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Hpv and judgement

Phoebesnow
Posts: 465
Joined: Apr 2011

Ahhh!!! Life can be exhausting sometimes. Today I came acoss a discussion on the colon/rectal board about a bacteria that may cause some cancers.(fulsibactrium). Laurettas posted something about cervical cancer and other hpv cancers especially the unmentionable ones. Wow, really it was a slap in the face. Here I felt safe, protected from the outside worlds judgment about our disease. Anyone cAn catch hpv not only thru sexual contact, it can be absorbed thru your skin and really once someone has cancer why would it matter how they got it.

We all deserve to be treated with respect, not shoved under the rug like a piece of dirt, because the word anal is too dirty to say or write.

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

Hi Phoebe- My cousin is a gynecologist.She told me that there isnt' one young girl who walks into her office who DOESN'T have Hpv.Even if they get the guardesil vaccine.How do we get anal cancer???She said people can walk around forever with hpv and never get cancer..But there are others whose immune system isnt as strong.and get sick.People who judge are ignorant and need to do their homework!...I once went to a gynocologist who said to me Farrah got anal cancer from anal sex.I asked her how she knew that???Did she read it in the Star???I have never had anal sex...I stopped going to that doctor.People say ridiculous things...Try to ignore them...hugs ..alyse

Phoebesnow
Posts: 465
Joined: Apr 2011

Thanks Alyse. I just needed to vent. I hate gossip and people who make hasty and sometimes ignorant judgements. I laughed about the anal sex comments. People do say ridiculous things, even doctors.

melbas's picture
melbas
Posts: 43
Joined: Jul 2010

I, too, was asked if my cancer was from anal sex. Never did it, nrver wanted to try it, but now I live with knowing people think that. Only response I have is...God can help cure cancer...but there's no cure for stupidity. Melode

mp327's picture
mp327
Posts: 3312
Joined: Jan 2010

That's a very good response! You are right, people can be cruel when it comes to discussing this cancer. What I find unbelievable is that people on another cancer discussion board would have such an attitude. My opinion is this: No one, and I mean NO ONE, deserves cancer--no matter what kind, where it's located or what may have caused it. All cancer is bad and no fun and I would think that anyone who has been through it or is going through it would have more empathy.

azgal
Posts: 31
Joined: Oct 2011

Throughout my journey I've heard some real doozies from doctors and laymen both. Upon him hearing the Dx of Anal cancer, my beloved long time family doc grimaced horrifically, mumbled something about anal sex, then slowly said "they're going to burn you up" and "the only body part as sensitive as the anus is the eyeball, and treatment is going to be like them using a blowtorch on your eyeballs". Wow, doc, tell me what you really think. LOL

Your "The Star???" reply is hilarious! :D

mp327's picture
mp327
Posts: 3312
Joined: Jan 2010

That beloved long time family doc would be my former family doc if he had said that to me.

azgal
Posts: 31
Joined: Oct 2011

I guess I failed to mention that he was beloved all that time BEFORE those comments. We'd known each other for almost 25 years at that time. His delivery sure could have been different.

shirlann54
Posts: 161
Joined: Aug 2011

We should be treated with respect.If someone ask what kind of cancer did i have have .I hate to even tell them .Because i see the look on there face .Or they will ask what is anal cancer and were is it. lol The other day i called this lady about joining there cancer support group..She ask me what kind of cancer did i have i told her.She didn' say any thing for a minute and then she said ' OH '..It did make me feel dirty...

Phoebesnow
Posts: 465
Joined: Apr 2011

I am glad I brought it up as it seems we all have a story or stories. It is good to unload.

sephie's picture
sephie
Posts: 561
Joined: Apr 2009

i think we should scream it out until people are used to the word anal. i also first start with the farrah fawcett kind then i go on into where it is. i do get asked questions and i answer so as to help people not wait so long for a 2nd opinion like i did. doctors are stupid also. to miss what i had was ridiculous because it looked like an ulcer on the outside of my anus, not even on the inside. i felt stupid for waiting so long but just kept hearing that it was not cancer . but the dre's and anoscopes that the stupid dr. would do sent me thru the roof with pain and i can take pain. we need to write to that person on the colorectal bd. are people afraid to say vulva cancer because it can be caused by HPV also. oh well. sephie

azgal
Posts: 31
Joined: Oct 2011

HPV is present in around 50% of Breast and Lung cancers, and 70% of Head and Neck cancers, yet those cancers usually have no stigma attached to them.

Most people are not even aware that a majority of those cancers (among others) are linked to HPV, and that just about everybody that's had contact with another human has been exposed to HPV.

The sad, hyprocrital, thing is for those that stigmatize HPV-related Anal cancer, is that they are just as likely as anyone to be diagnosed with Anal cancer, or with Lung cancer, or Breast cancer.....especially those that have already been diagnosed with a cancer, since that shows their body was prone to abnormal cell changes.

I guess 1 out of 3 people being diagnosed with cancer in their lifetime isn't enough to open everybody's eyes that cancer is a "tip-to-tail" equal opportunist. The more that's revealed about cancer, the more I've come to realize that cancer has only "one color"...

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

I agree, I get those looks too. I've been very open and honest about having had cancer and what type it is. Even at work. But I also know that people are going to the internet and looking up the causes and thinking what they think. I don't like the idea, but it is what it is. I too did not get this from anal sex of that I am 100% certain and I've never tested positive for HPV in all the years I've gone for my GYN exams. But, as we know it can sit dormant and then zappo. I try not to dwell on it, but I would be lying if I said that it didn't bother me.
glad to have people to talk to about it...thank you all for being there.
Liz

Phoebesnow
Posts: 465
Joined: Apr 2011

I am not so brave. I told my family out of concern for them. I tell others colon or rectal. I am not proud of this.

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

I applaud all those who are able to be forthright about telling people they have anal cancer. I also sympathize with those who aren't. Me, I'm in the middle somewhere - I don't really talk about the cancer with just anyone. And if someone does happen to ask me what kind, I usually wave my hand around my abdomen and that's it, they don't ask any more questions. If I feel that someone is really interested, I'd be more than willing to give all the details. My close friends, family, and close work acquaintances know I had anal cancer and the how and why of it, and have been very good about it. Fact is, the anal area is not something people want to talk about. I'm okay with that. I don't feel guilty about my reactions. Maybe someday I'll be a spokesperson for anal cancer, but I'm not that outgoing anyway and for now helping others get through it (like on this forum) is enough for me.

I didn't really think Lauretta's post was meant to be mean, but I understand the need to vent.

Angela_K
Posts: 374
Joined: Jan 2011

True confession: I say the word "anal" sometimes just to make some people squirm. :) Honestly, telling people that I have had anal cancer has never, ever bothered me. If they have 'ideas' about this disease, it's their ignorance, not mine. I strongly feel that God did not make me go through all of this only for me to keep quiet. If I can help with an early diagnosis or encourage open dialogue about HPV, I'm going to do it. And maybe I feel that my silence would make me the victim . . .allowing 'it' to win regardless.

I've said it once, I've said it one hundred times . . .

Asses: Just another body part.

Love to all,
Angela

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I love your attitudes. I don't mince words when telling people what cancer I have. If they are uncomfortable, it's their problem not mine. Just another body part in my opinion. I am sure that there have been people that have googled it and sat there looking at their computers with wide eyes and judgemental thoughts running through their heads. Again, their problem not mine. It is what it is and I know the more attention that can be brought to it the better. I agree that something good needs to come from this. My best friend is running in the NYC Marathon this Saturday. Her goal is to raise $26,000.00 to donate to the HPV and Anal Cancer Foundation. Today she surpassed $7,000.00 We have posted it all over Facebook, sent out emails, she was interviewed and an article was published in her local north Florida paper and we aren't done yet! I would be lying if I did not say that for a moment I felt very vunerable, but it was the right thing to do. She is doing this for all of us that have been down this road and all the ones that will follow us. Hopefully as awareness and research are increased those numbers will be fewer and fewer. The finish line at the end of 26.2 miles is not her only goal. The end of this cancer is.
Blessings,
Joanne

shirlann54
Posts: 161
Joined: Aug 2011

I went to a cancer support group today.Ever one told there cancer story's .All but one was breast cancer .I was thinking about leaving .There storys were pretty long and thats ok .When it got to me .I told them i had anal cancer..I talk'ed for a few min about my cancer when i stared my treatments when i got done and that i had 3 biopsy .And the head lady cut me off .And went on and told her story.And i didnt even tell the bad things about this cancer lol. And i would'nt .I guess i should have said i never DID ANAL SEX.LOL .I did think about saying it but i couldnt do it.I may not go back.

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I am so sorry that you had to experience that. On one of the other support forums, one of the members wants to get a bus/rv and go around the country educating the public about anal cancer. I think she may be onto something!
Blessings,
Joanne

mp327's picture
mp327
Posts: 3312
Joined: Jan 2010

I'm sorry that happened to you at the support group meeting. What a shame that people can not embrace someone who has had cancer, no matter what type, when they have walked the walk themselves. I once attended a seminar for cancer patients/survivors. It was a small group and we were all asked to tell a little bit about ourselves and our cancer experience. I was very nervous, as it was the first time I had actually been asked to speak to total strangers about my cancer. However, when my turn came, I minced no words and told them I had anal cancer. No one fainted or gasped. Instead they listened attentively. I did not feel embarrassed or shamed. I'm sorry your experience was not more like mine.

Angela_K
Posts: 374
Joined: Jan 2011

Shirlann ~ I'm so sorry. I've heard many times that cancer support groups are mostly boob friendly and that's because of the statistics . . .and because of the exceptional marketing of breast cancer awareness -- it's easier to talk about openly.

A support group should offer just that, SUPPORT. This 'head lady' needs some more guidance regarding her role.

Whether you go back or not is totally up to you and it's understandable if you chose not to. But it could also be a teachable moment. . .an opportunity to talk about the stigma, an opportunity to talk about HPV, an opporunity to talk about the symptoms and brutal treatment side effects. An opportunity to empower yourself.

(And as a side note: I don't care who or what ANYone has sex with, in any oriface of the body. No one 'deserves' cancer.}

Just a few moments ago I mentioned to my husband your post and breast cancer survivors dominating some support groups. And he said, "Lucky for you, I've always been an ass man." :}

Happy dia de los muertos!!

mp327's picture
mp327
Posts: 3312
Joined: Jan 2010

Your hubs comment to you has me laughing hysterically! He sounds like quite a guy who loves you dearly.

I think it's very unfortunate that this country has become so obsessed with boobs and breast cancer, as it puts other types of cancer out of the minds of so many people. I have had many occasions when I've told someone I had cancer and they automatically assume it was breast cancer, judging from the stares at my chest and the questions they ask. The surprised look on their face when I reveal that it was actually ass cancer is too funny sometimes! I have to laugh and am tempted to ask them which they'd rather have if they had to give up a body part--their boob(s) or their ass! To me, that's a no-brainer.

shirlann54
Posts: 161
Joined: Aug 2011

Your husband is funny i love that .My husband would say the same.He is a ass man too.Loves my butt lol .I have to stand up for myself this is not like me .Some poeple want you too feel bad about yourself because you have anal cancer.I shouldn't have even thought of telling them i never had anal sex .I was thinking of what someone had said to a lady that i know.She ask her what kind of cancer she had.She told her anal cancer .THATS WHAT YOU GET FOR HAVING SEX IN THE ASS She didnt even know this person .And it was said to her another time after that.I have never been to a support groups before.I didn't think i could do it but i did .I;m going to go back and try it again.Thank you , shirley

Phoebesnow
Posts: 465
Joined: Apr 2011

I would love to go to schools and educate young people about hpv and the long term ramifications to themselves and others that they may infect. Yes, I would have no problem with that, and if some people in my social circle found out due to that that would be fine by me.

I live in Los Angeles, the land of judgement. This is definitely not utopia... Sometimes I sit and smile at the people who have stabbed me in the back over and over again. That's what we do here. I am certainly not going to help somebody load the gun, if I don't have to.

When I tell people that I have had cancer, it is usually due to the fact that they havent been seeing me. I don't feel that every Tom, dick and Harry needs to know, it's location. I wonder why people even ask, don't you? I never ask personal questions, I usually let people tell me. I grew up in a small town in NJ worked in NEw York City and then moved to LA. I have traveled extensively in Europe and Mexico and the USA, I have a pretty good basis to make this judgement about La. If you go north or south the people are sweet as pie. A poll recently taken puts LA as the rudest city to visit in the country. I love it here, for the weather, the surfing and it's close proximity to many things I enjoy. I have to admit I have a very sensitive nature and can cry over a Hallmark commercial.

I am certainly on board with the bus lady. Maybe we could all organize a format that we could use to bring awareness to the schools thru the Anal Foundation?

shirlann54
Posts: 161
Joined: Aug 2011

That would be a good thing to do go to these schools and educate the teens about hpv .I lived in Santa Ana in 72' for about a year.I loved the weather there too but didnt care for the people.If someone ask were your cancer is do you tell them?If i'm out and run in to someone i dont tell them i had cancer.

Phoebesnow
Posts: 465
Joined: Apr 2011

No generally I will not tell. Thanks for your support Shirley. I always feel warmth coming from you. I tell some people about the cancer, but not what kind, if they keep pestering I say colon or rectal.

Ann_i_
Posts: 47
Joined: Oct 2011

Shoot, I tell. I'm not embarrassed over the type of cancer I have. I have no reason to be embarrassed. (Even if I had gotten it from anal sex, which I didn't, even if I had HPV, which to my knowledge I don't, my one factor that I know, I smoke.)

I didn't choose my cancer, I didn't pick its location. I do have it though and I will not allow others to dictate how I feel about myself or what I have.

I have Psoriasis as well, have had it since the age of 3. Judgmental peers made my childhood a living hell. Will they make my adult life one as well. HELL NO!

I didn't come into my own until after High School, my ego was built over jeers and tears, and at the age of 45, I refuse to willingly go back into that box. You want to make me embarrassed over what I have, you're going to need a bigger arsenal than associating my cancer to/with sex. (Yeah, I dipped into embarrassed, but I'm done. I didn't ask for it, I didn't earn it, but I do have it. And the more I hear about how others are fairing with it and the stigma attached, the more determined I am to stand up, bend over, and point them-those with a problem with it- in the right direction.)

Maybe we could adopt a personal slogan, something to think about when others give us that look, or we see them flinch and want to dismiss us.

(Speaking in public, the advice is always, imagine your audience nude. Well, running into that look, feeling depressed over someone elses opinion of you? ..Then think about asking them...

"Have you ever kissed a boo boo to make it better? Yes? Good, then you have practice cause you can kiss my ass.")

I am who I am, I even tell people the causes of anal cancer (that the medical community associates with it) let them make their determinations on how I got it. But I want to look them in the eye while they are digesting it and coming to their decisions, and I don't want them dismissing it. They need to think about it and discuss it as much as I do. And the more people thinking about it, the less it will be a taboo topic.

Anal: I considered myself anal for most of my life. (It isn't a new word in my personal dictionary, it just got applied to another aspect of my life.)

My chemo doc talked down to me when she first met me (I'm not sure if it was the type of cancer I had or if she didn't know my brain span) either way, she's my biggest supporter now. (She's my go to doc, and she takes that position seriously and actually seems honored that I chose her for that role.)

I'm coming back into my own, and I'm not going to let others opinions (even medical ones) get to me or make me feel anything about myself that I don't choose to feel about myself. (I didn't let them win when I was kid, and I'm too old to give them a second chance at stealing something from myself that can't be taken unless I willingly give it up.)

Lorikat's picture
Lorikat
Posts: 584
Joined: Jul 2011

You go! I feel the same way. The doc who did my colonoscopy told me this was mostly a gay man's cancer with a chuckle. I am a 60 plus mother/ grandmother, so that negates that, and anyway, who says one group of people over another should get this cancer? Will see him one more time to tell him he's a jackass and then never again.......

BTW, a lot of doc's talk simpler to patients til they get a read on them.....you must have "read" well, LOL. Lorie cheering you on

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

I hope you hang on to that wonderful man of yours for his humor alone!! You both make me laugh alot!

Dee2005
Posts: 24
Joined: Oct 2011

All your comments are great!!! When people find out I'm a cancer survivor their eyes go directly to my breasts like they are trying to figure out if they are real or not. I've gotten used to it and just let them guess. I was told by a coworker one time to quit letting my fiancee go to the rodeo. I didn't get it at first, but later realized what she meant. Oh boy was I pissed off! I wasn't HPV positive and was the subject of an anal cancer study. I was prior Farrah and there wasn't much info out there. The doctors told me that I probably got it from a sunburn. ????? I don't know why I got it, it doesn't really matter. I survived it! I could care less about what others think! I'm enjoying my second chance at life!!!! Leave it up to me to get a REAL PAIN IN THE ASS!!!LOL

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