At my annual gynecologist visit, my new doctor said there was a small area of irregular cells of which she would like to take a sample to send to the lab. She was not alarmed and reminded me that I had never had a history of any problems. “This might be nothing to worry about. Either way, I’ll be in touch” she said.
At work, two days later, I picked up the phone to hear my doctor say. “You’ve got cancer. You’ll need to be admitted to the hospital in two days for surgery. I can recommend a specialist for you.” If she said anything else I didn’t hear her. Because of the shocking news, my mind heard cancer, surgery, two days and nothing else.
I hung up. My brain was numb. I called my husband to meet me halfway between his office and mine. When he arrived, I told him that the doctor called. “I have cancer. It’s going to require surgery in two days.” He asked questions. “What kind of cancer? Why operate so soon? Who is going to do the surgery?” I didn’t know the answers to any of his questions.
Together, we called my doctor and asked for more information. She said “Vulvar cancer. To diagnose the stage you’re in, how advanced it is, and how far it has spread throughout your body, requires surgery. I know a world-renowned expert in this area. I have made an appointment for you tomorrow with him. He will be able to discuss your treatment plan then. I am so sorry.”
We researched his name on the internet and found his experience to be extensive in “radical and ultraradical surgery for … gynecologic cancers (cervix, endometrium, ovary, vulva, vagina).”
Reading about vulvar cancer on the internet was frightening. I was too young to be having this type cancer. It predominately occurred in women after menopause who were senior citizens diagnosed around age 68. I was in my mid- 40s. There was a 50% occurrence of death. Our level of anxiety went from shock to dread. We had two children under the age of 12. I wasn’t prepared this soon to deal with the idea of death and leaving my husband to raise our son and daughter alone.
At the specialist’s office, he quickly sketched diagrams and spoke gruffly explaining the probability that he would perform surgery that would include the lymph nodes in one leg as well as the vulvar and surrounding tissue including the perineum, the tissue between the vagina and the anus. I would not have a say in the procedure. He would use his years of experience and best judgment as a specialist in genealogical cancers to proceed as he uncovered the cancer. After effects might include radiation and chemotherapy, as needed. I might have circulation problems in my leg after the surgery for an uncertain period of time. If the cancer had spread any further he would proceed to the lymph nodes in my other leg. Further surgery was dependent on what he found once the initial surgery started. He and my doctor had arranged surgery the next morning. I was not to eat or drink after midnight.
We left crying and shaking, holding hands, unable to look each other in the eyes. After we got to the car, my husband suggested we get in touch with our friend, a registered nurse, to get her ideas and opinions. She said she knew nothing about vulvar cancer but she would make some calls and get back to us. When she called she was confident that we should skip the sudden surgery and get a second opinion. She had the name of a local oncologist gynecologist who was recommended by a plastic surgeon and another nurse she knew. “Get another opinion just to make sure, if nothing else, that you’re doing the right thing.” she said.
We drove home in silence, each thinking what this might mean. We must call right away to cancel the surgery. That meant delaying a procedure that would reveal the extent of the cancer and start the first step in a treatment program. If this oncologist gynecologist said the same thing would we have lost precious time in treating the cancer? We called the recommended doctor’s office and explained our dilemma to his nurse. She called back in 15 minutes saying he would make time to see us tomorrow morning if we could be there when they opened at 7 o’clock.
At 6:45 the next morning we stood outside the doctor’s locked door waiting to be admitted. When the doctor arrived he examined me, and then invited us into his office. “I would recommend a more conservative approach to the surgery. Let’s take the least amount of tissue, have it examined in the lab to see if the margins around the cancer are clear. Then if more is needed, we can proceed.” He said.
” I estimate that a section of the vulva about 2 inches long and one half an inches deep would be excised during the first operation.”
We sighed, taking our first complete breath since the news. We both burst into tears unable to speak but each of us was grinning ear to ear. This was a plan that made more sense, gave us time to wrap our minds around the diagnosis and allowed us a say in how far and when the surgery would proceed. We knew this was the way to go.
We arranged to have the plastic surgeon and this doctor be in the operating room together so they could minimize the damage to the vulva and still remove all necessary, cancerous tissue. In other words, we wanted all the cancer gone but didn’t want me to be any more disfigured than possible given the sensitivity of the vulva during sex.
The procedure took about half an hour including the evaluation of the sample in the lab. The surgeon removed a wider area in the second step to make sure the margins were clear of cancerous cells. The plastic surgeon sutured and after a very short recovery period let me go home. Follow up visits were frequent. First weekly, then monthly and later extended to every six months when the area revealed no recurrence or suspicious cells. Now, I visit the oncologist gynecologist every year to have an exam. Four years later there haven’t been any additional problems. The current estimated success rate of a vulvar cancer survivor who has no recurrence is 92% after five years.
More information on symptoms, diagnosis, risk factors, and treatment is available from the National Institute of Health.