My Story | Leslie S., Indiana, USA
I was diagnosed at age 45 with squamous cell/blue cell cervical cancer. My original diagnosis was late stage 1.
I had experienced bleeding beginning in June 1997. It began at the time my period would normally have started that month, but did not stop. In early August, I saw my obstetrician-gynecologist (OB-GYN) for a thorough exam, pelvic and Pap, and began hormone therapy. The bleeding continued, so we did further tests and found fibroids that we continued to treat with hormones throughout the fall of 1997 - with no success.
At the beginning of December, I called my OB-GYN and told her that we HAD to find a successful treatment. She suggested another exam, another Pap, and perhaps a D&C (dilation and curettage) to stop the bleeding. But when she examined me, she saw a lesion, took a biopsy, and, in three days, we knew it was squamous cell/blue cell carcinoma and that it had NOT been there in August.
I don't think one ever forgets the day of "The Diagnosis". Although I had warned my husband what I was being tested for, when I got home from the exam, telling him the result was almost impossible. Within four days of my diagnosis, I was being seen by a gynecological oncologist (GYN-ONC) who sent me immediately to a radiation therapist (literally across the street).
Since radiology testing indicated I was still a stage 1, we determined that the treatment regime would be aggressive. The cancer had almost progressed to a stage 2 as it was growing so rapidly, but since I was still a stage 1, the focus was on curing me. The odds were 70% in my favor that aggressive treatment would work.
We settled on five weeks of daily (Monday - Friday) external radiation with chemotherapy (which was at the time thought to make the radiation more effective and which is now standard treatment!). They were great doctors, and were as good as their word in taking the aggressive approach.
We started within three weeks of The Diagnosis. After five weeks of external radiation, I had an in-patient internal radiation treatment involving an implant (under general anesthetic) and 24 to 72 hours of absolute bed rest and liquid diet, lying in a lead-lined hospital room with limited visiting. (Yes, they do check your belongings with a Geiger counter before you are allowed to leave.) Happily, they keep you pretty doped up since it is not a pain-free few days. When they did the implant, they found that I was actually a stage 2. Nevertheless, we kept to our aggressive treatment program.
After the in-patient stay, I had four weeks to "recover," then, in March 1998, I had a radical hysterectomy and removal of lymph nodes. I had complications from the surgery and the treatments including drug allergies, tape allergies, cracked teeth (four crowns!!!), lymphedema and nerve damage in the left leg, not to mention permanent damage to my gut. I also developed a surgical wound infection that resulted in re-opening the incision and allowing it to heal without stitching it closed. It took from late March until August for the incision to close.
The lymphedema began in my leg eight weeks after surgery. In diagnosing it, I had CT (computed tomography) scans of my abdomen that showed two small growths on my lungs. They were so small that biopsy wasn't possible, so I had CT scans every six weeks until October when they were found to be malignant. I had a wedge resection of the lower lobe of the left lung in November 1998. The pathology studies showed both nodules were metastases of the cervical cancer, so I was suddenly stage 4, with a five-year survival rate of 20% or less.
I cannot describe the shock of that second Diagnosis. I went from potential cure to odds of four-to-one-against my surviving five years. By that time, I had found the Wellness Community, a non-profit organization that exists to provide support groups for cancer patients and survivors and their families. My Wellness Group and my wonderful, wonderful husband and family supported me through the shift in my universe.
For those of you who are facing this, you should know that I am writing this in April 2002, and odds or no odds, I am clinically and radiologically disease free. This December, I will be five years out from The Diagnosis. So far I have beaten the odds and so can you. Whatever the odds you are given, remember that someone has to be in the 5% or 2 % or 20% who survive and it might as well be you.
I continue to work full time as an in-house corporate attorney - I was back full time in February 1999 and I am also back working in my garden (flowers and vegetables both). I have come to understand that whatever I called 'normal' before The Diagnosis will be a different 'normal' for the rest of my life. Try to find a Wellness Community near you if you can, or read Dancing in Limbo (available from the EOTP bookstore), a wonderful book about life after cancer written by two cancer survivors (Glenna Halvorson-Boyd and Lisa K. Hunter) for all of us.
In my Wellness Community, the many brave survivors there told those of us just joining, "You will be going through Hell, but you will meet some wonderful people there with you." They were right. After The Diagnosis, you may never see a doctor again without that cold fear in your heart, and you may find it hard to be serious about saving for retirement, but - you CAN be more alive to the joy of everyday life and the love of your family and friends.