My Story | Sheila R., Nova Scotia, Canada
I was diagnosed with stage 2 squamous cell carcinoma of the vagina in October 1998. I was 44 years old. I had been experiencing a non-irritating, non-odorous discharge for a couple of months prior to going to the doctor. I had undergone a complete hysterectomy seven years before for severe fibroids, so any kind of discharge was very unusual for me. The doctor examined me and told me that I had a yeast infection. He prescribed Diflucan®, and told me to renew the prescription if one dose did not cure the infection. Needless to say, I took the two doses and nothing happened. I went back to that doctor every month for three more visits. Each time, I was told that I had a yeast infection. I was then told to use some over-the-counter cremes etc. I diligently followed the doctor's advice to no avail.
In August of 1998, my husband suffered a profound stroke. Miraculously, he survived. By the time he returned home and things were beginning to settle down for him, I began to experience some vaginal bleeding. I went back to the doctor and begged to be seen by a gynecologist. I had an appointment set for a week later.
I saw the gynecologist on September 30. He examined me carefully and asked if I was experiencing any bowel trouble, or if I had ever been diagnosed with Crohn's Disease. I never had, so he remarked that since I was so young, he wouldn't want to think it was a malignancy. However, just to be sure, he needed to rule out a fistula from the bowel to the vagina. I underwent a gastrografin enema (similar to a barium enema) which proved to be negative. He then booked me for a biopsy.
I arrived at the local hospital via my next-door neighbour, as my husband had still not recovered from the stroke. My gynecologist arrived in the operating room looking a bit somber when he asked how I was doing. When I awoke from the procedure, the nurse told me the doctor would see me in ten days. My neighbour drove me home and I went to bed to sleep off the rest of the anesthetic.
That was October 26. It had been two days since my daughter's 13th birthday. Two days after that, on October 28, 1998, I took a call from the gynecologist's secretary asking me to come in to the office that day so the doctor could "discuss the results" with me. I was a little apprehensive, but drove myself over there. I thought that I probably had a little polyp or something. I never imagined that it would be anything serious.
When the doctor came into the room, he looked really solemn. He said, "Well, it's about as bad as it can get; it's cancer." He went on to tell me a little more, but I was so dumbfounded I didn't hear much. I remember he told me he had already spoken to a gynecologic oncologist in Halifax, and that I had an appointment for the next week. He also warned me to be prepared for major surgery, a radical vaginectomy, and possibly more. I remember asking, "My God, I have a thirteen-year-old daughter and a husband recovering from a massive stroke. What is the prognosis?" He simply shook his head and said he really didn't know. He explained that vaginal cancer is relatively rare, especially in younger women.
I did have enough presence of mind to ask for a photocopy of the pathology report, and was able to have my physician cousin 'translate' for me. The doctor also told me that if my husband wanted to call, he would explain everything to him. I remember getting into my van and driving toward home. My husband called me on my cell phone and asked how the appointment went, and I remember saying, "It's as bad as it can get." After that, I have no recollection of driving home.
The next thing I remember was arriving home where my husband was on the phone with my mom in British Columbia. She had called to see how I was feeling after my biopsy. When I broke the news to her, we both started to cry. She said she would be out on the first plane possible. My husband called the doctor who explained everything to him. Bless that gynecologist! He was wonderfully understanding and so kind and compassionate.
I went to see the gynecologic oncologist and was examined by both him as well as a radiation oncologist. When I expressed my fears about having to undergo a radical vaginectomy, they told me that, for now, they would just remove groin lymph nodes to see if the cancer had spread in order to plan my radiation treatments. He then went on to explain that there was no chemo treatment for this type of cancer and that it was usually treated with radiation. I had my surgery to remove my lymph nodes ten days later.
What an ordeal! I developed post-operative infections and required two months of having the area packed with FOUR YARDS of 1/2" saline-soaked gauze and then filled with a gel, which eventually healed it. I had to have a CT (computed tomography) scan of my abdomen and chest x-rays. The CT scan showed something on my liver. I went back for more tests; this time a liver scan showed that it was a benign hemangioma. I was probably born with it.
In the meantime, I began my radiation treatments. The radiation oncologist was a wonderful young man who was the most compassionate doctor I encountered throughout my entire "journey to Planet Cancer." He was so polite and kind, and extremely gentle. He always took the time to answer my many questions, never making me feel stupid for asking. I will always be grateful for this doctor being there for me.
After 25 external beam radiation treatments, I was booked for brachytherapy. I was to undergo a surgical implantation of a device to keep a cesium rod in place for three days or so. I underwent that surgery early in February of 1999.
I did suffer some side effects from the treatments. I had burnt skin and all my pubic hair fell out. Radiation left me feeling like a limp rag most of the time. However, I was fortunate to be able to utilize "The Lodge That Gives" in Halifax. The Cancer Society runs this wonderful lodge and it didn't cost me a cent to stay there. It was located right across the street from the hospital, so every day, I would get up, get dressed, slowly walk across the street, have my treatment, and slowly walk back. A two-minute walk took me 15- 20 minutes each day. I also suffered horrible lymphedema from the removal of the lymph nodes (which were all negative, thankfully). I wore compression hose diligently for about a year, but now I can wear regular support hose and the swelling seems to be well controlled. Sometimes I get pitting edema, but if I'm careful, wear the compression hose, put my feet up if there is swelling, and walk, walk, walk every day, it doesn't get too bad.
I returned to work five months to the day of my diagnosis. It took me a long time to recover my strength and energy. In fact, to this day, I still suffer fatigue. The radiation left me with some permanent reminders. Most of my pubic hair regrew, but I suffer terrible vaginal stenosis and dryness. There is a dark stain on my thighs where I was burned during the internal treatments. I also developed radiation proctitis that causes rectal bleeding from time to time. My legs continue to swell as I mentioned, but all in all, I'm so grateful to be alive that I feel very blessed. I know that many women are not as lucky as I was.
I hope that my story will help other woman who may be facing the same ordeal. I remember staying up late into the night when I was first diagnosed. I looked everywhere on the Internet for information. Some of the best cancer information I found was on the OncoLink web site. However, there's not a whole lot out there about vaginal cancer. I hope that EyesOnThePrize.org will inspire other women to come forward and tell their stories.
Soon, it will be three years since I finished the treatments. I still have to return to the cancer clinic every six months for follow up checkups. So far, everything is great. I feel good, am working full time, and my husband is more or less stable now. Life goes on, we are busy, but so happy to have each other.