CSN Login
Members Online: 8

telling people you had anal cancer

pem
Posts: 61
Joined: Mar 2013

does anyone have any advice on how to change my thought process on being so embaressed for having this type of cancer.  i dont even go out with the fear of someone asking me what type i had.  i feel so alone, sad and borter line falling into a depression.  i only feel comfortable around my kids and husband.  i havent seen freinds or anyone outside my house since my treatment started jan 29/13. should i go see a specialist to help me?  im scared i wont be able to dig my way out of this hole im falling deeper and deeper into.               pem

LisaMMiles
Posts: 38
Joined: Mar 2013

I feel your pain as I have a hard time telling people too. I usually just say its colan cancer because mine bordered the colan. I think it sounds a little better. I started treatment on Feb 4 and I just finished on Friday, and I am in more pain now than during treatment. I hope this calms down and gets better soon. I cant go out of the house I am in so much pain! Are you done with treatment? And how are you feeling?

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I know you are going through a rough patch right now, but you will soon be turning the corner on this and feeling much better.  You just finished up your treatment less than a week ago and it may take a couple of weeks before you see any improvement.  When you do, celebrate it, even if it's just a small improvement!  I found myself celebrating when I finally was only having 10 BM's a day instead of 15!  I wish you a speedy recovery!

LisaMMiles
Posts: 38
Joined: Mar 2013

Thank you for you words of advice as I need all I can get. I am just hurting so much more now than when I was in treatment! I was told that it would get worse before better. I know I will get through this :) Just wish I could fast forward a week or so haha

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

Getting this diagnosis can be a huge emotional slap in the face, due not only to the location that no one seems to want to talk about, but also the stigma associated with it because it is most often an HPV-mediated disease.  I discussed this with my colorectal doctor one time and her words to me were:  "Don't let it bother you because everyone has one (meaning anus)."  That did help me, along with knowing that I did not have the risk factors most often associated with this disease.  If anyone looks at me strangely when I tell them what kind of cancer I had, I remind them that this disease can happen to anyone.  It is estimated that about 80% of the adult population in this country will have one or more strains of HPV by the time they reach the age of 50. 

Now, I don't go around just announcing to everyone I meet that I have had anal cancer.  But in the course of conversation, if it happens to come up, I do not hesitate to speak the truth.  I figure it's just one more way of increasing awareness, even if it's one person at a time.  That said, you must handle this in your own way and if it makes you uncomfortable to talk about it, then don't.  If people ask, just tell them you had a cancer of the lower intestinal tract and you don't care to say anymore about it.  Then change the subject.

Marynb
Posts: 1134
Joined: Aug 2012

At first, I told people that I had a rare gastrointestinal cancer, which it is. That is the truth and seems to suffice for most people. I know the shame. As far as risk factors go, I wonder how long hpv can live in the body before cancer diagnosis?

jcruz
Posts: 216
Joined: Jan 2013

I thought the virus lives forever in the body.  I know that I had genital warts when I was 20 years old and I am now 59.  I feel like the poster child for things that you did when you were young that come around to bite you in the you-know-where when you're old.  I got both genital warts and herpes in my 20s, both of them a curse of the 1970s (and I wasn't even fooling around that much!)

As for talking about it, at first I was embarassed but now if someone asks me I tell them exactly what kind of cancer I had and if it's someone I feel more comfortable talking with I give them a pitch for asking their doctors about anal cancer screening and for getting their children the HPV vaccine.

jennifer101
Posts: 26
Joined: Oct 2012

I have breast cancer and was checking out other discussion boards as I feel there is a lot all cancer survivers have in common.  At first I only told close friends and work colleagues that needed to know.  I was out for six weeks and when I came back I had a lot of people asking about my health.  I found myself realizing that I did not need to tell everyone what kind of cancer I had or even that I was out for cancer related issues.  I often say " I had surgery for cancer and now I am better, thank you"

The point is, there really is no need to have to explain what kind of cancer you have/had.  I have also found that people do not pry after you tell them you were treated for cancer.  It is none of their business.

7243
Posts: 213
Joined: Feb 2011

Pem ..my heart aches for you right now.  It sounds like you're dealing with a lot if shame, fear and loneliness.  I'm here to say from the bottom of my heart you are good, worthy, and the virus that caused this cancer does not define you.   However,  this is a difficult process...and to answer your question, "should you seek out help", I say yes...do it for yourself!   Find an "onco-psychologist" or someone who deals in grief.   This whole cancer thing for me was a huge loss ... I struggled so very much with exactly the questions you are asking and I had such overwhelming shame over the HPV causation.....and I isolated myself, leaning too much on my husband.   This is my opinion...get your oncologist to suggest a sensitive counselor, perhaps consider a cancer support group, and if you can muster the courage, find a close friend or family member who you feel safe to tell your story to And lay it out there.  You DO NOT have to tell everyone or anyone your private health matters.   But I encourage you to be gentle with yourself...you are very likely vulnerable right now....perhaps emotionally tired due to diagnosis and physically exhausted due to treatment.  You deserve peace in your heart and head.  And you are absolutely worthy of that dear one!

May I suggest guided imagery ... You can download these guided meditations/imagery and escape into the calming visions.  There is a woman named bellruth naperstek who has great cancer imagery ... Go to healthjourney.com or google her name and check it out ... This saved my life!  I was so emotionally strung out ... The imagery calmed me down.  I could go on and on .... I'll say this, I didn't think I was going to survive the worry,  shame and anxiety I felt ... At the same point you seem to be ... Right after treatment.   I was lost, but slowly found my way with the help of a counselor, guided imagery, meditation, and my husband.  

You are suffering ... It is real.   Now try to feed yourself well, drink clean water, and try to quiet your mind ... Love yourself as best you can.   I'm sending so much love and support your way!!!!

 

If you want to talk, go to the CSN e mail and add me as a friend.  We can email or even talk on the phone if u feel u want or need a totally non-judgmental person to chat with who has been there.  I'm two years out now...time will pass, but in the interim, try to  give yourself a break emotionally .

I just want u to know u are not alone.  Hang in there.

 

 

LisaMMiles
Posts: 38
Joined: Mar 2013

So hmmmm dont know anything about HPV. And never was diagnosed with it. My Dr said the main reason for anal caner is smoking. And hmmm never smoked either. But my cancer was in the skin. And mine was such a rare caner that only 1% get. 

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

HPV is thought to contribute to the majority of anal cancers.  As for never being diagnosed with HPV, I never was either.  However, one can acquire the virus and carry it for years without knowing it.  There may be no symptoms or signs of the virus, so it goes undetected.  Even getting HPV tests at the time of a pap smear may not show it if the virus is not in the active stage.  I would encourage you to check out these websites for more information:  www.analcancerfoundation.org and www.NCCN.org

As for smoking causing anal cancer, I don't think this is the primary cause.  I, along with many others with this disease, have never smoked.  However, smoking weakens the immune system, which can allow cancer cells to grow, so it can be a risk factor.

Following is a list of the risk factors that were given to me in information from the National Cancer Institute that my oncologist provided at the time of my very first pre-treatment appointment:

1)  Being over 50 years old

2)  Being infected with human papilloma virus (HPV)

3)  Having many sexual partners

4)  Having receptive anal intercourse (anal sex)

5)  Frequent anal redness, swelling, and soreness

6)  Having anal fistulas (abnormal openings)

7)  Smoking cigarettes

 

This following is an excerpt from the National Comprehensive Cancer Network's treatment guidelines for anal cancer:

"Risk Factors--

Anal carcinoma has been associated with human papilloma virus (HPV) infection (anal-genital warts); a history of receptive anal intercourse or sexually transmitted disease; a history of cervical, vulvar, or vaginal cancer; immunosuppression after solid organ transplantation or human immunodeficiency virus (HIV) infection; hematologic malignancies; certain autoimmune disorders and smoking.

The association between anal carcinoma and persistent infection with a high-risk form of HPV (eg, HPV-16; HPV-18) is especially strong.  For example, a study of tumor specimens from more than 60 pathology laboratories in Denmark and Sweden showed that high-risk HPV DNA was detected in 84% of anal cancer specimens, with HPV-16 detected in 73% of them."

All this said, the only one of these risk factors that I had when I was diagnosed was being over the age of 50--at least that I was aware of.  Since then, I realize that I was most likely infected with HPV over 35 years prior to diagnosis.   I would encourage you to check out the above websites and learn more about this disease.    I also would not hesitate to print out those NCCN treatment guidelines and show them to your doctor who thinks smoking causes anal cancer.  Your doctor was right about one thing--this is still considered a rare disease, which may explain why there are so many cases of misdiagnosis among us, including me.  I think it's very common for physicians to assume that rectal bleeding indicates hemorrhoids.  All too often, such as my internist did, we are given a prescription for hemorrhoid medication and sent on our way.  Unfortunately, for some, this just delays correct diagnosis and timely treatment.  Anal cancer is on the rise.  When I was diagnosed, there was a prediction of just over 5,000 cases to be diagnosed in the U.S. in 2008.  Current numbers are now up to over 7,000.  It is definitely on the rise, but awareness by the medical community and general population is still woefully lacking.  All HPV-related cancers are on the rise, including oral cancers.  Okay, jumping off my soapbox now!  

I don't mean to be a spoiler here, but these are the facts and are published in numerous studies and information sources that discuss anal cancer. 

7243
Posts: 213
Joined: Feb 2011

Way back when .... 70s and 80s they did not test for HPV.   If a person had an abnormal pap, let's say, squamous atypia, dysplasia or carcinoma in situ .... This is usually associated with HPV.   To add to what Martha outlined above ... More than 80 percent of all sexually active people have HPV.   

The vaccine is important for young people to receive.  My opinion.

Sadly, many of our physicians aren't comfortable talking about sex or sexual issues. my doctor said to me, it is likely not HPV related, yet his note in medical record said the contrary...and that "we will test the tumor".  He never did that until I requested my record and rthis his notes.   The tumor was positive for HPV 16.  I had an abnormal pap in 1988...never positive for the virus during pap testing with dual pap (cytology with built in HPV) throughout my adult life.   

Please note I left the university cancer center where I got treatment and went to a reputable center where I trust the staff to tell me the truth no matter how "uncomfortable".

The personal nature of anal cancer us one of the reasons it stays in the shadows And remains mis- diagnosed.   And HPV is spread through skin to skin contact ... And migration of the virus in women from vaginal/menstral fluids.  one may not have a history of anal intercourse for the virus to establish itself in other areas.  Also ... A great number of oral cancers are related to HPV due to oral sexual contact.   Remember, most cervical cancers are squamous cell ... Due to HPV.   The virus migrates to vagina, vulva, and Anus...or thru direct skin to skin.   And anal sex is a normal part of many couples sex life. 

 

There is great work being done at UCSF where there is a well-known dysplasia clinic ... One day anal pap will be a more recognized preventative screening.

 Causation is important to understand for future prevention and identification ... We need to recognize cause, however our work is to find a team of physicians we trust, educate ourselves, make decent treatment decisions, reconcile with the past, and move toward a healthy future.   Having been through this terrible journey .... I realize this us not easy. 

LaCh
Posts: 509
Joined: Dec 2012

not all anal cancers are caused by HPV (I never tested positive for it) so the correlation between anal cancer and HPV, if one finds it troubling, isn't always the case and in any event, most people who don't have anal cancer don't know about the correlation. I understand your discomfort about the kind of cancer that you have but remember: everyone has an anus. Some people get cancer in it, some people don't, but everyone has one.  It took me many years (I'm almost 60) to get to the point of not caring what people think of me, unless they're people that know me. Their thoughts and feelings mean something because they're based on concrete issues. Strangers? Their opinions are based on nothing. In any case, everyone has an anus and talking about it doesn't make that any more or less true.  With the hope and intention of making you smile, I remember learning that Farah Fawcett had anal cancer and thinking, what the hell is that?  Does she have somehing hanging off down there?  Well, now I know the answer.  But seriously, people will be more understanding and sympathetic than you think.  Try not to worry too much over it.    

LisaMMiles
Posts: 38
Joined: Mar 2013

Thank you LaCh! My Dr never mentioned HPV to me and I know good and well I didnt or dont have that. He basicly said that smoking plays a huge role in it. And basicly it is just a cell or cells that went bad. And that a lot of bad stuff passes through there so it can be anything that could have made it bad. I am only 46 yrs old and the dr that removed mine thinking it was a polyp that would eventually go bad, was devisted when he learned it was cancer. He said I was absolutly healthy and not over 50. He was so upset that day he removed it and found it was cancer, he cancled the rest of his apts for that day. Cause he just knew it wasnt cancer, but was unpleasantly surprised by the news. 

LaCh
Posts: 509
Joined: Dec 2012

A natural human drive is know the whys of things. We always want to know why...  But sometimes that's just not possible and the best that one can do it learn to live with uncertainty and not knowing. I have zero risk factors for this cancer. None. In addition to never smoking, never drinking, never being overweight, never having HPV, I've eaten what we now call a Mediterranean Diet for the last 40 years.  Why did I get this tumor? I don't know but I don't need to know. What I do know is that I had it, I treated it and I assume that it's gone.  Living with peaceful acceptance with the uncertainty can be hard to attain but really, it's the best thing in the end. What matters isn't what caused it (unless one can mitigate those factors) but my point is that in the end, they could be nothing more than a red herring. If I had been a smoker, I would have said, Ok, I got it from smoking. Whether true or not, that's the cause I would have assigned, but once you remove every risk factor and you still get  cancer, the reason is unknown and maybe can't BE known. Stuff happens. The reasons are less important than how one responds to it.

7243
Posts: 213
Joined: Feb 2011

If cause is important to any if you, request the tumor be tested for the presence of HPV.  It can be done, however must be done within a certain period of time after the biopsy was taken.   And, as always, after full discussion with your physician.

This is a personal choice and a balance between your need to know and the implications of "knowing". some people could care less and just want to press forward with treatment.   I wanted to know so I can manage any risk in the future.

That being said your insurance may not pay, etc .... 

 

A thought ....

 

 

mxperry220
Posts: 358
Joined: Mar 2011

I never have a problem telling people I had anal cancer.  This cancer like any other cancer is awful.  I could care less what anyone may assume or think.  They do not pay my bills. After all the pain we have been through and post treatment issues no one is in any position to pass judgement.   Most of the time people only want to know if I am O.K.   I do not know or care what anyone may say behind my back.  Hope this hels a little.

Mike

pem
Posts: 61
Joined: Mar 2013

right on!!  i only wish i had your courage and determination.....pem

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I realize none of us are celebrities or rockstars, but I've often wondered what impact Farrah Fawcett could have had on awareness of this disease had she been forthcoming with her diagnosis and gone public.  I believe it could have been a positive one.  While I respect each individual's right to deal with this disease in their own way and their choice as to whether or not to keep it private, I think Farrah Fawcett's decision was detrimental to any efforts to bring this disease out of the shadows, adding to the stigma and shame.  Whether famous people want to admit it or not, some have a huge following and can use that in situations like hers to educate people and potentially save lives.  I feel the same way about Michael Douglas and his cancer experience--it was chalked up to his use of alcohol and tobacco.  Perhaps it was, but if it was HPV-mediated, another golden opportunity was missed to increase awareness. 

Even though none of us are famous, when we share our story with others, we have the potential to save lives.  That's just my personal opinion.   

7243
Posts: 213
Joined: Feb 2011

Total agreement Martha.  Michael Douglas another missed opportunity .... 

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

I too sometimes still have trouble saying "anal cancer".   One of the first people I told the diagnosis to was a nurse and her response was "well, good luck with THAT"!  It was like a slap in the face.  So, for a long time I refused to identify MY kind of cancer.  Well not any more!  I'm 17 months out of treatment and NED and I think (when appropriate) we SHOULD identify what we have and how important colonoscopies are.  BUT ONLY WHEN AND WHERE YOU ARE COMFORTABLE!  Not required behavior for sure!

Until then, just say it's a rare cancer and not even give it a name.

I DO see a phycologist. Sometimes you just need someone to talk to where you can say ANYTHING and it stays there!  And GET OUT OF THE HOUSE!  If it's just for coffee with a friend...  Depression is too easy to fall into....  Big Hugs ..

LisaMMiles
Posts: 38
Joined: Mar 2013

Since you have been done for a while now, can I ask if you are still having any side effcts? I am so ready to be completly healed :)

M1234
Posts: 17
Joined: Oct 2012

I finished up treatment early Decemebr 2012.  Am still experiencing side effects.  The burns have healed, the bowel movements have improved and I have greater energy each day.  However, I have permanent nerve damage - which became apparant as I attempted to back off pain meds and the meds began to not work as well.  The skin of my 'private parts' continues to be irritated and sore.  Finally got a referral to a dematologist this past week and he offered up a game plan to address my skin issue.  My recommendation to you is to be patient with your healing process.  I have heard lots about 'living with a new normal' after cancer.  I am finding that the 'new normal' maybe a moving target.  Regarding your concern about sharing what type of cancer you have.  I have chosen to tell very few and am not sure what I will do when 'I go back out into the world'.  My dentist receptionist actually asked me what type of cancer I had!  I guess it is important for your dentist to be in the know....but the receptionist?  I live in a very small town - think I'll ask the dentist not to put it in my chart but keep the 'type' to herself.  Wishing you a speedy recovery.  Take to heart as many have stated on this site - it does get better.

 

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

Side effects, hmmmmmm..  Yes I do.  Fatigue and depression rate high on my list.  I have learned to stop and take a "coffee break" a couple of times a day as needed so do mostly whatever I want.  My bowels still become inconsistent if I eat wrong, over tire or sometimes just because.  However i can WEAR JEANS WITH COMFORT!  I was afraid I would be commando in long dresses forever!  Here's to never pooping razorblades again!

I just drove to my daughters. 800 miles,took two days, then to houston, 5 hours and back to my daughters and then home again.  I will not do this again because I am Way too tired but at least I know I CAN.  

You will get your life back,though it may be different.  Best advice?  Use your dialators as soon as you can...   Hugs and well wishes, Lorikat

 

 

BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

Pem,

I am sorry about your struggle. 

At first I was horrified at my diagnosis, after some time I realized my horror was more "cancer" related than "anal".  I did not test positive for HPV but would not have been surprised based upon the many, many strains and difficulty regarding early detection (oh and also the fact that although I was not a wild woman I did not meet my true love at 18 and stay forever content)Kiss  

My sig other initially suggested I refer to it as colorectal as that wasn't a big stretch.  I did that a couple of times and found the lie to be more uncomfortable (for me) than telling the truth. The treatment is exhausting enough!

I, too, wish Farrah Fawcett would have screamed "ANAL CANCER" from the rooftop to help with awareness and research efforts.

Very personal decision for everyone and I don't think there is a wrong one so do what you are comfortable with.  I have chosen to tell people and have found that those who care about me could care less about they type of cancer I have but care that I scream through treatment and carry on.  If some are talking behind my back I figure if they are gossiping about me they are giving someone else a break.

Take care and best wishes.   

LaCh
Posts: 509
Joined: Dec 2012

Personally, if I decide to share that I had cancer at all (I share it with friends and don't share it with strangers) I don't have any problems saying what kind of cancer I had. I don't care and they don't care where the tumor was. Everyone's got an anus. Mine just happened to have a tumor. My philosophy is "don't sweat the small stuff," and most "stuff" is small. That said, I understand that my philosophy, my feelings and the lens through which I view things isn't the same for everyone.  This is just my take.

Eliz3
Posts: 32
Joined: Feb 2013

I remember when my sister told me about her cancer, I only gave thought to what kind of tumour it was, and had it spread, I gave little thought about where it was located, other than the fact that it was an unusual spot...wouldn't have made any difference to me if it had been bowel cancer or anal cancer.

No one is embarrassed about cervical cancer, so why is this any different, who cares really, it is the treatment and it's success that matters.  I wish no one had to feel ashamed, it is too unfair, cancer is cancer.  

 

Missgrace's picture
Missgrace
Posts: 36
Joined: Apr 2012

A big part of the stigma of having anal cancer is the fact that the publicized risk factors are "Frequent receptive anal sex, multiple sex partners, prescence of the HPV viris," etc. Personally, I was never tested for HPV or asked anything about my sexusl history. I've been married twice but never had anal sex, so the only risk factor I have is age--over 50. I was asked about smoking (I dont). Since so many posters on the various anal cancer forums do not have any of the risk factors, it makes me wonder where all the 50-90 year old women are--the HPV infected ones who are smoking while having anal sex with multiple partners. I have also noticed that quite a few posters are 40 or younger. I had two acquaintences who died of anal cancer;both women were in their 30's.

My point is thst no one seems to care about the risk factors enought to report them correctly. I did days of research on risks and gave my findings to my oncologist. He yawned and put my neatly typed "term paper" in his pocket. I guess the cancer is so rare that no one cares what causes it, nor do they care about the emotional trauma of the few of us who have it. It also irritates me that most authorities state that it is a cancer of 50+ year old wonen. This statement causes many younger women not to be tested.

Now that I've vented about how embarrassed I am to tell folks what kind of cancer I have, I'll admit that I do it anyway. My biggest complaint is that, when most of them go home and check the internet, they think I am some sort of promiscuous pervert who shouldn't be surprised that I have contracted this disease. You are right, Eliz3, no one is embarrassed about cervical cancer, so what's the difference? It's the  false, but widely distributed "causes" of anal cancer.

Marynb
Posts: 1134
Joined: Aug 2012

Missgrace, you are right. Recently, I was listening to a debate about gay marriage and some religious zealot said that there was a public health concern because the gay lifestyle was causing an increase in anal cancer. Well, not too long after, my cell phone was buzzing with text messages teasing me about anal cancer. I personally think that I was exposed to hpv virus by exhusband who was unfaithful. I do think there are many married women exposed to sexually transmitted diseases by cheating husbands. Sad, but true.

Missgrace's picture
Missgrace
Posts: 36
Joined: Apr 2012

mp327,

  Since 80 to 100 per cent of the population (depending on source of information) is infected with HPV, how can it be considered a risk factor? You may as well say that if you have two ears, you are at risk. I don't understand, but I'll reread your recommended article.

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

You make a good point.  I truly believe this is one reason that a lot of anal tumors are not even tested for HPV--it's just assumed that HPV is present.  Personally, I think they should all be tested, as even though the majority of anal cancer cases are thought to be HPV-mediated, they are not all, according to what I've read.  As for HPV being present in most of the population after the age of 50, keep in mind that this refers to ALL HPV strains, not just HPV-16 & 18, which are felt to be the ones that cause cancers such as anal, cervical, and others. 

LaCh
Posts: 509
Joined: Dec 2012
  • Unless there's a reason for a person not experienced with anal sex to know about the (possible) causitive factor of hpv, people don't generally know.

 

  • People who have never had hpv, or any other risk factors for that matter, get anal cancer.

 

  • What's wrong with anal sex between two consenting adults?  

 

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

LaCh...  I don't really think any one was holding fault with ANYONE'S bedroom pleasures or sexual orientation.  Behind closed doors and all that...  HOWEVER it's kinda like when my first doctor told me this was usually a "gay mans disease"...  I was obviously a middle aged, married WOMAN with kids.....  So why would I get this cancer?  Obviously, according to this doctor,I did NOT fit the profile.   (he kinda laughed when he told me this...  If I could have thought straight I would have asked him if he thought it funny that gay men get this cancer)

Ok, it is obvious to me that anal intercourse is NOT the main cause of anal cancer, reference  age 45 andabove women with this horrible disease, just ONE possible contribution to the possibility of cancer.  For many of us it could be having hemmoroids caused from pregnancies and giving birth.  HPV...  Even IF we have only one sexual partner ourselves, if our choosen partner has had sex with multiple partners all bets are off.  

The point is, ALL information needs to be given to everyone without predjudice and with truth.  So many of us were raised to not even SAY anus, admit to a sex life or mention bodily functions (such as menistration cycles) that yes, we are sometimes uncomfortable.

Just saying...

Phoebesnow
Posts: 447
Joined: Apr 2011

Omg.  You brought back some memories.  I told very few people I had anal cancer.  My family so they could protect themselves if necessary and one friend.  This friends response was "OMG, no nice Irish girl should even have to say that word."

 

 

I bet there are a fair amount of nice ladies out there having anal sex.  I would imagine some might even have experimented in there youth.

 

And lastly Drs go to school and then they stop.  From that point forward they evolve just like us.  They develop prejudices and preconceived notions unfortunately just like the rest of us and that includes nurses too.  Sadly most drs and nurses are not that updated on conditions such as anal cancer, ataxia and so on.    If u look back thru the threads one of my early posts was about the chemo nurses parting words to me were "You'll be back".  I had to excuse this ignorance because she probably did not know much about anal cancer and that recurrence was at a muchlowere rate than colon cancer.  Many of the posters here were angry about her response but I have found that I have encountered a lot of ignorance in,people since dx.

 

 

 

LaCh
Posts: 509
Joined: Dec 2012

I suppose.  For my part, my take is we all have the same body parts, sometimes they "get sick" and that there's no shame in any of it, no matter the method of acquisition. As for normal body functions, even those that don't connote illness, well, I dunno.  Since shame isn't part of my experience, all I can say is that I respect the fact that some people feel it.  Anal sex---and I think that that's a sticking point for many people on this blog, unless I'm mistaken, simply because it seems to be mentioned together with the shame factor --is a normal part of human sexuality, not all engage in it but many do, whether they're gay men, heterosexual couples or anyone who chooses to have it.  Things in life--all things--and that includes words, take on a good or a bad connotation based soley on how we decide to label them. Alone, they're neither good nor bad but neutral. There's way too much shame assigned to things that simply don't warrant it.   

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

Well said.  And I agree.  And personally?  Im only interested in what goes on in MY bedroom/life!  

LaCh
Posts: 509
Joined: Dec 2012

Thanks Lorikat, it's always good to know that at least someone agrees with me, as I often seem to find myself on the "what did you just say??" side of the fence, and while I won't compromise myself and say something I don't mean or agree in word to something that I don't really agree with, I don't particularly like being on that side of the fence. For people who have trouble seeing past the "shameful/non shameful" conundrum, another way to look at it is by asking the questions, "Why is it that the sound of coughing isn't embarrassing but the sound of passing gas, is?" "Why is the sound of someone peeing not as embarrassing as the sound of someone moving their bowels?" (and I'll also add that these are influenced by cultural norms because they're not always as we perceive them here in the U.S.) "Why is blood from menstruation embarrassing but blood from a cut arm is not?" Why do we say one kind of sex is ok and another kind isn't?  Why is it easier to say "I have colon cancer" (or leukemia or lymphoma or any other malady, cancerous or not) than "I have anal cancer"? Sometimes asking why? can be helpful in putting things in perspective and seeing that it needn't be. These are all just judgements that society--ours-- has collectively agreed upon and after a while, people forget the value in asking why?  I'll also add that being private is not the same thing as silence driven by shame. I'm a very private person; I'm not on Facebook or Twitter and if someone googled me, they'd come up with zero hits. It's my nature; I'm private. But it isn't driven by shame and I think it's important to recognize the difference between the two. Another way to illustrate the difference is that there are many, many people who I haven't told that I had cancer. There's no reason to. They don't need to know and I don't need them to, but for those who I've told, I have no problem with telling them what kind I had, and I do. 

Marynb
Posts: 1134
Joined: Aug 2012

When you are raised an Irish Catholic girl, shame is your unofficial middle name! God bless my late mother, she meant well and truly believed that shame was a good thing! I hope I didn't pass this on to my daughter!

LaCh
Posts: 509
Joined: Dec 2012

I'm not saying that it's easy to shake off cultural or religious conditioning but the first step is in saying "why?"  Why is this the way that it is? Why do "they" say so-and so? And of course, good Catholics don't ask why because that's no longer being a "good" Catholic but asking why and chasing down the answers is the first step to rethinking things. Hard as it is, even harder is having a new perspective, a different answer go from the head to the heart where it becomes as natural (or hopefully, as natural) as the old belief once was. That's the tricky part. It helps when you're surrounded by like-minded people who think what you think (whatever that is, whether it's Catholic teachings or a more relaxed way of thinking--or anything in between.)  Easy? No. Possible? Yes. Worth the work that it takes? That's something only the person doing it can answer.

Phoebesnow
Posts: 447
Joined: Apr 2011

It's funny how easy it is to bash the Catholics even by Catholics.

 

Is this a preconceived notion and a prejudice?

 

Anyway I think I made my point, everyone is guilty.  Oh, unless your perfect.

 

Yes shame, guilt all that crap my parents gave me in the 60's and 70's trying to install a moral compass in me.  Rules to live my life by the only way they knew how to teach them..  Like any child I wanted my parents approval and tried to live by their rules while living in their house.  It seems to have been pretty effective as children weren't shooting up schools and performing as little terrorists.  We knew our place.

 

Oh and this catholic has always asked why and how?  Nobody ever beat me down for this.  I never even heard that we we're not supposed to ask why.

 

 

Recently I was watching the channel 4 news and dr nancy synderman was dispelling health myths.   The common cold cannot be caught from a chill, wet hair or any of those old myths is what she was saying, that it is an infection that needs to run its course.  At the end of the statement she perpetuated the myth by qualifying saying you should wear a hat as you lose most of your warmth trru your head.  Boy that last statement annoyed me.

I am obviously the black sheep here, it's rare that I hear any opposition to what u have to say LACH. 

 

 

 

LaCh
Posts: 509
Joined: Dec 2012

Oh, well, I'm sorry if I offended you or others. It wasn't what I set out to do.

Phoebesnow
Posts: 447
Joined: Apr 2011

Ok. Thanks.

Marynb
Posts: 1134
Joined: Aug 2012

I understand what you are saying and maybe I gave the wrong impression. I have a very strong moral compass and I thank my parents for that. I ahve always asked why, much to the chagrin of the good nuns at my Catholic college. I was raised in the 50's and 60's. i still believe there is a right and wrong and I do not accept relative moralism. I think having a conscience is a good thing. Shame is counterproductive.

Phoebesnow
Posts: 447
Joined: Apr 2011

I agree with you.  I am a super liberal, non judgmental, hates gossip, straightforward person you will ever meet.  I did notstarts out that way, I was my parents, because that is what I had learned.  But I evolved .    I believe that everyone should do whats  right for them as long as it does not hurt others intentionally.  A simple philosophy a simple life.I merely repeated a comment, it was not my philosophy.

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

Don't forget guilt! Those were the two methods of child rearing in the south. Guilt and shame.... For me I am ALWAYS guilty of something!

Marynb
Posts: 1134
Joined: Aug 2012

Don't forget the devil! In my Irish family, it was well known that if you committed a sin, Satan himself would appear at night when you put your head down on the pillow! Lol. Let me tell you, that scares the heck out of a kid and I was soooooo good! LOL.

debbie880
Posts: 1
Joined: Apr 2013

I am constipated and had a pain in my anal area one day that stopped me from getting up so now i need a colonoscopy and an endoscopy.  Will see what happens.

 

What were your symptoms of anal cancer please?

debbie

Phoebesnow
Posts: 447
Joined: Apr 2011

Symptoms vary.  One I hear over and over again is bright red blood a little and sometimes a lot.  My anal area was itchy at night and felt wet.  My dr told me itwash a hemorroids.  You hear that a lot too.  I had no pain.  I was losing weight and eating everything in sight.

 

I hope that your results will be good news.

 

Have you had a DRE or Anascope?

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

The following is a list of the symptoms I experienced.

1)  Rectal bleeding

2)  Abdominal Bloating

3)  A feeling of never being completely emptied out after a BM

4)  Unexplained weight loss

5)  Mucous discharge from rectum

6)  Chronic constipation

7)  Fatigue

Please note that the rectal bleeding was the last symptom that appeared.

Marynb
Posts: 1134
Joined: Aug 2012

My my main symptom was pain, especially when getting up from a chair. I had a lump and itch, that the doctors told me was a hemmorhoid. I hope it is nothing, but you are doing the right thing getting it checked. I, along with many others, was misdiagnosed for years, despite increasing pain and fatigue.

Eliz3
Posts: 32
Joined: Feb 2013

Hi Debbie,

There is a condition called Proctalgic Neuraligia, basically it is an unbearable but benign pain in the back rectal area.  I first experienced it when I was in my teens and again in my mid thirties, it can be almost unbearable but gradually subsides each time, maybe within 20 mins.

I read all of this thread again and it really saddens me to know that most of you feel shame.  Not only have you had an incredible shock with the diagnosis but then shame sets in too.  As I mentioned earlier, my first reaction to the bad news was not about the location but the stage, my other family members reaction was the same.  

Pem, you do sound so sad, I am sure as time passes you will start to think more about enjoying your life and less about shame.  Meanwhile, you have us to confide in and maybe get a laugh from.

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