More long term effects discussion

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RE: More long term effects discussion

by MDyogi on Tue Nov 27, 2018 12:34 PM

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On Oct 14, 2018 5:33 AM Sdurnell wrote:

John, 

Your residual issues sound a lot like mine.  I'm nearly 8 years out, and my saliva is better but my voice is worse than at the 2-year mark.  The only difference is that I needed to gain back some of the 36# I lost, but that was accomplished several years ago.

Our HPV-related cancer has nothing to do with whether or not we might be able to transmit the virus, let alone whether a partner might develop cancer from it.  At some point you got the virus from someone, and that's all you know.  I encourage you to talk to your doctors, maybe your specialists rather than your general doctor, to understand and feel comfortable with your status.  I don't think it should be causing you problems.

It's rare for partners to both have HPV-positive cancers.  Most folks are able to shake it off, but for whatever reason a few of us get cancer.  

Susan

Late to this thread.... my husband had HPV Stage 4 cancer in his tonsils.  I'm still not HPV positive.  But the long-term effects have been so very difficult.  Swallowing seems to get better after dilations (we've done two, so far this year, and they seem to be working) but the nerve pain up the side of his head and down his arms is pretty devastating.  Does anyone else get that, and has anyone found anything that brings any relief?  He's also got muscle spasms that pull at his face and mouth and have left parts of it numb.  

Any words of wisdom would be just so welcome...

RE: More long term effects discussion

by hisprincesstoo on Tue Dec 04, 2018 03:02 AM

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on being single and sharing this diagnosis with potential relationships, this is what I've learned.

HPV doesn't 'cause' cancer.  They don't fully know the connection.  in my reading, I believe it is just like anything else the immune system is already compromized, so cancer being the opportunistic thing it is, can thrive.

HPV is more common that most ppl realize.  It can be transmitted from any mucus membrane contact, not just sex.  the chances of getting it is very low if you haven't had sex nor your partner.  I don't know about all you, but I'm sure the number of ppl who have both made this decision is pretty small.  

by the time you have had multiple partners who have had multiple partners, that chance you have it shoot up to 90% quickly.  Plus there is no real test to say if you have it if it is not in an active mode.  You could very likely not have a clue you have it, had no symptoms.  The biopsy that showed us to have it was taken from the tumor.  what I was told is that the radiation kills it along with the tumor, so the chances of us giving it to someone else is actually less than the average person.  we are actually more in danger to get it from them is one way to think about it, though not exactly something I have told them  ;).

There are also over 300 different types of HPV.  Only a couple have this correlation with a tumor.  mine is 14, I don't remember the other 2 that is on this short list.  I have no idea if different ppl have multiple types.  I do know that my last pap smear checked for this, and was negative.

all this to let you know, all of us who are single here do have this type of reaction.  It is not an informed reaction.  One dr I talked to that spoke at a celebration of life for cancer survivors suggested I don't even bring it up, and she is the one who let me know I was in more danger than they.  I guess this is a personal decision.  I choose to inform also.  Is this why I"m still single?  not real sure, but for me honesty is the best policy no matter the consequences.  hmm  perhaps I need to check out a local throat cancer survivors group n see if there are any single guys there huh?  ;) lol

RE: More long term effects discussion

by Sdurnell on Tue Dec 04, 2018 11:52 PM

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On Dec 04, 2018 3:02 AM hisprincesstoo wrote:

on being single and sharing this diagnosis with potential relationships, this is what I've learned.

HPV doesn't 'cause' cancer.  They don't fully know the connection.  in my reading, I believe it is just like anything else the immune system is already compromized, so cancer being the opportunistic thing it is, can thrive.

HPV is more common that most ppl realize.  It can be transmitted from any mucus membrane contact, not just sex.  the chances of getting it is very low if you haven't had sex nor your partner.  I don't know about all you, but I'm sure the number of ppl who have both made this decision is pretty small.  

by the time you have had multiple partners who have had multiple partners, that chance you have it shoot up to 90% quickly.  Plus there is no real test to say if you have it if it is not in an active mode.  You could very likely not have a clue you have it, had no symptoms.  The biopsy that showed us to have it was taken from the tumor.  what I was told is that the radiation kills it along with the tumor, so the chances of us giving it to someone else is actually less than the average person.  we are actually more in danger to get it from them is one way to think about it, though not exactly something I have told them  ;).

There are also over 300 different types of HPV.  Only a couple have this correlation with a tumor.  mine is 14, I don't remember the other 2 that is on this short list.  I have no idea if different ppl have multiple types.  I do know that my last pap smear checked for this, and was negative.

all this to let you know, all of us who are single here do have this type of reaction.  It is not an informed reaction.  One dr I talked to that spoke at a celebration of life for cancer survivors suggested I don't even bring it up, and she is the one who let me know I was in more danger than they.  I guess this is a personal decision.  I choose to inform also.  Is this why I"m still single?  not real sure, but for me honesty is the best policy no matter the consequences.  hmm  perhaps I need to check out a local throat cancer survivors group n see if there are any single guys there huh?  ;) lol

I'd say that many people could be more put off by the thought that you might have a recurrence than anything, and they don't want to deal with that.

If it were me (and it's not, as I am long married) I'd wait until a relationship was looking pretty good to talk about HPV, and then only with printed evidence from a reliable source that the partner was not really at any more risk from you than from someone else.  Otherwise you may be scaring folks away for no good reason.

Susan

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