CSN Login
Members Online: 14

How to cope with the shame/blame of anal cancer knowing it's often caused by HPV for Men and Women, Higher in Gay Men

kirby77
Posts: 48
Joined: Jul 2012

I am experiencing some self shame and blame associated with anal cancer and it's potential cause rooted in HPV infection. It's compounded by being a gay man with HIV (dealt with that).
Have you all experienced the self shame/blame game of having this disease? How do you answer the why? How did you discover it? I know friends and family once they know what you have they research it too, and question maybe not directly.

Other questions or experiences I have not seen shared here have to do with Gay Men and what happens after treatment? Recently a very brave man discussed ED and his loss associated with intimacy and performance, I was very heartened by the support around this topic by both men and women. The ladies here have not held back when it comes to discussing difficult to approach topics from dilation to pain.

What's taboo, and what's off limits and how do you answer the what, why and how did it happen?

jessicaad16
Posts: 7
Joined: Aug 2012

I don't know what youre going through. I'm a healthy 22 year old women, but when I read your post. My heart melted. DO NOT feel any guilt. Fight. You are in my prayers.

eihtak
Posts: 868
Joined: Oct 2011

Please do not let yourself or anyone else let you feel guilty or shameful. This happens because we are human. The HPV vaccine has only recently been encouraged, so most people here have never been vaccinated, and even so it does not mean one will never have active HPV. Also not all anal cancers are a result of HPV or a particular lifestyle choice or particular sexual activities. When I first researched some of the causes of anal cancer I kind of laughed, I did not fit the picture at all, yet was diagnosed with Stage3B. I think its a matter of educating the public on this little talked about cancer, and that will take time. I try to work it into appropriate conversations and get the word out there whenever the opportunity presents itself. As far as Gay Men having relations (sexual) after treatment I can not help, other than the fact that everyone is different in how they heal. This cancer does take patience and time, and help from others who have been there. To me nothing on this is taboo, but there is a time and place to talk about things, the what..a tumor in my anus, the why..thats life I did nothing to cause this and no vaccine was available when I was young it could happen to you (whoever I am talking to). Unfortunately there is just so little public knowledge about this right now but I do think we will be seeing a change in the near future as more HPV related diseases are diagnosed. I will have you in my thoughts and prayers to be strong and able to rise above any guilt you are feeling.

torrance
Posts: 118
Joined: Jan 2012

Who said that either of these is required? Don't take yourself there or let anyone take you there. Even if you had been educated and knew how to prevent this, doesn't mean you still wouldn't have got it. I have NONE of the common factors...no HPV, no anal sex, no smoking only one sex partner my entire life and I got it. I am certainly not ashamed, nor can I blame anyone. You are in good/great company here, no limits on what you want to ask. Each of journeys is different from beginning to present. I do not really think the journey is over as the side effects are always with us.

Joanne

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

There are things about anal cancer that make it difficult to accept, let alone talk about. I always like to refer to it as the "yuk" factor. I have found that talking about my anus gets some really weird looks from people. They just do not want to discuss that part of the anatomy. I mentioned this to my colorectal doctor one time and she reminded me that everybody has one--good point. Of course, then there is the stigma attached to this disease. People are woefully misinformed about it, thinking that it's caused solely by having anal sex or numerous sex partners, neither of which is true. People who have none of the risk factors can still get this disease--I am proof of that. As far as the HPV factor, statistics show that approximately 80% of the population over 50 years of age has at least one strain of HPV. It is easily passed from one person to another--only skin-to-skin contact is necessary. I just read in Men's Health Magazine that currently 16% of ALL cancers are HPV-mediated. I doubt if many people know that. HPV cancers are on the rise and one day it will be impossible for the medical community and the general population to ignore this. Sadly, many young people who currently practice what they see as "safe" sex, primarily oral sex, to avoid pregnancy are going to contribute to a rise in the numbers. Even more sad is the fact that it takes an epidemic (for lack of a better word) to get attention turned to these diseases. All that said, please do not feel shame.

I can not give you any advice regarding what happens after treatment for a gay man. However, I do not see that as a taboo subject if there can be an exchange of information with someone who can help you with that question. We are here to help one another--period.

MyHopen413
Posts: 38
Joined: Mar 2012

Yes, I felt shame, or at least like I had caused my cancer by smoking or perhaps I had HPV at some point and didn't know it. I quickly decided, though, that those were negative thoughts and negative thoughts were not going to help me get well. As far as telling people, I didn't. I told a few close people and my family. Some people would ask what kind of cancer I had and I would just tell them that it was colorectal cancer. I did that because I thought they were just being nosy and they didn't need to know what kind of cancer I had to be supportive. I know some people wouldn't agree with that, but that was the way I felt. Getting sick is just part of being human. My husband has COPD because he smoked for decades, do I blame him? No, of course not. Life is about grace to ourselves and others.
Well, I don't mean to preach at all, just don't let yourself worry about how you got anal cancer or what other people may think. Try to think positive.
Best of luck to you.
Diane

kirby77
Posts: 48
Joined: Jul 2012

I hear you all, I realize that many of you do not have the same risk history as I do. My history does ramp up the self blame issue. It's not an easy disease to discuss, and yes I could avoid it all together. I have not even shared it with my closest gay male friends, and I am sure many of them know someone who had it.

I feel safe discussing it here, but not that comfortable outside the anonymous world of this site. Just saying it here, is good practice for being able to discuss it elsewhere.

Diane, thank you for acknowleging your experience with shame. I know negative thinking will not aid in my recovery, I just need to say it out loud that I am feeling this way.

I understand disease is not a punishment. I definitely need to revisit the concept of grace.

Thank you all for responding with permission to discuss any topic, I have read every single posting and learned something. I definitely do not feel isolated with disease.

sandysp's picture
sandysp
Posts: 846
Joined: May 2011

I was very touched by your honest post about shame and guilt. My mother said "doesn't that mean you've been having anal sex?" It sent me into a big nose dive psychologically. I really can't explain how shame can overwhelm but it does. Whether or not I did or didn't, in my mind shouldn't have been the first thing on my mother's mind. But we don't have fantasy mothers or friends or acquaintances we have real ones and some of them are stupid, ignorant and judgmental, though otherwise nice people. I even felt this sort of "leprosy" type feeling where I was hospitalized for low blood counts, whether real or imagined, I felt ignored experienced "shunning". At MSK, however, I never felt one even small hint of judgmental behavior. They were fabulous there. If you can surround yourself with these types of professionals, it will make your journey much easier. My heart and prayers are with you. I am 1 year from last tx August 15th and am thinking about these things alot right now since this is the time to go through some of the same tests that got me diagnosed in the first place. I will be thinking of you.
All the best,
Sandy

kirby77
Posts: 48
Joined: Jul 2012

Thank you Sandy, it's pretty universal, no matter our gender or orientation. If it has to do with our genitalia then somehow even talking about brings about embarrassment and the suggestion that we somehow caused it.
I know everyone has one, an anus, but not something you can talk about even when it comes to "how did you discover it?" if the answer is well, I performed my own DRE, then people are like? you did what?
I hear what you are saying when it comes to any isolation(protective) when you were hospitalized. Suddenly everyone is gloved, gowned and protected but your the one being protected. It just doesn't feel that way, instead, you could feel as if you have as you say leprosy.
I'll be thinking of you too, as you reach your 1 year mark, it must be scary to think about all of that you've been through and how hard it was. I am only at the beginning and I can't imagine one year from now. Instead at the moment, I stuck in the what ifs and how can I? and why should I phase?
I am finding a lot of support and very much appreciate it.
I thank you all so very much.

RoseC's picture
RoseC
Posts: 505
Joined: Jun 2011

Ha! I love that - it's so true. There are so many things that accompany this type of cancer that seem to be so 'out there' to folks who haven't had it. I felt the shame till my husband said 'it's not your fault you got cancer'. Boy, if I didn't love him before (which I did, I'm just saying) I surely did after he said that. I still feel embarrassed sometimes but I don't feel any of the shame anymore. Like others have said, someone could have none of the risk factors and still get it. And others, who have ALL the risk factors, never get it.

It's an icky place to have cancer, what with all the exams and 'other stuff', but at least it's curable. Someday soon I hope you'll be all healed up and going on with life and be able to leave the shame factor behind.

kirby77
Posts: 48
Joined: Jul 2012

Being able to tell the truth, our narrative about anal cancer and the shame that comes along with it really helps to make the experience universal.

Your husband was so insightful to make this declaration "it's not your fault you got cancer".

Hearing your journey, makes mine a little lighter.

I wish I had been an angel when it comes to the past, but wasn't. Would it have changed things, I don't know? Now, the self flagellation bears down, and I am looking to be forgiven. Stupid huh?

I've got to stop thinking disease is punishment.

RoseC's picture
RoseC
Posts: 505
Joined: Jun 2011

Kirby, because you realize you need forgiveness (we all do, whether or not we're dealing with cancer) you have already been forgiven by the One Who Matters. You just gotta get around to forgiving YOURSELF. It'll come.

Dog Girl
Posts: 100
Joined: Sep 2010

Kirby, we are all different (and that is what makes the world go round), but I would urge you to release any feelings of shame. Can we be honest with ourselves and admit that maybe some of us could have lived a healthier lifestyle? Sure, but then so can diabetics who are overweight, folks with colon cancer that eat a lot of red meat; smoking and lung cancer... In other words, we know some of the risk factors associated with some cancers, but as said before, some people have all of the risk factors and never pull the Big C ticket and others lead a very healthy lifestyle and still get it. The risk factors that I had were being over 50 and female, and while I have never tested positive for HPV, I would not be surprised if I have it as it can lay dormant for years. And as far as cancer being a punishment? No way. If that was the case how do you explain innocent children having cancer? Personally I told most everyone that I had Ass Cancer. I deal with stress by finding the humor in the situation and I also think Anal Cancer is something that needs to be brought out into the light of day, figuratively if not literally. (See there I go again trying to make a funny.) I would go on to tell anyone that anywhere in your body where you have a cell is a potential spot for cancer and then I would relate some of the other odd places I have heard of cancer like of the sinus cavity. Who knew? And I would also tell anyone that all of us have an anus and most of us need to use it on a regular basis whether we talk about it or not. And most of them would say, "You're right." If you get to the point where you feel comfortable discussing this with your friends, just stress to them that they should check in with their doctor if they start noticing any sypmtoms and you can educate them on risk factors and possible symptoms. The good thing about this cancer (and boy, that is a tough sentence to type, but it is true) is that if caught early there is an excellent chance of survival. Sure, we have yukky side effects and we have a "new normal", but we are here at least. And on a final note; I can't believe you did your own DRE! (Because I can't believe anyone is that flexible!! HA!)

kirby77
Posts: 48
Joined: Jul 2012

First of all, I love your handle. My beautiful boy, yellow lab is laying here next to me.
Shedding light on Ass Cancer thru humor, I can imagine doing that. I have to get over the jokes on me first.
I am at the beginning, very different from those at the end. You are my pathfinder, I am only reading a map and wonder what is it going to look like when I get there?

Yesterday, I was able to tell one friend. She was sympathetic and was able to help me put it into perspective. She has another friend with breast cancer who has had it far worse than me. Our cure rate is much higher. I am grateful.

Shoving a couple of fingers up the bumhole is not that hard after having my own head up my a..hole for so long.

Thank you again.

sandysp's picture
sandysp
Posts: 846
Joined: May 2011

The beginning (like where you are now) was the hardest part, really. Accepting reality, facing fear,getting all the tests done, consulting with different doctors, (my first ones gave me terrible advice), etc. Once I got to the point I truly felt I was in competent (beyond competent) hands, it was a matter of turning my care over to them. I expanded greatly in my meditation practice since that is what I did every day getting my radiation treatments and coping with the recovery process and still do. Meditation is a little harder now that I'm not exactly in the fox hole like I was then. I hope once you settle into your new routine your anxiety will drop lower like mine did. My blood pressure is an astonishing 90/60 quite a bit now. My pulse recovery rate is excellent too. I practice "Chi" exercises and did all the way through my treatment. It is great for stress relief and keeps you breathing and moving in a healthy way. I always used to rush around. It fools you into thinking you aren't doing anything but it's a very deep tissue type exercise and even helps you gently move your internal organs which is particularly good when having radiation treatments. I just use DVDs at home - 15 or 20 minutes to 1.5 hours. There are some great ones. Just a thought. All the best.
Sandy

kirby77
Posts: 48
Joined: Jul 2012

I love your honesty from your celebration of sex in your 20's to now. I get a kick out of how free you are to say what on your mind. Chi must also mean freedom to express without censorship.

Right now I am clenching on to everything like a vise, I can not imagine letting go. Narrating my story here in this forum is helpful. I feel companionship of like experience.

I will breath today and try to release some of the fear and shame that my a..hole/anal cancer is fighting to hold on to.

It's the weekend and I have no consults to go to, I should be enjoying it right? I may breath today.

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

What your mother said to you makes me want to cry. But you are absolutely right--in a perfect world our friends and relatives would put their arms around us and embrace us in the most difficult of times. A person who I have thought of as one of my best friends for many, many years has said to me a few times, supposedly joking, that had I not had all that anal sex, I wouldn't have had anal cancer. They have not said that to me in awhile, but if they ever say it again, I am going to take their head off. I lived in Indiana during the Ryan White/AIDS controversy and it was shameful how people treated that child and his mother. As with us, he didn't ask for his disease either. It all boils down to stupidity and ignorance.

sandysp's picture
sandysp
Posts: 846
Joined: May 2011

To think that this person who said such a mindlessly hurtful thing had been one of your best friends! Arrrgghhhhhhh! That makes me want to cry. We can't choose our mothers. I bet your choices of friends are much better now. Mine are. My mother has dementia and so she couldn't help it. Her dementia is much more pronounced now. But the whole time I was sick she never called and when I called her she never asked me how I was. She would ask my sister to ask me, but didn't ask my sister to tell her she inquired. How messed up but that was our family system taken to a whole new level. She could not face it or me having it and her dementia became much worse or vice versa. Denial is a tricky thing. It's not something I want to get better at.

Love,
Sandy

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

Your situation sounds very familiar to mine. At the time of my diagnosis, I did not tell my mother because she has a negative view when it comes to surviving cancer. I just couldn't deal with any negativity. I finally told her after I had had a couple of good scans following treatment and when I was able to sit down face to face with her (we live a few hundred miles apart). That was almost 4 years ago and she has probably only asked me a handful of times how I'm doing. Like your mother, she is now in early-stage dementia and I'm not sure she even remembers that I have had cancer.

rds711
Posts: 113
Joined: Dec 2011

Kirby,

I struggled initially with a bit of shame but then decided that I had nothing to be ashamed of, I had cancer, yes it was in my anus, but it was cancer. It did not define who I was in any way. I hope that those you tell about the cancer you have are compassionate and supportive, but if they're not its their problem not yours, walk away. Do not own or accept any negative crap someone throws your way, you have more important things to concentrate on.

I am 4 months post treatment. I have no difficulty having an erection or orgasm, however I do notice that my ejaculate is different in consistency, color and amount. I am sure after all of the radiation that I am now sterile but assumed that would be the case. The ejaculate is now clear as opposed to a milky consistency and smaller in amount.

I am 52 and my sex drive had dwindled significantly prior to treatment but not any less since treatment stopped. I had started using androgel about 5 months before I was diagnosed which did help with the sex drive but have not used since.

I would imagine that experiences vary from man to man.

You are in my thoughts and prayers. Remember "Weeks for YEARS!"

Randy

StruTanToot
Posts: 108
Joined: Aug 2012

I am in the same boat as you...have anal cancer and HIV too. Like you also, I have dealt with HIV.

I just found out last week about the anal cancer. I don't mind telling most people, but I don't want to tell my family the type of cancer. They all live in the same small town, and religious fundamentalists, and members of the Tea Party. I know they love me, but some things are just better left unsaid.

My mom is in her 80s and is in poor health. She might not quite understand what anal cancer means. My siblings though, who have never accepted me as a gay male, will make sure to inform my mom.

I'd just rather avoid all that mess.

I'm trying to figure out what to tell them about the type of cancer. I've kept it very broad so far, but my sister-in-law is a nurse and is asking a lot of questions.

Lastly, since we have similar situations, may I add you as my first friend on this site?

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network