Edited 7/5/2009 to Add: Please do not write to me about this post! Please take it’s importance and share it with your friends and family and community. Please let me return to being the hermit I am so fond of being, Please.
I wasn’t going to post anything about this but the more I read the madder I get.
I am going to force myself to write all of this. It is almost impossible to do but it needs to be done. I think I’ve written most of it anyway.
Farrah Fawcett lost her life to the rare cancer, anal squamous cell cancer that I had. The reports about her death list the causes of this cancer. I don’t know if Farrah had HPV, (Human Papillomavirus Virus) or had anal sex or multiple partners. We are not allowed that information. But those are the main “causes” being touted.
I didn’t have those. I did have major stomach pain, constipation/diarrhea swings, a swelling stomach, no energy for a long time, susceptibility to illness. And a tumor growing and spreading, for some period of years. I had a colonoscopy 4 years prior that didn’t reveal this tumor but now it was there.
One lady described her colo-rectal cancer as “a flu I couldn’t get rid of.” Anal cancer is not a colo-rectal cancer but there isn’t yet a separate class for it so that’s how mine was reported to the insurance carrier.
Suppressed immune system is also a cause. If I would pick a “cause” I’d say it is stress. I don’t know why my immune system has been weak but it is and has been for years. I think I just had too much stress in my life, throughout my life.
Until recently this cancer has mostly been tracked through the Veterans administration with it’s male population who smoke and have had anal sex. So therefore smoking is a cause. The main studies are from the 1970’s.
Mostly men are diagnosed with this cancer in the under 50 age groups, but after 50 more women are diagnosed with it than men. 2008 stats say that there were 5070 cases diagnosed. There were only 5000 cases diagnosed in 2004 when I was desperately researching this cancer online in 2007. At least they are updating the stats.
Was my cancer caused by smoking? I don’t know but I suspect that smoking is blamed for just about everything that doctors have no scientific explanation for so I look askance at this “causation”.
I had an HPV test just to prove to my gastro-intestinal doc that he couldn’t just write it off to wild sexual behavior and dismiss me out of hand. Didn’t help, he dismissed me anyway.
Perhaps anal fissures allowed the tumor to grow.
Now the popular thought among doctors is that certain cancers are in “families” and that anal cancer is not “related” to colon cancer but is related to cervical cancer, landing anal cancer in the HPV ghetto. And you can get a vaccination for that so get your daughters to the doctor for that vaccine today!
I don’t buy that. An anal exam annually by an educated and alert doctor is much more important!
Doctors are not educated about this cancer. My gastro-intestinal doctor, a year after I had been declared tumor free asked me, what do you want me to do now? So I called my radiation oncologist to ask him and he didn’t know. He got out the textbook to read to me over the phone. We’re following the official recommendations, but he didn’t know prior to my phone call.
And I got a new gastro doc.
I had the tumor for a long time before any diagnosis. It was 4 cm when it was found. It had spread throughout my pelvic lymph system. It didn’t make it to my lungs (so far as we know) or my liver, thank goodness, or I’d probably be visiting with Farrah as another Angel right now. I did manage to get myself into the 40% who make it out alive. The survival rate before Farrah’s death was 60% for my stage 3, wonder how that drop happened??? Who knows. The information was so poor. It’s a tiny bit better now.
Any annual Pap smears I had included a swift anal exam but without the doctor being sensitive to the possibility of an anal tumor how did she know what she was feeling was not a hemorrhoid? She didn’t.
Hemorrhoids “masked” my symptoms and my family doctor just accepted the bleeding, suggesting Preparation H, Phillips Milk of Magnesia and Imodium AD.
The treatment for this cancer is brutal, more brutal than breast cancer, more brutal than prostrate cancer, more brutal than colon cancer. It’s not sexy, it’s horrible. It burns everything below the waist, shutting the vagina almost completely, making eliminating any wastes a test of how much pain can be endured, causing yeast infections to add to the insanely horrible half sleep existence one must suffer through. I either stood or laid down for 5 months, I couldn’t sit down. Every bit of skin between my legs peeled off, yes, including the most sensitive parts. A burn cream and a sitz bath were the only salves. And massive amounts of mind bending, addictive drugs.
And of course the radiation kills off all hormone action from the ovaries so your skin sags and wrinkles unbelievably quickly. The body changes are totally overwhelming. Incontinence is a daily surprise. Will I or won’t I? You just never know. Even now 2 years alter.
This is a seriously awful cancer and very few of you reading this will ever have a reasons to follow my advice but I’m going to say it anyway. Ladies: do not allow your doctors to neglect this simple digital examination. Ever. Be sure to have a colonoscopy every 5 years. Pay attention to signs of hemorrhoids. Demand that an anal tumor be ruled out completely.
Need info about this cancer? There is one place you can go online where there are educated people who can help: http://health.groups.yahoo.com/group/anal-cancer. I wish I had found this group 2 years ago! I had to learn about everything all on my own. I hope you never have to use this resource nor ever come read this post again (if you’ve made it this far)
I’m going to post this before I get frightened about my public disclosure and discussion of the particulars and I delete it.
And I’ll return you to the coverage of Michael Jackson’s untimely death.
But for us ladies, I believe that Farrah Fawcett’s passing is much more important!