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.
If you would like to contact Dianne directly for support or to learn more about her story you can reach out to her at Dianne5@verizon.net.
Looking for someone to talk to about your anal cancer diagnosis? We are here to help. The Peer to Peer Support Program is a free service provided by the Anal Cancer Foundation that matches anal cancer thrivers (our word for survivors) and caregivers with thriver volunteers and caregiver volunteers.