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Shame...anyone else feel this way?

7243
Posts: 223
Joined: Feb 2011

Dear Friends ... I never knew I had HPV until I was diagnosed with cancer. I feel shameful and am having a hard time dealing with my shame and sense of "causing" this in someway. My husband (second husband) loves me unconditionally, however I'm having a hard time with accepting myself right now. Can you share your feelings and your experience? I find I don't even want to tell people I have "anal" cancer...I say "rectal or colon cancer". Help me get my mind around this and get to a place of more acceptance. All advice and input welcome. Thanks so much ...

RoseC's picture
RoseC
Posts: 533
Joined: Jun 2011

Is it the 'anal' part of the cancer diagnosis that's making you feel ashamed? Probably. I felt the same way at first. Would you be ashamed if you had breast cancer instead of anal cancer? Probably not. It's that word 'anal' that makes us cringe and shudder and feel like we did something bad. You didn't do anything wrong. The only thing you did was have sex. And there's nothing wrong with that. Don't feel ashamed. Hold your head high and accept yourself unconditionally. You've got nothing to be ashamed of. You also are not obligated to tell anyone you've got anal cancer. Some people are comfortable saying it, others are not. It's entirely up to you.

I posted this in another thread - maybe it will help - just writing it helped me:

"Don't anyone feel guilty because you have anal cancer. One of the first things my husband told me after I was diagnosed was 'It's not your fault you got cancer.' Thank you husband - I needed that so bad. I HAD been feeling guilty. I did something. I smoked too much, I drank too much, I had too many partners - it was my fault I had cancer.

No, he said, it is not your fault you got cancer.

My brain still thinks maybe it is. I drank and smoked my way through my 20s and 30s. I had several relationships. Maybe it WAS my fault.

But many folks who didn't drink, didn't smoke, and had fewer partners than me have this HPV virus and will never get anal cancer. And many folks who did MORE than me have this HPV virus and will never get anal cancer. My oncologist told me that half the population of the United States has HPV; it's only in a very small percentage of people that it turns to cancer. It's the 'why' of this that's unknown. Why do some people get it and others don't? The doctors don't know and neither do we.

I do know this - God is not punishing us with anal cancer because we sinned. We all sin at one time or another. If we didn't we wouldn't be human. God would never use cancer as a punishment. If anything, it is a chance to renew your faith and talk to God more openly.

Whatever your religion, or if you have none, remember, 'It is not your fault you got cancer.'"

7243
Posts: 223
Joined: Feb 2011

Thank you for your support. This means so much to me.

mp327's picture
mp327
Posts: 3324
Joined: Jan 2010

Considering the fact that nearly 70+ percent of the population will have HPV by the time they reach the age of 50, it's really easy to see that it is not your fault. We are humans, with urges and desires--having sex is a normal part of life. My husband has never been anything but supportive to me and I am so thankful for that. I hope you will not blame yourself for this. HPV takes years to wreck havoc--no one could have predicted the end results.

Angela_K
Posts: 374
Joined: Jan 2011

http://www.denverpost.com/movies/ci_6847553

sephie's picture
sephie
Posts: 562
Joined: Apr 2009

i cringed at first when i heard the word anal. but then farrah fawcett came on TV the very next day after i was diagnosed so i started telling people that i had farrah's cancer. now i just say anal cancer. i try to answer anyone's questions and tell them to get their children vacinated. everyone used to whisper the words breast cancer , too. a long time ago but i remember that. our bodies could not fight off the cancer cells. everyone has cancer cells. do not feel shame. unfortunately, more and more anal cancers are being diagnosed. i do not blame myself at all. life is full of hazards. but we have each other on this site and can help each other. my hubby has never blamed me for this. he has , in fact, asked me if i thought he had given me this HPV. i did not even think that . hugs to you sephie

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sephie
Posts: 562
Joined: Apr 2009

just to let you know. i have never been diagnosed with HPV --not during any of my pap smears for 40 years or at MDA before and after tx. but i am learning that i could have it anyway and not have it diagnosed at any of those pap smears. i never smoked but have had more than 1 sexual encounter but still never got the HPV diagnosis with my annual pap smears. so we can get this cancer and not have a specific HPV diagnosis. sephie.

RoseC's picture
RoseC
Posts: 533
Joined: Jun 2011

I always had clear pap smears too - never once did I have anything irregular show up. I started having paps at around age 18 and am now 57. I never did have an anal smear though. It was never suggested, nor did I even know one was available (though I probably wouldn't have wanted it anyway :) ). My gyn once mentioned that the HPV virus most often settles in a woman's cervix but that sometimes, for unknown reasons, it settles in the anal canal. I never read that anywhere else, but that's what she said.

Lorikat's picture
Lorikat
Posts: 587
Joined: Jul 2011

I posted a day or so ago about squamash cell carcinoma of the rectum. Is this what you have? HPV seems to be the main cause and like you I say colon.....I did not even know about HPV until now...still waiting to find out how this is to be handled. I would appreciate if anyone would share...

sandysp's picture
sandysp
Posts: 859
Joined: May 2011

I totally get this thing about shame. So the first thing I did is announce it to practically everyone I knew. "I have been diagnosed with anal cancer" - then I made a joke - "Farrah Fawcett Designer cancer." While everyone was probably still reeling I was having a chuckle at my own humor.

I call her Saint Farrah for one reason, because, though Anal cancer is rare it helped to not have to keep repeating to people the kind of cancer I have. Apparently the world was watching Farrah.

The worst thing that has ever happened to me has not been this cancer. The death of my only child topped that list twenty years ago. She was 20. Her death was likely foul play and I couldn't do a damn thing about it. They never found a cause of death and without that you have nothing.

But when I read the psalms and other biblical material it goes so far back that we are ashamed about things that happen to us and/or our families I realize that it's the human condition.

We can change this by saying our diagnoses out loud. It will help others too.

I am so glad Saint Farrah said it out loud. That's why we all have each other. But if you can't do this. I understand. Some of the reason I can do this is because I'm 61 years old and have had quite a life. But you are precious and it's my belief that God loves you and wants you to love yourself and be proud of your body. This is just one little thing in it gone wrong and you are working to make it right by coming on line here with us and following your doctors instructions. We'll come through this together. I'm praying for you right now.

RoseC's picture
RoseC
Posts: 533
Joined: Jun 2011

I'm so very, very sorry about your daughter, Sandy

Lorikat's picture
Lorikat
Posts: 587
Joined: Jul 2011

Wow....so sorry about your daughter. Puts the world in perspective. God bless.

mp327's picture
mp327
Posts: 3324
Joined: Jan 2010

That really is something which puts this all in perspective. I'm so sorry for your loss.

sephie's picture
sephie
Posts: 562
Joined: Apr 2009

oh, sandy, i am truly sorry about your daughter. nothing can be worse than your loss. sephie

patacz
Posts: 64
Joined: Sep 2010

These treatments are tough, but nothing can compare to the pain of loosing someone, especially a child. I have a 20 year old and just thinking about the possibility of something happening to her frightens me. I am so sorry you had to bear such pain, God bless you! I pray for strength for all who are battling this disease, with His help, it that can be thrashed.

lizdeli's picture
lizdeli
Posts: 531
Joined: Jul 2009

I do find myself "whispering" what type of cancer I had. When people find out I'm a cancer survivor, the first thing they do is look at my chest, assuming it was breast cancer. I can tell that's what they are thinking because of where they are looking. So I tell them, it was not breast cancer and then I find myself getting timid about talking about what type it was. Of course I reference Farrah and then they looked dismayed and I get the pity look as if I'm going to die. So then I have to explain that Farrah's case was not the norm, etc, etc. But because there is so little known about anal cancer, I'm sure people go the internet and look it up. So of course they think I slept around a lot, (didn't) had certain type of intercourse (didn't) or smoked my way to this cancer (possibly). So I will admit I tend to try to explain too much. I do say colo/rectal cancer sometimes then I get stories about friends and relatives who had colon cancer, etc. and did I have that type of treatment, etc, etc. Now that I think about it, I spend way too much time defending myself.

I'm still baffled about this type of cancer. If smoking causes it, it would be much more wide spread. Same thing for the other stated causes. Just doesn't make sense. I also never tested positive for HPV, but like Martha said, 70% of the population carries it. If I have it, it was predominately dormant but one day stuck it's ugly head out and wham.

Liz

lizdeli's picture
lizdeli
Posts: 531
Joined: Jul 2009

I am very sorry that you endured such a terrible loss. My heart goes out to you.
Liz

sandysp's picture
sandysp
Posts: 859
Joined: May 2011

I never knew you how much you people were going to mean to me when I signed on. But you all mean a great deal to me. I am so glad we have this post about shame. It is something we need to address. All the best

RoseC's picture
RoseC
Posts: 533
Joined: Jun 2011

Sometimes the guilt goes further - the thought that some people never make it through their twenties or thirties. Why them? Why am I still here, after all I've done, and others are gone. Not gone - I hope and pray (know) they're in a good place. But why are we still here, able to talk to each other and live our lives. I'll never know the answer. The guilt is there though.

I've been reading a lot of the bible lately and it has helped me to understand things a lot. We're not meant to know everything now. Later we will. I was talking to a priest a while ago and asked him about those who leave this earth early. Those who maybe haven't made peace with the Lord yet. Maybe they would have later on in their lives, but their lives were cut short. He told me not to worry, that God would work it out with them. That made so much sense.

I don''t mean to turn this into a religious thing, it's just that I feel so very blessed, and I'm very glad to be here today to be able to say so.

Dog Girl
Posts: 100
Joined: Sep 2010

OK, I may have hit the wrong button, so I will start again. I will be telling my age, but I remember when Betty Ford first started talking about Breast Cancer. Evidently the word "breast" was titilating (pun intended :) ), but look how far we have come now. There are bumper stickers saying "Save the Ta Tas!" I made a conscious decision to tell that I had anal cancer. I was diagnosed and went through treatment in 2009 while Farrah's show aired and while it wasn't easy that she died while I was going through treatment, I did so appreciate Farrah's courage and decided I would try to be courageous as well. I would simply tell people that I had anal cancer, like Farrah Fawcett. (I would even joke around with my good friends that I had ASS CANCER, but that was just my personal twisted way to deal with things. When stressed I look for something funny...) If I got a weird look, I would say that everyone has an butthole, don't you and that we can get cancer anywhere in our body although we don't get to choose where we have cancer. I only received one crude remark about sexual practices and it is amazing what a whithering look will do to shut someone up.

As far as HPV goes, you could have gotten it from your husband (or a previous partner) as it can go symptomless in both men and women for years. HPV 16 and 18 were first linked to cervical cancer, and now anal cancer, and now there is a higher incidence of throat cancer tied to HPV 16&18, more than likely linked to oral sex. I've never married, and since I am not a num, I am not a virgin, but I do not feel shame that I was a sexual being. In fact I am using my having anal cancer as a discussion jump off with my friends whom have children. I have a friend who has a 16 year old boy and a 13 year old girl who does not want to get them the Gardisell (sp?) shots. I told her that while she is trying her best to raise her children "right", her mother tried the same thing with her and I knew what she did in college! :) I ask them if they would want their children to suffer the way I have suffered, and of course they say no. I'm sure people were hesitant about the polio sugar cubes/shots in the 1960s as well, but it appears that since HPV is/will be so prevalent, it is better to be safe than sorry I say. Try to use your experience to educate others and I've noticed that when you speak matter of factly, people take info mater of factly as well.

Bottom line; there should be no shame in having cancer in your pooper. God gave all of us one for a very good reason and we just happened to pull that ticket. And in hindsight (again pun intended), while it was tough as hell going through it, the process is fairly short and there are many good outcomes. Good luck in your treatment and recovery.

sandysp's picture
sandysp
Posts: 859
Joined: May 2011

Ha, ha, ha. That's the best way of saying it yet. When I think about it that "pooper" is a magnificent piece of God made machinery and I appreciate it for the first time. How dumb is that? I am glad to be doing Tai Chi exercises and meditations now. Hopefully I will pull out of this and be more grateful for this human experience.

alis7910
Posts: 80
Joined: Jun 2010

Hi:
my oncologist told me I "most likely had HPV". I have never had it diagnosed, so I don't even know...I'm an RN and still had a problem at first telling people that I had anal cancer. Then, after a while I didn't care, but I realized that if I said I had cancer then people would ask: what kind?.
Love to you

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

I had HPV anal cancer also. I was shocked cause all the years of PaP smears and things always came back with a clean bill of health. I took it with a sense of humor though. I was officially the family pain in the *rse...etc. It helped my family through it which also helped me through. There are times when I do get embarrassed telling people, but I think about how by telling one person it may save the life of another and that makes me smile. I definitely don't take advantage of that pooper anymore. To think it has been with me all my life and I never paid attention to it until it was sick and causing me so much pain. All the work it did for me, silently for years, never once complaining. (okay...see...we just can't talk about our arses without a sense of humor).

Angela_K
Posts: 374
Joined: Jan 2011

http://assdiaries.blogspot.com/2010/11/november-2009.html

tracy p.
Posts: 6
Joined: Aug 2011

Yes, I know how you feel. While it has not been confirmed that my anal cancer is HPV related, of course we all know the chances are pretty good. I was never symptomatic and my husband has not been either. We have been together for 30 years for heaven's sake. If this is due to HPV, then yeah, I contracted it premaritally and I say-so what? I am 54, so hey, it was the 70's. Besides that, this horrible cancer is not a punishment or a judgement on you, me or anyone else who has it. It can also cause cervical cancer, and there's no shame in that, either. We must hold our heads up and say "Yes I have anal cancer, and I am going to beat it!" Please don't let shame bring you down. Hang in there, Love, Tracy

Grateful2008
Posts: 1
Joined: Aug 2011

Yes and no. I was told nearly 80% of adults can be tested positive with some form of HPV. That helped a tad. I think the whole thing about it being in the anal area made me feel like people were going to judge me somehow. Then I put my big girl pants on and said "live girl, live!!" and somehow it didn't matter anymore. Let those that judge me judge. I do know that I received an outpouring of love when so many around me found out. They would ask what kind of cancer. I would reply, butt cancer and a good dose of it at that! They were always taken back but then got the humor drift. Lord knows we cancer patients needs some humor! It told them that there was no reason to be alarmed and yes, people get butt cancer. I am one.
I have been recovered for three years now. I have quirky side symptoms and most likely will until I take my last breath but breathe I will continue to be ever grateful for the people in my life and all the simple things I have. Blessings to you and may your future be bright and witty very soon again.

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