It Feels Like an Epidemic

Having had a rare cancer for more than four years now I have gotten used to the fact that there are not many people like me. For the longest time I really only knew three other people that had my cancer one in my actual city and the other two at a distance really by happenstance. But as my mission to raise awareness has grown so has the number of people I have connected with that have my dreadful kind of cancer. The more people I meet I have noticed that a lot of them are just like me. They are my age and were caught off guard much like myself with their diagnosis. They share the loneliness that is created by the stigma of anal cancer and fostered by the reactions of people, however unintentional they might be.

Anal Cancer is considered very rare. There are 7,000 cases diagnosed every year. It sounds like a lot of people, but if you understand that for cancer, or any other disease for that matter, to be considered "rare" there must be less than 100,000 cases diagnosed per year. So, 7,000 is a pretty puny number in that regard. In a city like mine, that's about 10 - 15 cases per year according to the cancer center that cares for me. That's not very many. 

Enough with the statistics already, here's the story. My local station came and did a story about me and my quest to raise awareness about anal cancer.  I have attached it at the bottom if you want to see it. No pressure...only look if you want to. Any way, The story aired and there was a flood of feedback on the station website and on their Facebook page. My Facebook also had a mini rush on it mostly composed of dear friends and family re-posting the story with their kind and supportive comments. Not so of the comments made on the news station sites. I have tough skin so my feelings were not hurt as people debated STD and anal sex in open forum. "At least they are talking about it." I thought. It is raising consciousness for the disease itself. You have to take the bad with the good. It's part of it. It just is. So I did refrain from commenting back and posting responses to the less than kind comments.

Amongst all the comments about HPV and deviant sexual behavior there was one comment that kind of stuck in my craw in a bit. Interestingly it had nothing to do with either of those subjects. It was one where some one had broken down the statistics by state using simple math saying the cancer is rare with about only one person per county in Kansas diagnosed per year. First of all, there are much less than that here in the midwest. Second, I did not like the tone of the post at all. It felt like my cancer was so insignificant in number that "why bother" trying to save such a small number of people...like I was wasting resources that could be used for other more common cancers as well as my breath and everybody's time bringing anal cancer to the everyones attention. Like my story was stupid because the impact would be so small for such a tiny group of people.

Well I just want to clear a few things up publicly. Although my cancer is rare it is not rare to me since I actually have it. That makes my chances of getting it 100%. Secondly, squamous cell cancer diagnosis has grown by 30% in the last year. That makes anal cancer part of the fasting growing cancer today. Thirdly, early detection saves lives and the best way to ensure that is to educate. That means somebody has to speak out and that somebody is me. I think my life has value and is worth saving as are the lives of the many folks, mostly women my age, that I have connected with as a result of us sharing this rare cancer. 

So what's my point? Did I come out here on my blog to vent? In some respects yes. My point? It may feel like an insignificant number to many people, those not effected by anal cancer in some respect, but the more I learn and the more people I meet with my disease...to me, it feels more like an epidemic.

http://m.kwch.com/video/cancer-survivor-says-toilet-paper-saved-her-life/25407474

Carol threw a punch at your cancer.
Carol sent you a prayer.
4 people sent you a hug.
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What is so simple minded about where people are diagnosed is the fact that people are mobile. I am a Midwesterner. Born in Ohio, lived good portion of my life in Midwest including Ohio, Iowa, Michigan. Please! I would Luke to say to each of then that I pray they or no one close to them gets one of these rising cancers. And I pray that in my head I wouldn't say JERK!
Michele likes this comment
I guess I am not done ranting. Let those with no sin throw the first stone. It sure feels like we are being condemned!
Michele likes this comment
Right on! I have been openly sharing too. I actually remember a friend telling me she had cancer last year and when I asked her what type, she smiled gently and said anal. I was set back by the personal nature of that word, but I looked her in the eyes and carried on the conversation knowing that the uncomfortableness was my issue not hers. Farah Fawcett helped us a lot y being outed with it. 7000 cases each year. Did you ever think you were going to be a cancer fighter? I sure as heck did not. I am a vegan vegetarian gluten free wheatgrass drinking running yoga instructor! But I do have hpv. Apparently so has 80% of our population at one time or another. I have been clean and sober for 29 years and am a non smoker. But I had HPV in 1992 and had cervical carcinoma in situ that had to be surgically removed. Did you know there is a higher incidence of anal cancer in women with this history? No one ever warned me. So here we are, unwilling pioneers in a medical rarity. I love that you have tough skin. I am working on mine. So you go sister, I have your back here in Seattle!
Michele likes this comment
I am not hpv positive. But I too had pre cancerous cervical cell removal via a conization 24 years ago. My reasearch found this was maybe why I got this cancer! No Dr ever told me either. Although over the years I worried about uterine cancer. Should have been asking Dr's about anal cancer. If I had only known
You are so pretty on TV. I love your kitchen too!! You are one amazzzzing woman. Your sharing and care for others shows such great compassion for others. The cross you bear would be enough but you push past it and give all of you. That is the most precious gift and I know what you have done will have an effect on the cure of this disease. Everything matters. I love you Michele, every time I see those small hands of yours behind your head, I have such admiration for your courage. Looks like you have a wonderful husband who loves you very much . What a blessing he must be... I am praying for you my friend... Thankyou for sharing this and you... hugs and love Sabina
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You keep doing what you're doing! My cancer (nasopharyngeal carcinoma and also a squamous cell cancer) is also "rare" but is associated with both HPV and EBV (epstein barr virus). I have the EBV variety, but I have had HPV in the past like 80%of the population! I believe cancer is increasing. My aunt was just diagnosed with a "rare" type of breast cancer (Paget's Disease) and a few years back my uncle had another "rare" type of cancer. (I can't remember the name of that one.) I don't get it, but if your story can help one mother, father, sister, brother, etc. get diagnosed sooner then it is definitely worth it. I need to start making my story known to help people get diagnosed sooner. My cancer can be cured with way better odds if caught early. My ENT was not knowledgeable enough which caused a few misdiagnoses and unnecessary sinus surgery.
I was diagnosised HPV negative (with my anal cancer diagnosis) but had breast cancer 25 years prior. Somehow I think all these things are related. I few months back, I had a woman ask me what type of cancer I had and I told her anal. she started laughing! This was a person I knew who seemed to care about me and her reation floored me...I felt like I had to explain myself! Did I ask for this? NO. Am I a bad person? NO. Did I deserve that kind of reation? NO. But people are most concerned about themselves and their fears, so although I do tell people I have anal cancer, I am now better prepared for whatever reation they throw at me.
Michele, Betsy like this comment
GRRRR!!!! SO INFURIATING, the way some people posture and judge. I have heard it all, just as you have Michele, and I've tried to confront these judgments straight up when I talked to students or otherwise made public statements. #1, HPV infection is extremely widespread, nothing rare about it! #2, sexual assault is also extremely widespread and certainly is not declining, so the only "deviant" sexual behavior that might be needed to contract HPV infection might well be a rape. NO ONE can guarantee that he or she will not be the victim of assault. (I was in my bed in my own home in the middle of a snowstorm.) #3 We do NOT know that all anal cancer comes from anal sex! #4 There are now confirmed findings that some disinfectants do not kill HPV...#5 HPV was only identified as an active cancer agent some 25 years ago, and there is a great deal we don't know about
this family of viruses, which has been around for millions of
years, a lot longer than the human family has!

I hope that some of your commentators will realize that working to prevent the spread of HPV, through the vaccination now available, will help prevent a large group of cancers, as will a simple exam by a doctor every year. They may be rarer than lung cancer or breast cancer but each life is precious to its owner.

Thank you Michele for everything that you have done and are doing to remove the stigma and educate people. Keep on talking!!!

Michele likes this comment
Good spot and you are so cute! :)
Michele likes this comment
I don't feel cute lol...I feel puffy from my steroids! But thank you :)
I work in a school in tech support and walked into a classroom just as a video (yes, VHS) was explaining to students that HPV is genital warts. I looked at the teacher and told her that that wasn't entirely true and that just because someone has HPV doesn't mean they will get genital warts. Since it was during classtime, and I was trying to be quiet, I didn't have a chance to go into too much detail with the teacher. It was frustrating that students were being taught this from a dated VHS tape. My charts have said both rectal cancer and anal cancer. I finally asked my doctor a couple of weeks ago what exactly do I have. She said, because it is squamous cells, it didn't matter the location (rectal area), it was anal cancer. I have to admit, I don't freely tell people that. Most people at work think I had colon cancer. If they read my blog, they probably know it was anal cancer. Hopefully someday there won't be the stigma attached to it. Like many people, I have never been diagnosed with HPV and didn't engage in "deviant sexual behavior." Until HPV isn't considered solely an STD, anal cancer is going to continue to get a bad rap. Just my opinion. I think, for me, that's why it's embarrassing. I don't feel like me having anal cancer should mean that it was caused by an STD. For the record, I don't think HPV is an STD. I think it's a virus that, for most people, their bodies fight it off. For some of us, it turns into something more.
Michele likes this comment
I believe you are right and I share the same thought process. I tested negative for HPV my whole life including my tumors. Does that mean I have never he HPV? I say no. Skin to skin contact is all that is necessary.

Thanks for the support!
Michele
My radiation oncologist said that since I had several PAPs in the past that had to be repeated, chances are that I had HPV. I told him that I had additional PAPs, and a colposcopy, and was never diagnosed with it. Oh well ... to have, or not to have ... that is the question. :)
Kudos to you Michele, for being so brave. Yes, anal cancer is very difficult to talk about. (not to mention the doctor visits!!)

Snarky people are going to be snarky. Thank you for trying to help save others.
Michele likes this comment
Good for you for being brave and not listening to others. How dare anyone judge another for things they no very little about. It is great to get the word out and even if it is rare today.....in a few years, it will not be so rare. That is one of the bad things about cancer. Hugs to you!!
Michele likes this comment
What a great news story, Michele. Just last week someone at work was telling me about a friend who has anal cancer. I had to keep quiet because this is a new job and I've told no one I had cancer. But more and more (unfortunately), more people are getting this cancer.

Mari
Michele likes this comment
People just don't have a clue when it comes to this disease, that is unless they are someone who has this disease or has a family member who has it. I think it is pathetic that people would berate you for your efforts in educating the public about a disease that is on the increase and can affect ANYONE! In the big picture, I guess 7,000 seems like a small number, but it sure feels huge when you are one of those 7,000. Every life is valuable--EVERY life. God bless you, Michele, for speaking out about this disease. I'm glad you are not letting the nasty comments hold you back! Love and hugs!
Michele likes this comment
I had never heard of the HPV/SCC connection until read about it here in BFAC and then checked a bit further. I've asked my oncologists was I tested for HPV and do they think there's a connection, but they've shrugged that off as irrevelant! We do however have HPV immunisation through the school systems, with it not long ago being introduced for male adolescents as well as teenage girls.
Also, recently our state cancer council called for people to participate in a research project on 'rare and forgotten cancers' with a list of those cancers that did NOT include Anal Cancer. So I sent a message asking if AC had been deliberately left out or just forgotten! response was that it was so rare they just hadnt included it in the list but anyone with AC was more than welcome to participate in the project. and so i did.
Michele likes this comment
Michele,
I heard and keep hearing Anal cancer is so rare...this past week 4 new members to our Butt Club...makes me wonder, how many that don't find us
Jeanne
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Vital Info

Posts

October 3, 2011

Click Here

January 31, 1963

Cancer Info

Anal Cancer

Squamous Cell Carcinoma of the anus

February 5, 2010

Stage 4

2.1 - 3.0 cm

Grade 3

No

As much as possible

Proceeds from my published blog donated monthly

It is a thief

You have to live every day of your life and stay positive :)

Donate $$ to the anal cancer foundation. Raising awareness saves lives!

Is there anything good about poison?

Bone, lung recurrence 9/20/2012

Cancer Center of Kansas, MD Anderson

Bland diet, sitz baths, take your drugs...nobody gets extra credit for suffering.

Talk, talk, talk to somebody. I chose to write.

April 20, 2010

September 20, 2010

Rectal bleeding, itching, sciatic pain. (thought my hemorhoid was acting up)

My blog has been published and proceeds go to The HPV and Anal Cancer Foundation. http://tinyurl.com/72bjjfp

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