telling people you had anal cancer

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.

mp327 said:

Lisa

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!

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

Marynb said:

Talking about it
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?

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.

7243 said:

You

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.

 

 

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 said:

HPV

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. 

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. 

mp327 said:

HPV

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. 

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 ....

mp327 said:

Going Public

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.   

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

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 said:

Lorikat

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

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.