[HighFlyinBey++]

I'm a 3 year survivor. Ask me anything! I promise I won't find it rude and feel free to use Beavis & Butthead humor. I did and I wouldn't have gotten through treatment without it

How'd you get it? Nobody's quite sure, but the doctors like to blame it on HPV.

Really though, how'd you get it? Did you um, er...? It's not necessary to have anal sex to get anal cancer. Women can get it by simply spreading the virus with front to back TP cleaning.

How'd you know you had it? I had some bleeding that was initially thought to be a hemorrhoid. I could also feel something wasn't right when I used a tampon. It wasn't until I had a seriously scary bleeding event that sent me to the ER that things were set in motion for diagnosis. FYI, DON'T go to the ER for anal bleeding unless you're losing more blood than you'd donate. They can't do anything for you but take your money and recommend a proctologist.

How'd they treat it? I had a 6-week long trip to hell. I received chemo through a port in my chest for 96 straight hours the first and fifth weeks. I also received radiation treatment 5 days a week for those 6 weeks. It's the combination of chemo & radiation that takes out squamous cell carcinomas.

What were your side effects? I lost all the hair on my head and my pubic region. I lost 30 lbs. I also had what the radiologist called a "sunburn" in my anal canal which made if feel as though I was passing jagged glass pineapples for 6 straight weeks. I'd scream into a towel. My digestive tract is still screwed up. I can now eat hot peppers without heartburn but I can no longer eat tomatoes without er...a problem. I also have stenosis in many of my pelvic muscles and...other ...lady areas and it's a good thing I'm single. I'm also sterile.

Honest, ask me anything! I'm very happy to educate people on this rare but very survivable cancer!

[stolen virtue]

I am so glad that you are here with us today ! Hope you will be here in your 90's telling about it-and barely remembering your cancer.

[HighFlyinBey++]

Thanks, stolen virtue, me too!

[mercedespony]

Can you post your symptoms before and during diagnosis, so others can see?

I just spent a week with a good friend who has now been diagnosed with terminal pancreatic cancer. They had been treating him, for the last 2 years, for IBS. Boy, were they wrong.

Knowledge is key.


And congratulations on being clear for 3 years! I have had a number of procedures in the netherlands as well, and I too have lost all modesty.

[BLBGP]

Happy to hear you're ok!

Anal, not colon? If you lost so much weight, why are you so worried about your weight (on another thread)? Thanks for being so candid, glad you're happy.

[Mara]

Well, since you threw out the welcome mat. . .

uh, huh huh, you said "anal". That was cool.

No, what's cool is you are still here. I do have a question that's crossed my mind a couple times since Farrah Fawcett was diagnosed with it - what differentiates cancer of the anus from rectal cancer? I'd always sort of thought of the anus as just, well, you know, the opening, so I figured that cancer there would be more of a skin cancer type thing. I thought once things went up inside you were in the colorectal region? Obviously not.

And since it's thought to be HPV-related, is there any correlation between cervical and anal cancer?

Thank you for being so open about this - and it's great you can have a sense of humor about it. It's nothing but good when these things are demystified.

[twotrudoc]

Sense of humor or not, your post made me feel so bad you went through that.

I'm glad you are here too.

[fooler]

Congratulations! So happy you are still with us. And thank you for speaking on this subject.

[CobJockey]

Women can get it by simply spreading the virus with front to back TP cleaning.

Wait...we're not supposed to wipe front to back? I thought that's what we were supposed to do, ideally, in a perfect world. I give up!

[HighFlyinBey++]

Symptoms: nothing other than a small amount of blood on the TP and later, a "funny" feeling with the tampon. I did some personal exploring and found a lump where a lump ought not to be and obviously in the anal canal. I had my pap exam shortly after and the gal thought it was vaginal and told me to see a GYN. The first one I called said it was a 3 month wait so I went to my primary care Dr (the first time I'd met him since I'd moved just 2 years prior and thought I was healthy). His exam found a hemmie and the funny lump. AC is so rare that few Drs know what it looks like and he completely missed the diagnosis. The proctologist gave me a horrid colonoscopy and the correct diagnosis.

The googles are correct: If you see blood on the TP, IT IS NOT A GOOD THING. Call your Dr immediately!

Location yes, anal. It was maybe an inch inside the sphincter, where the external skin starts to transform into internal skin. Squamous cell carcinomas can form on any external type of skin. Mine was "classic." Rectal cancers are higher up but still near the opening and colon cancers are in the large intestine itself. Rectal & colon cancers are different than anal cancers.

Weight I lost 30 lbs during treatment and gained 45 back, thanks to a screwed up thyroid, forced menopause and normal aging. I've lost 4 since my thyroid was better controlled.

Type While AC & cervical cancers are both HPV-related, they're not the same type of cancer. http://en.wikipedia.org/wiki/Anal_cancer
http://www.cdc.gov/std/hpv/stdfact-hpv.htm

One thing I did discover thanks to Wiki, was that plantars warts are a common sign of HPV. I had them for years, then they suddenly disappeared. Were they somehow related? I don't know.
http://en.wikipedia.org/wiki/Human_papillomavirus

My brain has decided it's time to shut down for the night. If OT posting ends before I can post again, I'll continue to answer questions over the Thanksgiving OT holiday. Just not during dinner

[HighFlyinBey++]

Wait...we're not supposed to wipe front to back? I thought that's what we were supposed to do, ideally, in a perfect world. I give up!

That's what I thought, too, until some AC women in their 60s shared their experience. They said they'd never...experimented (trying to keep it family-friendly yet educational). Their theory was the virus transferred with front-to-back wiping. They decided girls should not "cross the streams" and keep the TP for each job totally separate.

[ex-racer owner]

I'm glad you're here, too! I lost my mom to colon cancer. As such, I get to have colonoscopies every third year (I'm 35 now, started when I was 32). It amazes me that people are so reluctant to have a procedure done that literally can save their life. I have to always bring up how the dying of cancer is a lot worse than the procedure.

I think its great that you brought this up and want to raise awareness, as well as put a bit of humor into the situation.

My question...what is stenosis? Oh, you also mentioned that it is a very survivable cancer. Is that just if you catch it early, or is it easily treatable, so even if you don't catch it early, the doctors can still do something for you?

[HighFlyinBey++]

I seriously have to reconsider colonoscopies. The tissue around my sphincter is so fragile from the radiation that "going" too often (as in 3 or more times in a day) causes bleeding, as do certain foods such as tomatoes Since I bled after the cleansing process BEFORE radiation, I'm sure I'd be a horrible mess now. I know I'll need one again someday, but it's a real balancing act.

Stenosis is a shrinking or tightening of a tubular vessel and other tissue. While technically not stenosis, the muscles in my lower pelvis are so tight that it's extremely painful to the touch even today. I can't let the chiropractor touch me. He has to use the activator device.

TMI, but here goes in the name of education: my vaginal tissue has also shrunk, to the point that the dr can't even use the baby speculum to do the pap exam. I'm basically a born-again virgin, except that NOBODY is touching me again. EVER. It's much, much too painful. Thus a good thing I'm single.

I also really, really need to go to bed

[Traum]

I always meant to ask you this... is anal squamous cell the same as any other squamous cell? I keep meaning to ask my derm but between pointing out 'things' I've found, it gets forgotten. I had a squamous tumor on my face and the treatment was the same drug but not the same route of admin. Maybe it was because of the stage? I dunno. And, I'm glad your'e here too

[Simkie]

WOW! Thank you for your bravery in talking about this. It is wonderful that treatment has worked so well and I'm glad you're here with us

Is this something that has anything to do with age? I would never ask you how old you are but does the HPV vaccine offer protection?

[CarolinaGirl]

That's what I thought, too, until some AC women in their 60s shared their experience. They said they'd never...experimented (trying to keep it family-friendly yet educational). Their theory was the virus transferred with front-to-back wiping. They decided girls should not "cross the streams" and keep the TP for each job totally separate.

Where does one learn wiping habits? Is this something parents teach? As apparently I can't remember nor do I have children. I'll be totally honest.. I have never wiped front to back.. and always wipe each area separately. Apparently this isn't the norm?
Can I ask what age you were diagnosed at?

[BLBGP]

Did you know you had HPV (via an abnormal pap) before you were diagnosed?

[Bugs-n-Frodo]

Congrats for surviving and more congrats for sharing your experience and knowledge. I do not have questions myself, but I am glad you are here to answer questions for others.

[jetsmom]

I followed your story on TOB and was impressed by both your bravery and openess about your cancer. Glad to hear you are doing well now (other than your lingering issues.)

[HighFlyinBey++]

Thank you all for your kind words.

Let's see if I can answer everyone's questions without forgetting anybody

Is anal squamous cell the same as any other squamous cell?

As far as my understanding goes, yes. I was quite confused at first as to how I got a skin cancer where the sun never shines.

Can I ask what age you were diagnosed at

Is this something that has anything to do with age? I would never ask you how old you are but does the HPV vaccine offer protection?

I'll be 42 in 8 days I was diagnosed at 38 which is quite young for AC. That said, the doctors told me it's showing up in younger people all the time.

AC is a slow-to-develop cancer. I was told it started probably 15 years before the tumor actually developed. Historically AC has been a disease associated with women in their 60s. Men get it, too, but at a lower rate than women and (AFAIK) in equal ration of gay vs. straight.

The HPV vaccine protects against only some of the virus strains out there, one of which is thought to cause AC. Not everyone who gets HPV will develop a cancer. Some people kick the virus like a normal cold. Others aren't so lucky.

Where does one learn wiping habits? Is this something parents teach?

I don't remember mine teaching me, but I was cursed with constant bladder infections as a little kid (stems from convincing myself that nobody else peed/pooped despite the fact that toilets are everywhere. WTH knows why I did that, but anyway...) One particular infection was caused by wiping fecal matter back to front, so ever since then, it's been front to back for me. Apparently you developed the best way all on your own!

Did you know you had HPV (via an abnormal pap) before you were diagnosed?

Nope. I never had an abnormal pap.