the body simultaneously clears oral and cervical infections (or infections of the male sex organs)? Or can the body clear one and not the other?

I’m sorry if these are intrusive questions. I’m not sure if HPV testing is done during Pap smears beyond a certain age. I still have HPV testing done because my office does a combo as a standard.

I had HPV around 22. Had a follow up procedure which revealed no precancerous lesions. Had a follow up Pap within the year and it was negative. Had yearly paps for several years... maybe almost a decade. All were neg. waited 3 years and just had one and it was also neg. Only partner since 2010 has been my husband. This HPV thing just has me scratching my head a bit.

Re: HPV questions [Re: Cooper] #198530
06-18-2019 11:55 AM
06-18-2019 11:55 AM
Joined: Oct 2012
Posts: 1,121
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,121
Toronto, Canada
Please understand that we are not research scientists and so we can’t really respond to your questions about HPV, we don’t know how to. What we have is just personal experience through diagnosis and treatment. We also cannot account for your doctors’ reactions and perhaps the best people to ask about that are your doctors. Your best course of action is to wait for your CT and take it from there.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: HPV questions [Re: gmcraft] #198531
06-18-2019 01:30 PM
06-18-2019 01:30 PM
Joined: Jun 2019
Posts: 37
C
Cooper Offline OP
Contributing Member (25+ posts)
Cooper  Offline OP
Contributing Member (25+ posts)
C

Joined: Jun 2019
Posts: 37
My apologies, certainly didn’t mean to offend anyone.

I just had read some old threads with some really informed information from research studies and didn’t know if some folks on here who are more current with research knew anymore or could point in that direction.

My questions were more from a personal perspective, but I understand how my inserting my doctor’s lack of discussing this as a possibility misconstrued my intentions.

Re: HPV questions [Re: Cooper] #198532
06-18-2019 01:56 PM
06-18-2019 01:56 PM
Joined: Jun 2013
Posts: 337
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 337
alabama
If you just want personal anecdotal information, I can tell you this ... I never once tested positive for HPV before the cancer. I also never had any of the at-risk behaviors. This leads me to believe, personally, that there are transmission vectors as yet unexplained (during birth? who knows?). Never vaccinated, but at my age, it seemed pointless... I'm now in my 40s. One partner, and I'm his only partner too. Go figure.

I don't even disclose my HPV status when discussing this cancer to anyone outside this forum (except the few doctors who need to know) because it leads to all sorts of assumptions that aren't helpful in the slightest. It's a cancer, and it needed treating. If I did have behaviors, they were over and done anyway ... though I didn't. (I'm not even a drinker or smoker. Totally boring in most medical regards.)

And to my knowledge, it's never showed up on a Pap smear test afterwards, either, come to think of it.

Make of that what you will. Certainly my cancer docs didn't know what to do with it. smile


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: HPV questions [Re: Cooper] #198539
06-18-2019 08:30 PM
06-18-2019 08:30 PM
Joined: Jun 2007
Posts: 10,369
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,369
PA
I would suggest discussing your specific questions with your doctor. Our group is made up of oral cancer (OC) patients/survivors and caregivers. While some of our members are HPV+, many are not and some have not been tested for it. OCF is devoted to helping OC patients and their caregivers, we do not always have info about other ailments, even HPV.

OCFs members can not replace info that comes directly from a doctor. Hopefully your doctor is up to date with their HPV (which is an STD) knowledge!!! We do NOT have medical backgrounds, years of medical education, clinical patient experience, etc. Many years ago, OCF's founder met a young researcher Dr Maura Gillison who is behind most of what we know today. Theres still much more that is unknown about HPV than is known but more is being discovered all the time. If you click on any of the highlighted HPV initials, you will be taken to OCF's HPV info where you can read many, many pages of info.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: HPV questions [Re: ChristineB] #198541
06-19-2019 06:22 AM
06-19-2019 06:22 AM
Joined: Jun 2019
Posts: 37
C
Cooper Offline OP
Contributing Member (25+ posts)
Cooper  Offline OP
Contributing Member (25+ posts)
C

Joined: Jun 2019
Posts: 37
Thanks. I certainly intend to discuss this with my doctor. I can only infer that it was low level of suspicion that resulted in her reaction... and possible surprise that I already had a wealth of knowledge. I am a researcher by profession so I have done my fair share.

I definitely wasn’t asking nor expecting for anyone here to explain the research to me. In my previous follow up message, I reiterated that. I have read all of the info on HPV on this site. I was searching (in a curious way) for more anecdotal information for anyone who cared to share. Otherwise, I just didn’t know if some here who have indicated they follow the research more closely, had any more up to date research to point me to. This is continuously evolving and has even evolved in just a few years.

Again, I apologize for my questions.

Re: HPV questions [Re: Cooper] #198544
06-19-2019 08:52 AM
06-19-2019 08:52 AM
Joined: Oct 2012
Posts: 1,121
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,121
Toronto, Canada
Please understand that some of those who posted on the old threads are unfortunately no longer with us and others have moved on with their lives. If they haven’t posted for a long time, it means they don’t check the forum on a regular basis anymore or are no longer interested in the subject. Please allow them that.

As for anecdotal evidence, you as a professional researcher would know that it’s not going to help you much. Everyone is different when it comes to oral cancer. This includes diagnosis, treatment, reactions to treatment and recovery. You are not likely to find anyone whose information is the same as yours.

If you would like up-to-date information, you should be looking in medical/scientific journals. Here, we are really ill-equipped to provide the info you’re looking for.

Last edited by gmcraft; 06-19-2019 08:57 AM. Reason: Typo

Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: HPV questions [Re: Cooper] #198548
06-19-2019 02:53 PM
06-19-2019 02:53 PM
Joined: Sep 2018
Posts: 15
R
Rabbit Offline
Member
Rabbit  Offline
Member
R

Joined: Sep 2018
Posts: 15
I understand what you are saying. Here's my anecdotal, non-scientific, "not-a-doctor-so-please-don't-sue-me-for-sharing-my-experience" experience. LOL! wink

My experience with doctors was completely different from yours. My ENT told me before we even had the results back yet that it was either carcinoma caused by HPV, or lymphoma which is often caused by smoking. When the results came back as HPV, he said that it's good news because it is usually easier to treat and has a better prognosis. I asked how I could have gotten it and he said that from what we know right now, oral sex is the most likely means. He did me the favor of not looking embarrassed and continuing to talk about how we were going to treat this and how he has had many patients beat this, etc. so that I didn't have to just sit there with the oral sex comment hanging in the air. (He is a great doctor with an excellent bedside manner and a great surgeon as well - LOVE him!!). He said in his 20-plus years of experience, he is seeing more of this type of cancer, which makes sense because of the increase in the number of people who have more than one partner throughout their lives and who have oral sex.

Likewise, when I saw my ObGyn recently, I told her about the cancer and asked her if since I had the oral cancer, does that make me more likely to get cervical or ovarian cancer. She said not likely. She explained to me that about 90 percent of the sexually active adult population has HPV and the 10 percent who don't are two virgins who got together. She said that most of the time we fight off the virus but sometimes it gets the better of us and is able to grow more than our immune systems can fight off. But most of the time, our bodies fight it off. But that's why PAP smears are so important and the exam they do to feel for enlarged ovaries, etc. so they can catch things early when they are still "pre-cancerous cells." Again, HPV is extremely common and most people don't get any kind of cancer from it.

I have been tested for HPV in the past and it came up negative. But, my Gyn said that that doesn't mean anything other than it wasn't showing up right then. She said they look for pre-cancerous cells and treat those when they come up, which are often caused by HPV. Treating things quickly before they have a chance to turn into cancer is the way to go for that section of the body. I have had several of the pre-cancerous cells scenarios show up that had to be removed through cryosurgery. I don't know if they tested then for HPV or not. I do know that I was tested at least once and it came up negative (as I mentioned), but I don't know if they tested again.

So to be on the safe side, I've been eating very healthy foods and exercising. I'm also getting into meditation (well, trying LOL), just to stay as healthy as possible and give my body as much of a fighting chance as possible. My former sugar addiction, junk-food habit, exercise aversion, and high stress levels were a welcome-mat for cancer and heart disease and diabetes, and on and on and on. Well, I learned my lesson and now this body is a gated community! No more welcome-mat! LOL No more riff-raff (junky food and poor habits). Only the creme de la creme (healthy food and habits) for me! Ha ha! smile

Hopefully, (purely speculating of course) because of the vaccination, there might be less of this cancer amongst the overall population in the future. There are different types of HPV though and vaccines only cover some of them. There are probably types we don't even know about yet. I did not have the vaccine. I was too old by the time it came out. It was too late for me. From what I understand (and again, no doctor, so take this with a grain of salt), the vaccine won't get rid of an HPV that you already have. It just helps prevent the strains of HPV that it inoculates against. They tested me for which strain caused my cancer and I'm embarrassed to say I don't remember which. 16? 13? Either way, even if there is a vaccine for those, I already have it so the vaccine won't cure me of HPV. That would be an awesome thing though, wouldn't it - if vaccines could cure as well as prevent?

Hopefully your doctors will educate themselves on the topic a bit more. They may have just been embarrassed by the subject, although I think it's crazy to be embarrassed. Smoking is a habit that makes you and those around you sick. Why shouldn't that be just as embarrassing?

Of course, this is only my experience and is not meant to represent anyone else's experience or suggest that anyone else will have similar experiences. (There. That's my experience AND my disclaimer!) grin

Last edited by Rabbit; 06-19-2019 02:58 PM.
Re: HPV questions [Re: Rabbit] #198560
06-20-2019 11:57 AM
06-20-2019 11:57 AM
Joined: Jun 2019
Posts: 37
C
Cooper Offline OP
Contributing Member (25+ posts)
Cooper  Offline OP
Contributing Member (25+ posts)
C

Joined: Jun 2019
Posts: 37
Thanks for your thorough response Rabbit. The information you gave me was precisely what I was curious about.

I honestly have no qualms about talking about my sexual history with doctors or anyone really, other than maybe my parents... it was disappointing that 3 providers didn’t bring it up with me! Especially with the information out there about my demographic being particularly more affected than previously. I will admit, ENT #1 saw me before these recent concerns... I don’t know what my tonsil looked like then. He and the other ENT who I saw my recently, are faculty at Harvard Med School. I’d suspect they are educating students on HPV correlation. Or I’d hope. In fact, just the other day, Mass Eye and Ear shared an update on HPV. Both have 20+ years experience.

As I mentioned, I have had a HPV positive pap about 13 years ago. But the following year and ever since, I’ve been negative. There is so much info out there that my head spins. I am a researcher, but my scope is less about pathology. I saw really recent information that the presence of antibodies actually was a risk factor for HNC whereas previously, it was said antibodies was a protector. Unless I’m just really really bad at interpreting lingo (which is a strong possibility.)

I’m not sure how old you are but I suspect not much older than me... I felt the immediate response was “you’re too young”. Even the nurse was curious why I was there. I’ve got this before - when I had a mammogram and when I had a colonoscopy. It’s discouraging to me when symptoms aren’t fully investigated due to age because of low level of suspicion. Or maybe I’m just misinterpreting all of it. Anyway, I’m rambling, thanks again for providing your info regarding HPV history.


Support OCF


Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,369
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,744
Newest Members
Annie H, hfg, andz, Beter, Tammie C
12166 Registered Users
Forum Statistics
Forums23
Topics17,562
Posts194,081
Members12,167
Most Online306
Aug 21st, 2016
Brag Box
Powered by UBB.threads™ PHP Forum Software 7.7.1