My Story | Carol F., Pennsylvania, USA
The telephone rang at 10:00 P.M. on a Monday night in early October, 1997 at my Pennsylvania home. When I picked it up, it took me by surprise to hear the voice of my gynecologist. I gave a warm, but quizzical "Hello."
Her voice responded quickly, resolutely, and solemnly, "Carol, I'm sorry to call so late, but I was unable to reach you over the weekend, and I just walked in the house from the airport. I've been at an all-day medical conference in Seattle. I'm afraid I have some bad news for you. The LEEP (Loop Electrosurgical Excision Procedure) pathology results are back, and they indicate that you have a fairly rare form of cancer, an invasive adenocarcinoma, high up in the cervix."
Immediately, I reached for a pencil and paper. "How do you spell that?" I asked. Writing it down, I was, at that point, in a dumbfounded state, but I heard her say that I would need a gynecological oncologist (GYN-ONC), and that "staging" would be required.
I asked, "When you say invasive, what does that mean?" Her reply simply stunned me. "It could be anywhere...in your pelvic wall, your rectum, your bladder...it's hard to say until they do the staging."
In shock, I asked, "Could it be anywhere else?"
"Probably not," she said, "this type of cancer usually invades the space around it. It's less likely to have drifted to some distant point. I didn't want to give you the bad news this way," she apologized, "I don't have to do this very often. I was thinking of coming by your place this weekend, but I was uncertain that it was the right thing to do. You need to see a specialist right away."
And so, that evening, I had involuntarily joined a new society, and gained a new identity. In an instant, and with just a few words, I had become a Cancer Survivor.
Cancer was not new to me. At the age of eight, in 1950, I saw my paternal aunt Alice, age 37, mother of three, including an eight-month-old, lose her battle against melanoma. I remember so well my parents speaking in hushed tones that my aunt would die of "Cancer." The word sounded evil. I knew it was a bad thing to have "Cancer." I knew it killed people - old, young, rich, poor, famous, and infamous. It killed without conscience. I didn't know, at the age of eight, what an incredible part "Cancer" would eventually play in my life.
When I was twelve, in 1954, a second paternal aunt and godmother, Florence, age 55, died of brain cancer, and when I was 16, in 1958, my mother, then age 45, was diagnosed with cancer of the ovary (see her story at: http://www.eyesontheprize.org/stories/margaret.html). She's still surviving today, in the year 2000, at age 87. The loss of two aunts was sorrowful, but the potential loss of my mother was devastating. "Cancer" had broken into the security of our home. I was one of only two children, and the only daughter, so Mom and I were more than good friends. I remember asking myself, "What am I going to do if she dies?" I couldn't come up with an answer to that question as a sixteen-year-old. Fortunately, she didn't die, but, with my previous experience to go on, I believed that she, too, would be another victim soon. Then, in 1960, when I was 18, Mom had another primary malignancy - this time of the uterus...and I was absolutely sure I'd lose her soon. I believed no one survived two bouts with cancer - especially in the 1950's, and early 1960's. Fortunately, I was wrong.
I had my own first personal scare with cancer in 1962 at the age of 20. I had a miscarriage after a three-month pregnancy. The doctor termed it a hydatidaform mole (molar pregnancy). This meant little to me at the time, except the loss of my baby...but, when he explained to me that a small percentage of women with this type of "tumorous placenta" go on to develop chorionepithelioma - a rare and swiftly fatal type of cancer, he got my attention fast. He said, "If we got it really early," with some new chemo treatments available, "you'd have a chance." I remember going home and looking in the dictionary to see if I could find something about it. But, there was nothing. I went for monthly blood tests for a year after that diagnosis, and anxiously waited each month for the "life and death" results. I was advised not to get pregnant for at least a year. Fortunately, I was not one of the "small percentage". I had dodged my first bullet.
Then, I had another scare at age 21 in 1963. In the shower, I discovered a lump in my left breast, upper right quadrant. I literally raced to my GYN who promptly sent me to a surgeon. The surgeon felt I needed a surgical biopsy. Terrified that it might finally be my turn to have an encounter with the killer, "Cancer", I went "under the knife" not knowing whether I would wake up with one breast, or two. At that time, they didn't do lumpectomies, or allow you to wake up after surgery to discuss your treatment alternatives. Once again, I was lucky, the tumor was benign, and I still wear the "survival scar" from that surgery with gratitude. And, I had dodged a second bullet.
Another shock came in October of 1964, when I was 22. My mother called to tell me that we were facing cancer again, only this time it was not hers. They had diagnosed my 54-year-old father with a prostate malignancy which had metastasized to the spine. There was no treatment, and there was no hope. He left us after a pain-filled nine months - one month and one day before his 55th birthday. My newborn daughter was only six weeks old at the time, and I am grateful that I could share her with him for at least that last few weeks of his life. That particular timing - one month and one day before his birthday - would come back to haunt me later, as you will see, in my own bout with cancer.
In 1974, I noticed a tiny pencil-sized spot at the corner of my eye which was constantly bleeding, forming a scab, then bleeding again. I immediately went to a dermatologist...I was 33. The biopsy determined a malignancy, but the biopsy had "gotten it all." I was not concerned, as I knew how treatable basal cell carcinomas are. I didn't know that I would have it return twice before they finally got rid of it through a Mohs procedure in 1978. There was a hole in my face the size of a dime. I cried, but the cancer was, hopefully, finally gone. Over time, the scar tissue filled the hole, and today it is hardly noticeable...but, at that time, I was very upset with the disfiguring nature of the surgery. This was the first bullet I had failed to dodge, but I was only "wounded".
After the death of my father in 1964, I helped my mother through two more cancer surgeries for primary colon cancers in 1978 and 1983. Then, in 1991, another close relative, my maternal cousin, Janann, aged 62, was also diagnosed with colon cancer. Despite her training as a highly skilled surgical nurse, she had ignored early symptoms, and died within six months - it was too far advanced for treatment. Cancer had now encroached upon every decade of my life.
In some ways, cancer had become an inescapable and evil life companion, and I had little doubt that, given my family history, I was at high risk for becoming a victim myself. All my doctors along the way, suggested that I was at high risk. They advised all the usual preventive measures: get regular check-ups, have an annual PAP smear, an annual mammogram, an annual chest x-ray, don't smoke, eat a low fat diet, exercise, and keep a positive, happy outlook on life. And I did all of those things. I was in my 50's, and I had five beautiful, grown daughters and a wonderful husband, and life was not just good, it was great.
In 1994, at my annual GYN check-up, I had a questionable PAP smear, followed by a colposcopy which indicated mild dysplasia. I was given an antibiotic cream to use before my next PAP smear, which was scheduled in six months. My GYN advised that sometimes mild glandular dysplasia can result from an infection, and that the antibiotic cream would help us get a "clear" sample. That six-month follow-up PAP was AOK. Just to be absolutely sure, I was also given an pelvic ultrasound which only indicated a hydrocele. There were three more years of negative PAPS. I had dodged another bullet.
But the health horizon clouded for me at age 55. In June of 1997, my annual PAP was taken by a very young technician. I remember very distinctly that this PAP was different from any other I had experienced. It really, really, hurt when the speculum was opened. She, I remember, remarked disparagingly to me, "PAP smears aren't painful. I don't know why you're so uncomfortable." I was perplexed as to the pain, but I dismissed it, and attributed it to her inexperience. When the results came back, for a second time, they indicated AGUS (Atypical Glandular Cells of Undetermined Significance), with a note that said, "Cannot rule out carcinoma," and it was suggested that a three-month follow-up PAP be done in September, 1997. Unhesitatingly, I complied.
The September, 1997 PAP was the third bad smear, the second in three months, so the GYN called me at home. She wanted to do another colposcopy. I remember asking, "Is this really necessary? I'm so busy, I hate to take the time to come in. You remember the last one I had showed nothing." She replied, "Carol, if I didn't believe it was necessary, I wouldn't be calling you." I trusted her judgment, and so I complied.
During the uncomfortable and somewhat painful colposcopy in her office, I remember her saying, "I'm taking a sample at two o'clock." which I understood to mean the location on the cervix. As she took the sample, I lurched on the table, and, inadvertently, kicked over the formaldehyde solution with my foot. The examination room reeked of the foul-smelling chemical. My doctor sweetly and patiently said, "Get dressed, Carol, and let's talk in my office."
In her office, she said she felt she could not get a good enough "look" at the cervix to suit her. I guess my lurching had made it fairly difficult, and she suggested an out-patient LEEP. A LEEP involves using an electrified wire which removes the bad section of the cervix. She said to me that if the margins of the LEEP were clear, the procedure would be considered curative of the glandular dysplasia I was experiencing, but if the margins were affected, she was going to recommend a hysterectomy. I agreed that I did not need to have bad cells in the cervix which could ultimately become malignant. I was in my 50's and had five grown daughters. I certainly wasn't looking for more babies...and while I didn't relish the idea of a hysterectomy, I totally understood the dangers associated with dysplasia which could lead to cancer.
The LEEP was done in the hospital as an out-patient procedure. I had IV sedation, which, given my previous doctor's office experiences, was most welcome. Just before I was given the IV, I remember asking the doctor, "What are the chances that this biopsy will show a malignancy?" I will never forget her single-word response. Confidently, she said, "Remote." The procedure itself was a painless nonevent. I went back to work the next day, and never gave the results a second thought. At that point, I believed that the results would simply indicate whether I needed to have a hysterectomy or not. The word "remote" had removed all post-test anxiety. I was so busy over the weekend, I didn't even reflect on the procedure or the results.
The call from my GYN that Monday night in October, 1997 had come as a shock, as I had put out of my mind the idea that the LEEP performed the preceding week would indicate cancer. But, now, it was a reality that the evil companion, Cancer, was taking MY hand this time. I was determined to do all that was necessary to confront the demon. The bullet had hit me again, this time in a more dangerous place, but I was going to do everything possible to prevent it from taking my life.
I consulted with two GYN-ONCs. The first one, an older man, told me that while invasive, he thought it was a very early malignant tumor because it did not appear to be "fastened" - in other words, it moved. He also explained that a radical hysterectomy would be required. He said that he would do a node dissection at the time of surgery, and that if they were clear, he might even be able to do a radical hysterectomy vaginally. The recovery time from that procedure would be far easier than an abdominal hysterectomy. However, he also said that the radical hysterectomy could potentially leave me with long-term bladder problems...perhaps even requiring self-catheterization. The prospects of that were not pleasant. This initial doctor did not feel the need for any preliminary MRI or CT scan to determine the extent of the invasion.
I called a friend of mine who is a prominent breast cancer surgeon, and told him of my diagnosis, and about my visit to the first GYN-ONC. He recommended that I get a second opinion from a GYN-ONC that he had worked with. He said, "Carol, ALWAYS, get two opinions on a surgery this serious."
After the GYN-ONC visit, I also accidentally met up with a customer of ours (who is a urologist) in the aisle of the local grocery store. I took this chance meeting as a good omen, as I had never, ever, accidentally bumped into him before. In the check out line, I told him about my recent diagnosis. "What do I do?" I asked him. He replied that there was absolutely no reason to believe that I would have urological difficulties under the hands of a competent surgeon. I asked, "How do you judge competence?" He replied that I should find a surgeon who had done at least 250 radical hysterectomies before going under his knife.
So, when I went to see a new doctor for the second opinion, I was somewhat concerned that he appeared so young. However, I immediately felt very comfortable with this surgeon. He did his examination as gently as possible, and drew a diagram explaining the surgery. He also said he would want a baseline MRI and wanted to see my pathology report himself. He said he did not rely solely on the pathologist's interpretation. I was comforted by that thoroughness. He said it was not necessary to remove my ovaries but, given my mother's ovarian malignancy, I said, "Take them too."
I asked him, "How many of these rad hysts have you done?" He looked at me quizzically, "Can I count experiences as a resident and intern?" I said, "Sure." He thought a moment, and then replied, "Approximately 200." I said, "That's good...I was told by another surgeon that you needed at least 250, but 200 is okay with me." And, he laughed, and my husband and I laughed...the first laugh that we had had in over a week.
That visit was more reassuring. This GYN-ONC also felt that this was likely to be an early malignancy. We set a surgery date of October 15 at 7:00 A.M. I was terrified...I couldn't sleep, and I couldn't eat. My surgeon would have taken me earlier, seeing my emotional state, but he said that the October 15 date would be better, as it would allow the LEEP to heal, which would help prevent blood loss.
I called my regular GYN back, and told her of my decision about the new GYN-ONC and of the surgery date. I also asked her for two more things: a prescription for an anxiety-reducing tranquilizer, and a sleeping pill. Despite the fact that I had never taken either before, I was grateful that she said, "No problem." She gave me Xanax and Ambien, and they were very, very helpful in that pre-surgical two-week waiting period. The only good thing about the wait, was that I had absolutely no appetite. I lost 17 pounds...and I was only on the upper end of my weight range to begin with. So I looked great. (There's got to be some compensation!)
The results of the MRI were negative. That was very reassuring. But what concerned me most was my realization that the surgery date, October 15th, was exactly one month and one day before my birthday. My father had died one day and one month before his birthday. I became convinced that I had to change the surgery date.
I spoke to an old friend of mine who is quite a religious person, and told him about the concern I had about the surgery date. He said, "Carol, don't you see that that surgery date is a good omen?" When I asked why, he replied, "Your father is sending you a message that you are going to be just fine." With a feeling of sudden surprise at this new perspective, I said, "You know, I think you're right. I'm going to keep that date. Dad will be with me, and I'm going to be okay."
And, I was okay. The six-hour surgery, which involved removal of 20+ nodes, was flawless. Very little blood loss. I had a general anesthetic, and a spinal for morphine administration. The first hour or so after surgery, I was a bit nauseous, but they gave me a couple of shots, which quieted that problem. Coming out of the recovery room, my husband and two of my daughters gave me the "thumbs up"...several suspicious nodes which were dissected during the surgery had come back clear. The rest of the results would be coming in a few days...but the prognosis was excellent. I was ecstatic, and grateful for my good fortune of having a thorough GYN, and that I had inadvertently kicked over the formaldehyde. My GYN-ONC told me that the cervical tumor was so high up, it would be undetected by a PAP smear...and that only a LEEP could have found it. He also said that it was so high up, that it could almost be called uterine.
The post surgical pain was quite bearable...and the pulsating stockings on my legs were actually somewhat comforting. They felt good to me...which the nurses tell me is unusual. Most patients don't like them. After three days in the hospital, I went home with a Foley catheter. A painless nuisance, it was removed within the week. My recovery was very routine, and on December 27th, eight weeks later, I was dancing at my daughter's wedding. I never cried at a wedding so much as I did at that one. Sheer joy that I was here to be a part of the event, and knowing how very precious life is.
I continued to be vigilant. In December of 1998, one year after the surgery, I developed some fairly regular nightly pelvic pain. My doctor felt a suspicious nodule at the vaginal "cuff". He had me go for a series of tests...an upper and lower abdominal CT scan, a chest x-ray, a bone scan, and a barium enema. He also recommended a needle biopsy of the nodule. All the tests were normal. Under an IV sedation, he took a biopsy. It was benign. And, once more, I thanked God, the bullet had missed.
The most recent scare, in June 2000, was an enlarged node in my neck. I learned from my research, that adenocarcinoma can travel to the neck nodes. I was terrified. I found the swelling in the middle of the night, and I couldn't get back to sleep. I got up early that morning, and went into my walk-in closet. Turning on the light, I glanced at the floor where I saw a small silver ruler-like object. Picking it up, I read the words "GE Conduit." I was uncertain what it was. When my husband got up that morning, before I told him about the node in my neck, I showed him the object and asked him what it was. He said, "Carol, don't you remember? You gave that to me a couple of years ago. It belonged to your Father."
"Did you drop it on the floor in the closet? How did it get there?" I asked. My husband replied, "I don't know, Carol, I haven't seen that little ruler for a long time."
"Oh, thank God, Larry," I replied, "my dad is sending me another message...he's telling me not to worry...I know I'm going to be all right." And I shared my news about the neck nodes with my husband. Naturally, he was more than a little concerned.
Immediately I made an appointment with my GP. After the exam and some blood tests, it was determined that the swollen nodes were from "cat scratch disease." We had recently adopted Ben and Jerry, two small kittens, from the SPCA, and I remembered that one had inadvertently jumped on me one night, resulting in a scratch.
And Dad was right, I was fine...and my faith, which at times has been weak, is growing stronger. And, now I watch for subtle signals from my body, and from Dad, and I continue to be vigilant, watching for the next bullet, and hoping that I'll be swift enough to dodge it.