Hello All.....I'm a 55 year old grandma of 10 grandchildren and I personally have 3 children, 2 girls and 1 boy. I'm was dx in 6/ 2004, at the age of 47, with anal cancer, squamous cell carcinoma to be exact. I was staged at lllb, but could of just as easily been staged at lV, because of location and size and node involvement. When I was dx, I was one of two people in my entire state and there wasn't much if any information about this ca. I now advocate about the need to get info out on this rare form of cancer and I'm a buddy for newly dx patients and I volunteer my time with many different foundations and organizations, all in the name of anal cancer.
When I was dx in 2004, I was in the hospital, as I went to see if I could possibly get a colonoscopy as I was having problems in the bowel area, no blood and not really any pain, I just couldn't go! I had seen my ob/gyn 6 months prior to my discovery and according to her everything was fine, the only thing she told me was she couldn't find my cervix that day, but if the tests came back suspicious, I would have to go see a specialist, and they didn't, they came back normal. In 01/2004, I changed doctors as I was continuing to have the same problems where I couldn't go, that doctor couldn't do another pap (insurance reasons) within 6 months and put me on stool softners and a diet. Neither of these things seemed to help, so i went back and told him, he suggested I get a colonoscopy, so I called and made an appointment, but it wasn't till 7/ 2004. I started to lose weight and since I couldn't get in til 7/2004, I decided to go to the er and see if I could get a emergency one, so on 5/31/04 I went to the er of my local hospital and by the time the er doc performed a DRE, I was admitted and the string of tests started. That's when I found out I had anal cancer, my tumor was the size of a small lemon/ golf ball and it was on the anal verge on the left side. I couldn't even have a colonoscopy like we know, because the tumor was in the way, so i had to be put under, given botox injections to hopefully relax the muscles enough to have a colonoscopy. When I was told by the colon/ rectal surgeon what was happening, I was told,"Good thing I came in on my own, if I had waited till that appointment in July, I would of been dead."
I started chemo within 3 weeks of being dismissed from the hospital, the first week I had my port installed, the second week I went to get my markers for radiation and was told at that time, I could not start radiation until I had at least 5 months of chemo, as the radition would of swelled the tumor even more and blocked everything. My oncologist, primary, and colon/rectal surgeon researched together to find the apporiate treatment plan for me, because this cancer was so rare. Just dandy...hehehehehe So..I started on 5-FU weekly in the fanny pack, (get connected on Monday- get unconnected on Friday), every 3 weeks and on Wednesday's i would be in the chemo room for 3 hours, getting my drip of Cisplatin. I lost all my hair, I lost close to 100 lbs, as I couldn't eat, everything tasted like metal, was constantly nausauated and sleep most of the time, I couldn't even walk much or do anything. that's when I noticed that my feet were getting numb and told my oncologist and he told me, sounds like neuropathy is setting in.. After finishing up my 5th month of chemo, I started radiation everyday for the next 7 weeks and finished my 6th month of chemo while going through radiation. After going through radiation for 4 weeks, I had to stop all treatment, as I had second and third degree burns throughout my vaginia and pelvic walls and had to let that heal completely before I could start again with treatment. No one told me to go with a full bladder to rad treatments, no one told me to make sure to wipe off all the salve on my burns, no one told me about dialtors, and no one told me about anything concerning this cancer, because they didn't know. How could I expect the doctors to tell me if they didn't know themselves, so I was basically a guinea pig. After I finally finished all treatments in 02/2005, i went in for my CAT and MRI to see what these treatments did to the tumor, it wasn't much. The treatments shrunk the tumor only 1.5 cm and in March of 2005, I was scheduled to have surgery to remove the rest of the tumor, and the nodes that were involved. I had the surgery and it took me nearly 6 months to be about as normal as I was going to be. 6 months to recover. I ended up with severe neuropathy, I had to learn how to walk, drive, how to keep my balance all over again. I even had to learn how to eat food again. I live basically on Jello and nutrritionl drinks. In 10/2006, I had to have more surgery because of the severe damage the radiation did to my internal organs. I had to have 8-10 inches of my small bowel removed and my appenidx, because the small intestines had attached themselves to my pelvic wall, squeezing the life out of my other organs and were so totally messed up that I almost died again. now that's twice I've beaten death.
Currently, I'm NED, but I have many, many after effects from the chemo and radiation, I have a eating disorder, I'm lactose intolerant, I also can't have gluten, I'm still drinking those nutritional drinks everyday, I live on anti-diarrheal pills, just so I can eat, I have no feeling in both feet from the ankles down,I have to wear big girl pull-ups, I have anal and vaginal stenosis, I'm a born again virgin,I can't have intercourse at all, I have tinnitus, but I don't have a colosomy bag, as i'm not a candidate anymore. Even though my new normal is completely different then what it use to be, I'm content. I feel my postitive energy and silly self got me through this journey and I made it through and ended up NED on the other side, when I should of died at least twice.