My Story | Katie, California, USA
In early summer, 1995, I noticed blood after my husband and I made love. I think that was the first time I suspected something was wrong, but I pushed it aside. And when I began to have what I thought were very irregular periods, I attributed it to my approaching menopause. After all, I was 48 and the menopause scenario was exactly how it had happened to my mother, give or take a few years. I always played the numbers and the numbers said the bleeding most likely had a benign origin. Besides cancer didn't "run in my family".
So I tracked the bleeding on my pocket agenda. Good data to give my doctor when and if I should ever see one (I was one of those types who only saw one if I was deathly ill). I hadn't had a routine PAP in several years, but I always prided myself on my gynecological health...periods always painfree and regular, never any problems, not even a yeast infection. Except for this bleeding that continued in no apparent pattern. And I WAS a little tired from time to time.
I spotted throughout the summer and into the fall. Intermittently, I would pore over women's health books to check for possible causes of irregular bleeding, but still believed it was anything BUT cancer. The numbers said it probably was not...and I believed the numbers. By Thanksgiving I couldn't ignore it any longer. I had been up since early morning wrestling with a fifteen pound turkey for the family feast and after the last dish was put away, I went to the bathroom and discovered that what had been an occasional spot was now a steady drip-drip-drip. I made an appointment with a gynecologist the next day.
By then I was bleeding so much that a PAP was out of the question. Instead, since he couldn't see the cervix, the doctor ordered a D&C and hysteroscopy. I still felt the numbers were on my side...this was exactly what had happened to my mother and everything had turned out well. When I arrived at the out-patient facility for the procedure, I was asked to give my permission for a cone biopsy of my cervix. I agreed to it without giving it much thought. The procedures were uneventful and I remember the doctor telling me that everything went well as I was waking up. That was that, I thought, no more periods.
Alone in my office a few days later, I received a call from the gynecologist. The pathology report indicated cancer of the cervix, he said, and he referred me immediately to a specialist called a gynecological oncologist. I should make an appointment right away, he said (Is he talking to me? Did he really say cancer?). He may have said more, but I don't remember, I was dumb struck. I think I asked if I could be cured. I drove home in a daze and made the call to the cancer center (Am I really calling a cancer center???). The gynecologist had called to set things in motion. They knew who I was, and I could see the specialist immediately.
The cancer center was a three-story building with green windows that resembled orderly cells. A statue called Lazarus stood in front, but I didn't appreciate its significance until some weeks later. I had hurried in from the parking structure to be on time and as I was changing into the gown in the examination room, I discovered that the pad I'd been wearing since the biopsy was soaked through and I was bleeding heavily. I called the nurse and immediately I was on my back and several people were working over me, all trying to stop the bleeding. (I'm going straight to the hospital now.) Thankfully, the bleeding was stopped there in the office, but it was impossible to do a proper pelvic exam that day and the staging would have to wait.
So, I dressed and went into the conference room to meet my husband and my new specialist. As I walked in, he continued to examine me, feeling my clavicles, asking me if I had any shortness of breath, any swelling of the legs. In retrospect, I understand that he thought I was pretty sick...but I didn't know that then. In my mind, if I did have cancer, it was not invasive. That's what the numbers indicated about cervical cancer. It was usually caught early and therefore highly curable. But, unfortunately not in my case as I soon learned. I remember watching all the blood drain from my husband's face when the doctor told us that I had invasive moderately well-differentiated squamous cell cervical cancer that exceeded the margins of the cone biopsy. More treatment was surely necessary, but how much and what kind would depend on the final staging which couldn't be completed that day. He also explained to us that this type of cervical cancer was related to HPV...so much for the myth of my gynecological health.
The next week was spent in that peculiar state of suspense all too familiar to those of us with cancer. If my cancer was found to be confined to my cervix (Stage 1), I would have the option of hysterectomy or radiation...both offered equal chances of cure. If the cancer had spread further, both surgery and radiation would be necessary. The following week, on the basis of clinical examinations performed by both my gyn-onc and his associate, I was staged at 1B and I opted for the hysterectomy. I chose this course of action not on the basis of any research, but for purely emotional reasons. I wanted the cancer gone, cut out completely, and the whole idea of radiation seemed like voodoo to me. I just didn't understand how invisible particles could destroy a tumor. And once again the numbers seemed to be working in my favor. Stage 1b cervical cancer has an 85-90% chance of cure.
Two days after Christmas, 1995, I was admitted to the hospital for a total abdominal hysterectomy and bilateral salpingo-oophorectomy (TAH/BSO). Instead, I went home five days later having had a BSO, exploratory laparatomy, and a bilateral pelvic and para-aortic lymphadenectomy. Because he encountered several grossly enlarged (and malignant) pelvic lymph nodes, my gyn-onc removed only my tubes, ovaries and all the lymph nodes he could find. My uterus, cervix (and tumor!) were left in place for future radiotherapy. The numbers had failed me again...only a small percentage of Stage 1B's have lymph node involvement.
My memories of the hospital are sketchy at best. I think I sensed on some level that something was wrong as I slowly came back to consciousness in my room and saw my husband sitting silently at the end of my bed. He was just looking at me, not even reading. Very uncharacteristic of him, I thought, and I pretended to sleep. The next morning my very solemn gyn-oncologist gave me the bad news that the cancer had spread and that I would need further treatment. Later in the day, the gynecologist visited. He had assisted in the surgery and was visibly upset, holding his little finger up to indicate the size of the swollen nodes. Then he said something about waiting five years to know if I would be cured.
For the rest of my hospital stay I refused to wear my glasses, preferring to spend my days in a myopic haze. Maybe this was the reason that the clearest memory of my time there was the dream I had the night I learned the cancer had spread. Even four years later, it remains vivid, a variant of a recurrent dream I've had throughout my life involving water undermining the foundation of the house in which I live. In former dreams, pounding surf decimated my security and washed it out to sea, but in the hospital the dream took on a new form. The water had assumed the form of gradually rising flood waters this time, undermining the foundation in small rivulets that could be diverted only temporarily before finding new points of entry. The destruction took place more slowly, but just as surely.
I went home from the hospital on New Years Eve, 1995, wondering how much of 1996 I would be around to see. My body slowly and steadily recovered, but my mind was another matter. I had to wait at least six weeks before I could even begin radiotherapy, and, although the infected lymph nodes had been removed, the primary tumor was still inside me, threatening to find new routes of incursion. In retrospect, I think this was the low spot on my cancer journey. I was in such an information void, too. My husband had tried to get me on-line, but for some reason I resisted. I had no idea of the information and comfort I would be able to find there. I was hungry for survivor stories. Instead, I heard from a woman whose mother had been in the hospital dying a year ago. I had never known what kind of cancer she had. It was cervical cancer, her daughter said, and proceeded to tell me the details of her mother's treatment and death. I felt my heart fall into my stomach.
After six weeks of recuperation, I was healthy enough to start my radiotherapy. My pre-treatment consultation with the radiation oncologist lifted my spirits. She was extremely optimistic about my recovery, telling me about an elderly patient of hers whom she had treated for a similar stage of cervical cancer many years ago. My husband and I really needed to hear something positive right then and we celebrated with juicy hamburgers on the trip home.
My treatment plan consisted of 28 external treatments to be followed by two in-hospital brachytherapy (internal) treatments. Having been in a state of inaction for the last six weeks, I gratefully accepted the new routine. At last I felt I was doing something. Every weekday morning at 10:00, I would pass the Lazarus statue on my way to radiation oncology, ignoring the special parking spots reserved for patients undergoing radiation and chemo. I took an odd pride in using the nearby structure. It made me feel like less of a patient to walk that small distance. Treatment itself took only a few minutes. I lay on a table while a large machine, reminiscent of a telescope, bombarded my pelvis on four sides with healing beams. Day by day I became more fatigued and towards the end of treatment, needed to nap when I returned home. And then the diarrhea set in. But I had made up my mind to do what ever was necessary for my recovery and so I put one foot in front of the other and completed the 28 treatments. I wanted to do everything I could to get those numbers back in my favor.
After a two-week respite, I undertook the final leg of my treatment journey by having the two intracavitary brachytherapy treatments spaced at a two-week interval. These treatments (see FAQ for description of brachytherapy) proved to be more uncomfortable than painful. I certainly wouldn't choose to do them, but cancer is a powerful motivator and I was willing to do just about anything. My last treatment was completed on April 1, 1996...almost four months had elapsed since my diagnosis.
Aftermath and Support
After completing my radiation treatments, I made an appointment to see my gyn oncologist. I learned that I wouldn't know whether the cancer had been eradicated for sure until biopsies were taken in three months. Wanting to know the numbers, I asked him about my new prognosis. What had once been an 85-90% chance of cure, had dropped to 60-65% on the basis of the positive nodes. Not to worry, said the gyn oncologist. I still had the option of having an operation called a pelvic exenteration if the radiation had failed me. I was horrified when he explained to me that an exenteration involved removing everything in the pelvic cavity including bladder, rectum, and portion of large intestine! Fifty per cent of women can be cured with this procedure, he said, reducing the numbers yet again. This information finally drove me to the web.
I first sought information, then stumbled onto news groups and support lists of real, live cancer patients and survivors. But precious few had cervical cancer. When a list for gynecological cancer was started a year or so later, I was one of the first to join. Although I was through with the active part of my battle, I was so grateful to find others like me. What a help such a group would have been when I was first diagnosed or while I was undergoing treatment!
Three months later my cervical biopsies came back negative. The radiation treatment HAD worked; I would not need further surgery!! That night my husband brought home a bottle of champagne and we celebrated another milestone. I settled into yet another routine, that of follow-up care. I saw the gyn oncologist for PAPs and pelvic exams every three months alternating with the radiation oncologist for pelvic exams every three months. At one time I calculated as many as fourteen pelvics a year!!
Approximately one year after I completed treatment for cervical cancer, my annual mammogram revealed a cluster of calcifications in my right breast. Biopsy indicated ductal carcinoma in situ, or very early breast cancer, not yet invasive. While relatively non-life-threatening, the recommended treatment protocol included a surgical reexcision to get clean margins and a course of radiotherapy. This, and a subsequent complication of surgery and radiation, lasted through the next year and, had the effect of postponing my fears of recurrence of my cervical cancer. I had learned a lot from my first cancer experience and things were very different this time around. I knew the ins and outs of dealing with the medical system, how to access information concerning treatment options on the web, and most importantly, I knew where to find communities of supportive women there.
Life Goes On
As I write, four and a half years have passed since my initial diagnosis. And, with the exception of a few minor bumps in the road, I have done very well. No major side effects from treatment, and most importantly, no recurrence. So far, so good, as they say. And although I know nothing is a sure thing after a cancer diagnosis, I have learned to take better care of myself in order to avoid further contact with the beast. I know that I can't just play the numbers...I need to take an active part in my health care. And I also know that I am very, very lucky.
And so I offer this story as an object lesson to those, like me, who ignore symptoms and put off seeking medical attention. Believe me, speaking as someone who has been diagnosed with both types, it is MUCH easier to deal with a cancer that is caught earlier rather than later. I also offer this story as a bit of hope to those who receive less-than-favorable prognoses. It IS possible to get better despite the positive nodes. That's what I would have wanted to hear, four and a half years ago.