Hi, my name is Dianne and my story all began in 2012 when I started having rectal bleeding. I went to see my GI doctor who said "It was nothing just hemorrhoids, all women who have given birth have these." Well, 2 months went by and I still had the bleeding. I convinced my GI Doctor to give me a colonoscopy even though I had my last one two years prior. Well, sure enough, they discovered that I had a small, 1/2 cm nodule which they removed and it came back positive for HPV Anal cancer.
I went to see a GI Surgeon and Oncologist who said that my cancer was so tiny, I could skip traditional treatment. I decided to proceed with the treatment just to make sure we got all the invisible cells. So, I started 6 weeks of radiation and Chemotherapy, the Nigro Protocol. It was grueling but, I got through it and life returned to my new normal as a cancer survivor. Over the next 4 happy years, I went in for my 3 month check ups with both my GI surgeon and oncologist. They reassured me that since my cancer was Stage 1 and so tiny I had a 98% chance of a complete recovery. During those 4 years, I was considered "low risk" and I never had another PET or CT scan. I did have a CT scan 3 months after completing treatment.
Back then, I often asked my doctors "how will I know if the cancer comes back?" They told me that almost all recurrences happen in the first two years and it would come back to the anal canal. Thus, I would be monitored every 3 month with anal exams. But, something in the back of my mind said, what if it comes back in lymph nodes or somewhere else? We would never know.
Well, at 4 and 1/2 years post treatment, I started having bad pelvic cramping. My doctor thought I had pelvic varicose veins. He sent me to a Pelvic Vein Specialist who ordered a MRI of the veins. He discovered that I had a large 6 cm nodule on my aortic bifurcation in my pre sacrum area and some nodules in my front pelvis area. I had a recurrence after 4 1/2 years. It wasn't fair. That is not what they promised me. My doctors had promised that I had a 98% chance of being cured. But, here I was, the 2% who had a recurrence. I was mad at the world, and my doctors who I felt mislead me and didn't understand anal cancer. BTW - I was the first anal cancer patient for my first oncologist.
I started 6 months of horrible chemo, Cisplatin and 5FU. About 1/2 of my cancer disappeared. My new oncologist recommended that I do Proton Radiation Treatment to eradicate the remaining cancer. I moved to Houston for a month to begin treatment at MDAnderson. It was twice a day radiation treatments plus chemo. I survived and returned home anxious for my first post treatment scan. To my surprise, I was NED. I enjoyed this status for the next 3 months, and then they discovered that I had new small nodules in my lung and the spot around my sacrum started growing again.
So, it was either go back to chemo or try Immunotherapy. I decided to use my immune system to fight this cancer instead of putting chemo in my body which made me feel horrible. I started an Immunotherapy Trial at the National Institutes of Health (NIH) last December. It has now been 4 months and I just had a scan that showed some of my cancer disappearing. I am so grateful that I have the opportunity to participate in this trial at NIH and possibly beat this cancer.
I feel great and my life is back to normal. I don't know what will happen next but, I live every day to the fullest and remain positive that I am here for the long haul. I have two daughters, ages 15 and 26 and I don't intend to leave this life any time soon.