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Ambra Offline OP
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I am not sure if this is the right place for this topic, and I apologize if it is not, so please feel free to move it to a more appropriate place in that case. I also apologize if this has already been discussed in the past, I searched and could not find it.

I have been extremely conflicted about telling by ex boyfriends about the whole HPV thing since learning about it.I have asked a bunch of medical people, talked to friends, even counselors, and still do not know what to do.
The doctors say that I am in no way obliged to disclose this by law and in general their answer is no, but things are not that black/white correct? Obviously, one can never know whom one got the virus from, or when, or a lots of other things.
I can not help but feel that it is my moral obligation to disclose this as ultimately, these men might end up going through something similar some years down the line, and I would feel horrible if that happened and I never warned them to get checked etc.
Most of my friends think that I should tell nothing. There are very few people to tell, and each case, at the end of those long relationships I was left quite heartbroken, I am not friends with them, we do not even talk etc. I really do not want to have to talk to either of them ever again. I am very scared of their reactions: that they might get really mad and yell and accuse me of transmitting them the virus, that they would rather not know, etc. On the other thing, I think I would be able to sleep better at night if I did tell. But I know that there are no clinically approved tests for men for HPV (or am I wrong?). And my most recent ex-boyfriend is a heavy drinker and occasional smoker, which I well know increases the risk. For all that is worth, my cervical HPV tests came negative which makes the whole situation even more bizarre for me.

So what are your thoughts? Should one disclose this? Would you want to know if the situation were reversed?

These are people I used to love at some point in my life and despite everything I would never want anything bad to happen to them. Sigh...


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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klo Offline
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Short answer is NO. Long answer is also NO.

Over half the adult population of America will have come in contact with HPV by the time they are 50. The vast majority of people who are infected manage to clear the infection within 12-18 months. Most people can be infected multiple times and be no worse for wear.

A very small fraction of people (less than 1%) are unable to clear the infection and develop cancer as a result.

Unless your friends took a vow of celibacy immediately following their relationship with you, their normal adult sexual practices will put them in contact with HPV as well as a host of other infections. Some of them will be short term annoyances such as colds or gonorrhea whilst others might be slightly more threatening such as hepatitis or HPV. Either way, unless people are going to lock themselves away and abstain from socialising with other human beings and having sex, there is no avoiding "catching stuff".

To start apportioning blame, or place yourself in the firing line is pointless and achieves nothing. Let your exes take responsibility for their own health and remember that their chances of being hit by a bus are much much higher.

Ambra, you need to take time to think about what your needs are right now and not waste energy worrying about others. Leave the past where it is and concentrate on yourself.

PS HPV infection in the oral cavity does not link to HPV anywhere else so it is no suprise that there is no evidence of infection on your PAP.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
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Ambra,

When I first this post, I did not have a position on this but after reading Karen's post, I was reminded of the fact that a very high percentage (I think higher than 50%) of people get the HPV virus along the way.

The issue is not getting it, the issue that very small percentage of us who do not clear it and it fires off the cancer.

The odds you passed it to them and they were also in this very small club is statistically really remote. So, I think it could only get a lot of feathers flying by doing what you were thinking.

Let it go and get ready for the wild ride to come with rads. There is lots to do to stay on top of it. take care don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Ambra:

I am going through this same question with my past girlfriend. Should I tell her, should I not.

I already have one short answer on the forum because I broached the question in my blog; and that is to concentrate on the bigger picture right now, ie the upcoming radiation treatment. Worry about this small stuff later, if at all.

And then Karen and Don weigh in with more detailed answers, both of which make a lot of sense. Think of it this way, even if a past boyfriend ultimately turns up with HPV-16 positive oral cancer. Do you know absolutely for sure that it was you that gave it to him...you don't know that at all as you don't know his history before or after you.

Thanks for asking this question; it made me rethink it again. Now, I'm 99% sure my answer is say nothing to past flames.



Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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I believe I read somewhere along my HPV learning path that by age 50 over 80% of females tested positive for HPV. That test was for Cervical HPV as there was no oral HPV test at the time. There is much we still do not know about this virus but we do know that we constantly pass it back in forth through various forms of sexual activities and our bodies constantly clears the virus. Sometimes (rarely) it doesn't for reasons still not clear and the virus is allowed to turn our cells to the dark side.

Point is unless one is totally sex free from the get go they will come in contact with the virus so please don't pin the HPV virus outbreak on you. Other than advocating for the Gardasil vaccination for all boys and girls I would remain silent.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Ditto the above. Besides, one of those past flames, short duration or long, was the person from whom you got the virus. The best we can do is to continue to be advocates for Gardasil for young people and generally spread awareness of H&N cancers.

Best advice you've got here is to concentrate on yourself. We're here to help.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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I'll chime in also. My MO made a point to say I probably was exposed in my early 20's, was contagious for a bit and didn't know it, my body finally killed it off and I've lived my life to now being neither contagious nor able to contract it again. The main point he made was trying to figure out who I got it from or who I may have passed it to is fruitless in a world where >80% of the people in our demographic have been exposed.

I know you said you feel you have a moral conviction about telling but there is no screening available to tell if you'll get this cancer. You just do one day for reasons that are still unclear. Also, you have no way of ever knowing if you were the one who transmitted it and quite frankly you may not have anyway.

Like others have said: focus on the next several months of YOUR life. This is the most important thing you can do right now.

Best,

-Rich


47, Non-smoker, moderate drinker
7/13 Found a lump on my neck
8/08/13 Dx HPV 16+ SCC right tonsil
8/19/13 Biopsy and neck dissection, 38 lymph nodes removed 2+ for cancer
9/23/13 Start 33 radiation treatments & 4 x Carboplatin/Taxol, 3 x Taxol only
11/07/13 Last radiation treatment
01/03/14 Post treatment CT scan looks good
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I've posted this before but I was HPV+ and my wife of 27 years is not. Take those feelings and energy and direct them towards education and support!


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
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Its very possible a partner has also been HPV+ but their body cleared it. For example see ChrisN's situation in the post above, its very possible his wife has been HPV+ at some point in the marriage but her body was able to rid itself of the virus while Chris's wasnt.

The more we learn about HPV, the more we see there is to learn.


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
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If only we knew more about the HPV/oral cancer mechanism, these decisions would be easier. Since it's currently impossible to determine exact exposure source, I agree with the advice that informing former partners is not the answer.

The problem is not who gave it to whom, but why some individuals do not clear it.

Do we even know how long until HPV can present as cancer? Rich's post indicates that his MO believes it could be 20 years. I also have read that lengthy "incubation periods" are a possibility.



CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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My advice is NO, NO, NO. One of them gave it to you, you need all your strength and mental fortitude to win the WAR you are in right now and NOW is the only important thing you need to take care of!!! Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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Ambra Offline OP
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It seems that the opinions are pretty clear towards one big NO.

To add some extra info, and I apologize if it is TMI, in my particular case, both doctors and I myself think we can have a good guess of whom/when I got it from. Long story short, I was in my first relationship with first boyfriend for 6 years, and in year 4 Gardasil came on the market and my doctor offered it t ome, even though I was above the age of 26. So I had Gardasil, all the three doses. As we know, it doesn't protect you if you have already been exposed to those particular HPV strains. So some of the doctors and a world-known HPV epidemiologist I was able to talk to think that most likely I got it from the first boyfriend (the odds!), with some small possibility of getting it even earlier through some activities such as kissing/drinking from the same straw that to my knowledge carry some low risk of oral transmission, though nobody is yet certain just how big the risk is.

So since it looks fairly certain that I got HPV before I had Gardasil, that is why feel morally obliged to disclose the information to people I have been involved with after the first boyfriend.


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Ambra dear, give yourself a break. An unequivocal "NO". Focus your energies on your own well-being. It's not that I think you are not morally obliged to do so - I just don't think it's necessary.


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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[quote=richl796]I'll chime in also. My MO made a point to say I probably was exposed in my early 20's, was contagious for a bit and didn't know it, my body finally killed it off and I've lived my life to now being neither contagious nor able to contract it again.

-Rich [/quote]


I don't believe you were given the correct advice. According to the HPV research scientists I speak to we are NEVER immune to it due to exposure. We can acquire it and clear it countless times throughout our lifetime. That's why the Gardasil Vaccination is Soooooooo important.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Interesting topic.

I'm sure I contracted HPV in my youth. I had no idea I had it until the pathology of my tumors came back. Initially, the pathology from my 1st tonsillectomy didn't reveal it (nor was the primary ever found).

Contacting past partners from my 20's on is just NOT going to happen logistically and otherwise. I don't even remember some of the names for goodness sakes! (I partied A LOT in those days ~lol~).

That being said, there are those I truly loved in my life but I have no idea where they might be nor do I feel compelled to even look at this point. My partner and caregiver (and soon to be fiance') knows about it so that's what counts.

Personally, I don't feel it's necessary to tell past partners but it's your own personal decision. Good luck in whatever you decide.

"T"



57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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