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Ok, Im gonna say it.......returning to intimate relations

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

ok, Im soliciting answers from anyone from males with H&N Cancers as well as from their significant others. Do you ever get to really kiss them again? I know everyone is different,
but how long is an average time for sex, or is everyone realllllly that different?
Does a sex life exist anymore after all this "treatment" has beaten up the body??
Ive not seen anyone really comment on this. I know that people are worried and caught up with just trying to survive cancer, but when, not if, but when they do, is there sex after
cancer?

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

Like you already know everyone is different. And for a male i think 50% is mental. But i dont want to brag but i am 53 and married to a 23 year old costarican. She didnt like having sex while i still had my peg tube she was scared it would hurt me. But id say it was 2 to 3 months after radiation ended for me and no problems since pyhsically, mentally i still get depressed once in a while and will seem to lose interest but i can still perform if she needs me but my lack of taking the aggressive side i think confuses her into thinking ive lost interest .When its just my mind over thinking everything and worrying about our 3 year old son , money, etc etc.. add the cancer worries to that stuff and it can seem like its the furtherest thing from my mind, her being 23 she can still remember 4 years ago when we met and it was the first thing on my mind.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

To answer you question. Yes everyone is different. My husband has stage IV tonsil cancer and is 55 years old. I have to say, we were intimate throughout his treatment although not as frequent. He is one month out of treatment and we are intimate about once a week. So not too bad. It will get back to normal. Hang in there.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

Thank all of you for being so candid. When he was first diagnosed, but hadnt started treatment, he worried about me kissing him. Since it was all stemming from his mouth. I told him not to be concerned, cancer is not contagious, and all would be fine.
Then he started treatment, I didnt see him until the 2nd week of treatment, and by then dry mouth had set in, he was nausous, so miserable with other side effects already, he got most all that you can get by the 3rd week. You could tell he was disappointed when he said, that it was the furthest thing from his mind. He didnt like thinking that way because he is 61 and still enjoys the fun the same as he always has. But not right now. So I just wondered, like you have said, with men its 50% mental, if he will feel better in some reasonable amount of time after treatment stops. Not for me, Im there no matter. But for guys its different.
I just wondered about how long some of you all began to feel "in the mood" and like the guy you all used to be.

pk's picture
pk
Posts: 192
Joined: Aug 2009

More than likely things will become normal again - just be prepared for a new normal perhaps. We caregivers want to see our carereceivers recover faster than they possibly can and do need to realize that some things may not be quite the same. PK

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

What I want to know is if you get the cancer, oral cancer, and are HPV positive, did you get it through oral sex, and if so, is that going to change future sexual practice?

JGE
Posts: 50
Joined: Mar 2009

I would LOVE to know if there is anyone out there who has had HPV Squamous that NEVER had oral sex! There is almost NOTHING about this online.

I have read that you could have HPV16 or 18 for some time (years) and have no symptoms and then your immune system gets rid of it. Does that mean you could have gotten it from your mate and now your mate no longer has it? Or could you have gotten it from a kiss 20 years ago and carried it around until it caused throat cancer? If you still have it, can it cause throat cancer again? Not a reoccurance, but another NEW HPV throat cancer? What about oral sex now. Can you get HPV Squamous again from the same person? New person with HPV? Casual kiss? Sharing a drink?

My wife was so concerned about her involvement that she was tested for HPV and was negative. This made it even more confusing. Mine was never diagnosed as HPV Squamous but it just seemed to be the most likely explaination. Besides responding so well to treatment as HPV cancer does. The doctor told me in the beginning to HOPE it was HPV because of the better prognosis. If it was HPV then where did it come from?

This does go along with the original question about sex. If you can't answer these questions then you will have fear of the unknown forever. Definitely fear of oral sex. Be like a smoker being afraid to smoke after lung cancer.

What about the vaccine? They are giving young girls GARDASIL to protect against HPV 16 and 18 so they are not at risk of cervical cancer. HPV Squamous IS cervical cancer in the throat! Men don't have a cervics. Can I get Gardasil so I dont have to worry? So I can return to a normal sex life with my wife.

We NEED more answers about HPV 16 and 18.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

My lymph node/neck cancer, as in most cases nowadays, tested positive for HPV 16 in 2007. In fact, the HPV 16 positive finding is what prompted MD Anderson to warn me that the primary tumor most likely was a tonsil, most likely same side. And, yes they were exactly right. Had they not made that HPV 16 finding and told me about the tonsil my cancer probably would have advanced to a much more dangerous level. I think they saved my life.

So, as to the HPV 16, it is the leading cause of cervical cancer in women. In men, the "cervix" is their neck/throat (the word cervix is Latin for Neck.) I am told there are basically 2 ways to contract it.........oral sex with an HPV 16 positive partner, or congenitally from your birth mother in the womb or during your trip through the birth canal.

In my case, two observations: 1) my wife of 39 years is the only person I have had oral sex with and she tested negative, and 2) I was abandoned as a child and many years later looked up my birth family to discover that during the 9 months my birth mother carried me she was arrested several times for prostitution. This would have been late 1940's. Do, do you think there is a chance that she practiced unprotected sex? With me right there in the womb? Might she have been HPV positive? Duhhhhhh!!

From what I read, Squamous Cell Carcinoma is on the rise and certainly in large part due to HPV prevalence. SCC is a leading cause of lung cancer in non-smokers, HNC in non-smokers/non drinkers, etc.

There are many interesting websites you can google. Here are a couple......

http://www.oralcancerfoundation.org/hpv/index.htm

http://www.medicalnewstoday.com/articles/144786.php

HPV Positive SCC is truly a good news/bad news situation: Good news is that it has a significantly higher survival rate because it responds much better to treatment.

Stay well..............JK

PS: just had 2 yr. PET scan .........all clear. Thank you God, family, friends, the Medical Community..........and the CSN.

Wahooooooo!!

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Previous posts that may prove helpful:

http://csn.cancer.org/node/167887

http://csn.cancer.org/node/158416

One other comment, then I'll put my soapbox away. As to the earlier discussion of sex-after-cancer. Comes and goes with age, disposition, impact of recovery and treatment, etc. BUT, I think it is very clear that we need to shout from the rooftops the importance of practicing safe sex............and yes, safe oral sex. It has become so much more common over the generations (or at least openly admitted), but unfortunately HPV 16 Positive cancer (Cervical and HNC in men) has become so much more common as well. There is an obvious correlation.

Be careful. If you are known to be HPV positive it is your duty to act and protect others accordingly.

JK

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

... I suspect that somewhere, probably in Spain or the south of France, there is painted on the wall of a cave a 30,000-year-old depiction of a couple of Cro-Magnon folks engaging in oral sex. It's not like this is a practice that we've only just discovered.
That said, it is curious how HPV is now such a common cause of throat cancers. I have been faithful to my wife (and she to me) for decades, but my tonsil cancer was caused by HPV. She was tested for HPV, and the tests came up negative.
I could get right evangelistic about the need to vaccinate young men, as well as young women, for HPV. There's no reason anyone should have to go through the hell that I've endured (and many of you here) when it can be prevented with a vaccine.

--Jim in Delaware

JGE
Posts: 50
Joined: Mar 2009

You are in a similar situation as I am. Wife of 18 years, wife negative for HPV. Yet here we are survivors of Squamous. So, what do you do? Oral sex with the same person despite the fact that long term monogamous sex was supposed to keep you "safe"? Where did the HPV go? Is it in me? Still? Forever?

Even if you forget about the future of oral sex, what about our wives getting cervical cancer? Possibly from the HPV they had and got rid of OR the HPV that is lurking somewhere and caused our throat cancer. Wouldn't the other partner of a long term relationship where one partner had HPV Squamous be considered high risk for infection themselves?

Also I find it hard to believe that the only transmission is via mouth to genitals. I am sure if the mouth has touched the genitals then the disease can spread mouth to mouth. If you take that one step further, could it be infected mouth to glass or food?

There are holes in what we/doctors know. We need to know... now!

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

My observations after internally debating this issue for 2.5 years:

**A man or woman can contract HPV from their biological mother while in the womb or on the way through the birth canal.

**Once contracted, HPV can remain dormant for many, many years. In the majority of cases HPV-SCC surfaces during the 5th or 6th decade (I was 57), particularly in men.

**Many people go to their graves having been HPV positive all of their life and it never surfaced.

**Better than 80% of the world's population would test positive for at least one of the over 100 strains of HPV. A much smaller percent, thankfully, test for HPV 16 or 18, also referred to as "High Risk".

**I think it common that monogamous partners, one of which is HPV Positive, stay that way. But, as I understand it, for sure it can be passed through bodily fluids.

So, in my case (which sounds common among you already) I got it from my mother, it remained dormant fro 57 years, until then I never knew I had it. My wife and adult children do not have it. Go figure.

Still, I wish that more and more young people knew more about HNC related to HPV and would be careful. Vacinations are a great idea. Abstinance is also a great idea. But it probably all starts with education and that is also a big concern.

Soapbox duly stored.................JK has left the building.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

My lead doc said to go ahead and make all the whoopee that we want. From some things I've read, it's possible that those of us who got HPV-related throat cancer are genetically predisposed to it: That is, we may have a built-in weakness in fending off the effects of the virus. Our spouses, obviously, did not have that weakness.
But you know what? I'm really not going to worry about it.
Cancer? Been there, done that. Time to move on.

--Jim in Delaware

Judy.2's picture
Judy.2
Posts: 21
Joined: Jul 2009

I want to thank everyone who contributed to this discussion. I find it fascinating. The first time I even heard about HPV throat cancer, was about six months past my own treatments. It was discussed in a Reader's digest article that I just happened to pick up and see. I couldn't believe what I had read.
My doctors have never mentioned any of this to me. As a woman...am I as subject to this as you guys? Having had my annual Pap test done every year, and pass with flying colors, makes me think I was/am safe.
When I started this journey, I felt very put off by the fact that I had such a "dirty", "smoker & drinker" cancer. I wanted a pink ribbon, damnit!! I didn't want to tell anyone what I had...for fear of judgement..even though everyone I know, knew I never smoked, and was always a wimp when it came to alcohol. Can you imagine me explaining HPV to these same friends? Doubtful!
As I remember..at least in the state of California, 39 years ago, it was mandatory to get a blood test done, before a marriage certificate would be issued. I believe it was a test for communicable disease control. Is this a law, anywhere today? Maybe it should be!
Judy

pk's picture
pk
Posts: 192
Joined: Aug 2009

Please know, and I know that you do, this cancer can affect ANYONE!!!! Yes, some have smoked etc., but many of those who did, quit long ago and many non smokers also suffer from head/neck cancer. There is nothing to be ashamed or embarrassed about. No one is exempt from crisis in their lives. The best we all can do is face it and fight. It's beatable, curable, and your true friends will not judge.

Judy.2's picture
Judy.2
Posts: 21
Joined: Jul 2009

If I sounded judgemental. That is not my intent. I just wanted to share the feelings I had, during the first horrible days of shock and disbelief at my diagnosis. I guess, that it came during this time of year, when you see pink ribbons on just about everything, didn't help. I have yet to meet, in person, another woman who has dealt with throat cancer. Sadly, I know many who are dealing with breast cancer. I'll never know if my reaction to my cancer would have been any different had it been in my breast instead of my throat.
Today, I'm proud of my journey, and of my family, friends and doctors who have helped me through it, so far. I'm proud of every throat cancer survivor, HPV or not, that post on this site, and also their care givers. My fear is that, unless our young people do not become educated to this HPV threat, the day will come when it will be more common than breast cancer.
Today, I embrace pink ribbons, Relay for Life, and any other form that fights to end cancer for ALL of us.
Judy

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

As I understand it the conventional Pap smear does not screen for HPV. It does screen for "abnormal" cell activity which is a red flag that calls for further testing.

There is an HPV-DNA test that can be performed in conjunction with the PAP. But, I don't think it is routinely done unless indicated (i.e. history in family of HPV high risk). You may have to ask for it.

Also, I don't think conventional bloodwork screens for HPV 16 or 18. Again, I think that is done using the DNA tissue cell profiling.

I agree with all of you...................wish the younger generation could/would be more careful. But, quite frankly, I'm on to bigger and better things having walked away from this "train wreck" and darned proud, and very appreciative, to be alive and loving life.

Stay well amigos/amigas...................God Bless from Mexico. JK

JGE
Posts: 50
Joined: Mar 2009

HPV Oral Cancer video:

http://www.youtube.com/watch?v=JJY2ynlXoKA&feature=player_embedded

(Copy and paste the link to your browser address bar up top)

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

my gynocologist does a PAP and HPV test routine now for a couple of years. Both tests or 3, cant remember if its the last 2 or 3 years, mine have been negative, so I felt better when my guy got HNC. I kind of worried that maybe I could have had something to do with its development.

lyolan1
Posts: 95
Joined: Jul 2009

Hello Girlfriend, Great topic! I have only 4 treatments left. I have not felt like having sex since I had the surgery in August. First i looked like Frankenstein, then the tube,radiation and chemo. I just do not feel very "sexy" at the moment. I mean the tube and drymouth will wither anybody's sexual appetite. I am feeling much better, however, I do not see Mr. Romance returning until this tube is out, soon I hope. Overall, I feel confident that my situation will change soon. Alex.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Actually, Mr. Romance is on a temporary hiatus................he will be back with a passion.............(Pardon the pun).

JK

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

With everything going on in his mouth, he feels disgusting. He was so meticulous at taking care of his dental business. and now there is nothing he can do with the stench of dead flesh that it feels like in his mouth. plus the dry mouth, partial thrush, no tastebuds, not to mention the insane pain he has constantly, 24/7.
No wonder he doesnt want to hear it! And he kisses so nicely.
I understand that now isnt a good time, but he doesnt even like to look forward to food or kisses right now if he cant have it now.
Not to mention the rash all over his body, and after 5 chemo treatments, his hair, short as it is, began to lose the hair. He has 1 more week of double radiation, 1 more chemo, and a week of hydration more. Then he is done with this part. Next poss hyperbaric chamber??
we will see.
I just want him to look forward to stuff whatever it is. So right now I guess my username isnt so accurate, Im not really a girlfriend, but just caring friend.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Please keep this in mind: I compared my ordeal to a really bad train wreck that I was fortunate to walk away from but of course not unscathed.

Give him time. He is not himself right now. None of us are, including you caregivers. But "this too shall pass". You and he will likely never see the "old normal" again in any respect or aspect of your life. But, the really great news and cause for tremendous hope is that gradually you will both enter a "new normal". It may be similar or very different. Nonetheless, you will embrace it, cherish it and be thankful for it.

So, hang in there. I will absolutely guarantee you that he appreciates all that you do even though he may be unable to adequately reflect that.

God Bless and "this too shall pass".

JK

lyolan1
Posts: 95
Joined: Jul 2009

Hi Girlfriend, I was thinking about the topic further after my post. It could just be me, but, a healthy relationship is based on feeling good about yourself as much as feeling good about the other person. When your boyfriend feels better about himself, he will feel better about intimacy with you. Patience, love and support will lead to intimacy when this nightmare is over. I had 7 weeks of rad and chemo, I am almost done, feel pretty good, but this treatment was tough. Your boyfriend sounds like his treatment was more intense. Just be there and help, that is all you can really do. I remember my younger sister was giving me a ride to the hospital after I got de-hydrated, I was really sick and just broke down. She tried to comfort me with words of support, sort of Knute Rockne-esque, and it occurred to me that there are no words, just kindness. Alex.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

tried to post the other night. I dont want anyone to think Im some nympho and want to now exactly when and where and how much intimacy I can get. Its really not like that.
You are right in saying that he probably feels disgusting or grossed out himself, especially since he was so meticulous about his dental hygiene.
We have the added issue of being 541 miles apart anyway, so i dont know when I will get to see him as of course its his call. He is very protective of his heart anyway. Neither one of us does life very easily. lol!
Im sure everyone is right. He will be ready when he is ready and feels good inside and out.

thanks everyone!

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