May 24, 2004 - 6:14 am
I was diagnosed Apr 2003 with squamous cell carcinoma associated with a lesion right below my vagina, but the cancer spread to the anus. I was shocked since two doctors had told me it was just a skin tag (no biopsy), and didn't do anything. I had 3 surgeries (Apr, Jul & Aug) to remove the cancer including a 2" x 4" skin graft which has left a repulsive scar above my left knee (I was promised the skin would be harvested from my upper hip area, but guess what?). I was told that they obtained "clean margins" and wasn't given radiation or chemo - not even offered radiation or chemo - they were so confident. Now I read the excisional surgery I went through has is 95% effective, with the explanation of effectiveness being that it leaves only 5% of the cancer cells (hmmm, what good is leaving 5% of the cancer cells?) I went for my second post-surgery checkup and now the doctor wants me to get a colonoscopy (what? my anus is STILL SORE and they want to invade it?). Told him I wasn't due for a routine colonoscopy until this October when I turn 50, then found out he had requested my regular healthcare provider arrange for it, so that made me suspicious. In the meantime, I've developed itching/soreness/stinging in the area again so guess what's back, and I have the chronic fatigue I had the first time along with profuse sweating even when I'm sitting still. So, I cancelled the colonoscopy which was supposed to take place today. The gastroentrologist told me the cancer I had was a second cousin to the colon cancer that claimed my grandfater (he had a colostomy) - the good news just keeps on coming! I know what I've gone through is peanuts compared to everyone else, but I didn't want to go through the surgeries last year in the first place and only gave in under pressure from my husband. My last surgery was especially horrendus to me - had stitches removed around the anus without an anestetic, was told liquid diet then given ice chips for 5 days, was prescribed pain meds to which I was allergic and my husband didn't read the patient info before giving them to me after I got home. This probably sounds whiney to people who have been through a lot worse, but I just don't want to deal with this anymore and have told my family that, no matter what happens, I'm not going back again to be tortured being a further medical experiment when there is no 100% guarantee involved. I feel the medical system had their shot to do whatever was required last year, I fought to get over that and tried to get back to a normal life, and I didn't sign up for what's left of my lifetime with having to deal with this stuff. I'm especially upset when I read the stats are so poor as far as the survival rate (only 70-80%). My husband thinks I should go through all of this "for me", but "me" doesn't want me to have to endure all this pain again just for "a chance", and not a good chance at that. As a side note, he's always told me that if he was diagnosed with a terminal disease, he'd use the shotgun method, but there seems to be a double standard for me. He tells me so many people depend on me that it's just about a duty to endure this, but surviving to continue serving someone else just isn't a reason to me for me to keep going. I know this is the Cancer Survivors Network, but has anyone else just said that enough is enough and drawn the line?