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My Story | Sue D., Pennsylvania, USA

Endometrial cancer, Stage 1A, June 1997 at 44
Total abdominal hysterectomy (TAH/BSO)

Cancer never entered my personal vocabulary until I heard my doctor say those unforgettable words, "Sue, it's cancer." "No, you are mistaken," my mind fought back, "we don't get cancer in my family--I'm sorry, you've been given wrong pathology results."

My family died of heart and lung disease. I was pretty sure that I would die gasping for breath, as by the age of 42, I had already been hospitalized four times totaling 36 days (plus numerous emergency room visits) with uncontrolled asthma. At least once, my doctor admitted later that he was afraid he was losing me.

During that bout in 1985, I was put on very high doses of intravenous corticosteroids as part of the regimen to get me breathing normally again. One of the many side effects of this powerful hormone/drug was changing my menstrual cycle. Before this hospitalization, my cycle averaged 28 days, though it could vary a day or two either way. Afterwards, it averaged about 20 days. My gynecologist prescribed birth control pills for several months to try to force me back to normal again. But as soon as I was off the Pill, my cycle would revert to 18 to 24 days--never as long as 28 days. After several attempts, they just concluded that my periods were "regularly irregular."

That was the extent of my gynecologic history, as I had no children and no other remarkable problems. The rest of my medical history was anything but uneventful, however, as I seemed to require about $300 worth of drugs per month simply to breathe, and a hospitalization every few years when things fell apart. After my last asthma in-patient hospitalizations -- two of them back-to-back in 1995 -- my doctor told me I needed to take a three-month disability leave because I was risking my life to continue the work schedule I was keeping. I took the leave. I also began taking some new asthma drugs that worked well enough to enable me to start with a personal trainer to try to gain some semblance of fitness. Through a lot of hard work, I finally felt better than I had in years!

At the beginning of 1997, my health and I were doing great: I had managed to stay off steroids for about six months, gotten out of a stressful job and was launching a new fulltime business of my own. Then in February, my periods became a bit strange: I'd bleed for 10 days straight, then stop for 12, then start bleeding for 2, then off for 18, then on for 14. There was no rhyme or reason. I also started getting very depressed for a couple of weeks at a time, then it would lift for a couple of weeks and then go back to depression.

My family physician ruled out thyroid problems as the cause for the depression and told me that I shouldn't assume my "irregular periods" were just perimenopause--I needed to get to my gynecologist and find out what was going on.

Fortunately for me, my GYN pursued a real diagnosis and did not just blame my symptoms on encroaching menopause -- I was still a bit young for that. She decided to do an endometrial biopsy, though didn't tell me what she was looking for -- just to "find out what was going on." Cancer never crossed my mind and I was blissfully unaware that an endo (endometrial) biopsy is done to diagnose or rule out endometrial cancer. She was unable to get the biopsy instrument through my cervix, which she explained was not uncommon in women who have never given birth. I had started cramping badly by the time she quit trying. Without the biopsy, she took another diagnostic route and ordered a transvaginal ultrasound for the following week to check the thickness of the uterine walls. In the meantime, she put me on birth control pills to try to get the periods back on track.

Meanwhile, the cramping after the failed endo biopsy continued throughout the day. Several days later when I was bathing, I stared in horror at a 2-inch diameter piece of skin-like tissue that came up in my hand while I was washing. To risk an unappetizing description, it looked like burnt pizza cheese--yellow with dark brown and red splotches. I'd never seen anything like it and even asked my mother to look at it--she agreed it didn't look like anything that should be coming out of anyone's vagina!

I called the doctor's office right away to report this hideous thing under the category of "any unusual discharge," talked to a nurse, gave my description and offered to bring it in to be looked at and biopsied. She called me back to tell me the doctors said it was a "mucus plug" and I did not need to bring it in--amazing that they can do pathology over the phone nowadays! ;-) I explained that as an asthmatic, I knew a little something about mucus and this was not mucus! "No," she said, "the doctor says it's mucus and besides we'll be doing the ultrasound next week and it will tell us if anything is wrong."

Wrong? Things were already plenty "wrong." The intermittent depression I was having deepened into full-fledged mood swings, I was nauseated every morning, had headaches and cramps, yet in spite of the birth control pills, the bleeding was still coming and going at will. Clearly, my hormones were running wild – I believe the clinical term is "goofy."

The transvaginal ultrasound showed thickened endometrial walls, so my doctor scheduled a D&C (dilation and curettage), hoping that it would cure what was wrong -- most likely hyperplasia, an overgrowth of endometrial cells -- as well as diagnose it. Because of my asthma, my D&C was scheduled for the hospital where an anesthesiologist and respiratory therapist were available. I was terrified, not of the surgery and certainly not of what they might find (our family didn't get cancer, remember!), but of what effect any surgery might have on my breathing. I alerted my lung doctor and asked him to brief the GYN on my asthma history.

The D&C and hysteroscopy went well. A respiratory therapist checked my lung function before surgery and afterwards--I was breathing well. They had used a local anesthetic with Versed (to keep me from remembering the surgery), neither of which affected breathing. The GYN removed a polyp while doing the D&C and sent that and the "scrapings" to the lab, though she reported that "everything looked clean."

Everything was not clean. A few days after the D&C, my GYN called me to tell me that the pathology results came back and "Sue, it's cancer!" She couldn't be more surprised since it didn't look like cancer (perhaps because what looked like cancer had been shed in the bath?). I had that multi-symptom reaction that I think everyone has when they hear those words, "its cancer": the blood drained from my body into my feet while acid in my stomach took the opposite route and came up my throat. Shock! She went on at a brisk clip telling me what had to happen in the next couple of weeks: a total hysterectomy, and at my age (44), an oophorectomy (removal of the ovaries), since of course, I would be menopausal soon anyway. She explained that I would no longer be able to have children, but at my age, I wouldn't be having any children anyway.

Well, that certainly decided things in a hurry! I had never really made a choice to be single and childless -- life never slowed down enough to become involved in a relationship: I was a professional over-achiever, and my personal life was divided between serious family problems and trying to keep my own health together. For whatever reasons, I was still single and I was not interested in becoming a single mom -- I saw first-hand among some of my friends what a difficult walk that was. But I had never given up the idea and coming face-to-face with the realization that I would never have a child was a final blow to a dream that had been slowly evaporating over time.

The day after my doctor's call, I went to a business meeting at my former employer, now client -- still in that shell-shocked state that engulfs everyone after a cancer diagnosis. After the meeting I remembered a woman there who had had ovarian cancer. I felt drawn to go see her. Gina was there, and I closed her office door behind me and started to shake and cry as I told her, "I just got a diagnosis of cancer yesterday!" She totally surprised me by bursting out, "You got a cancer diagnosis yesterday? Guess what? I got a cancer diagnosis yesterday, too!" Incredibly, she had just been told her ovarian cancer had recurred and she would have to have a total hysterectomy this time, rather than the fertility-conserving partial surgeries she'd had previously. We immediately hugged, cried, and talked for an hour that afternoon. We made arrangements to meet for lunch every week for the next three weeks until our surgeries were scheduled. (Read Gina's story here.)

I believe God drew me into Gina's office that day. How different my experience would have been had I not. From Gina, I learned the ropes: what a CT (computed tomography) scan was, what surgery would be like, to be prepared that they would likely place me on the maternity ward after surgery, to shop for the craziest slippers I could find--something to look down at and say "nobody wearing these ridiculous slippers could possibly die!" (I chose Wylie Coyote, by the way -- a guy who never gives up, regardless of how many times he is foiled!). We became our own support group of two.

Again, I had many questions about the surgery's potential effect on my asthma as I did about the cancer itself. I turned to my family doctor to coordinate care between my lung doctor and the GYN. The day after my diagnosis, I called her office with a barrage of questions. The nurse called me back in about 10 minutes; she wanted me to come in that afternoon at the end of the day's appointments (I was stunned at the quick response!). She greeted me with a hug and spent 45 minutes answering all of my questions. My primary question was how could I stay on my oral asthma medications during the rigorous two-day bowel prep my GYN wanted before surgery -- wouldn't my medications just shoot through me like the rest of the liquid diet? She got on the phone and arranged to have me admitted the day before so she could switch my oral drugs to IV and have the respiratory therapists administer my inhaled medications and monitor my lungs. "What about anesthesia?" I asked? She assured me that I would be put on a temporary dose of steroids to help with the stress of surgery. The other big question: How did an immune system that leaps to my defense when threatened by a harmless grain of pollen let those cancer cells grow and multiply unchecked? She didn't know either. But I left her office that day feeling very much like I was being taken care of --another gift from God.

Gifts from God notwithstanding, during those three weeks between diagnosis and surgery, my primary emotion (besides fear, of course!) was anger in all its many forms, from irritation to rage. I seethed inside when friends told me "It will be OK," thinking "No, it's already not OK -- I'll never feel safe again; I'll never have children; my life-giving organs have decided to deal death instead!" (Melodramatic sounding, looking back on it, but the feelings were very real during those terror-filled weeks before surgery when my cancer would be staged.)

I was even angry with my uterus. Then the Sunday morning before my surgery, I woke with a new insight--my uterus was the victim, not the culprit! I suddenly was washed with sorrow and grief. My womb was not trying to kill me, rather it had kept the faith for me for 33 years: every month (every three weeks the last 12 of those years!) it prepared itself, hoping that maybe this time it would have the chance to nurture a new life. And every month it was disappointed. But it never gave up hoping. I sobbed deep, wracking sobs, grieving my loss of the babies not born, not even conceived. How do you have a funeral for a uterus? After the sobs subsided, I put my hands on my lower abdomen and thanked my uterus for keeping hope alive, for its faithfulness. I said good-bye.

After that exhausting morning, I found some peace and accepted what had to be done to save my life. The remaining days before surgery were spent getting blood work and chest x-rays, and meeting with the anesthesiologist. When I told him about my fears about complications from asthma, he told me that I didn't have to have general anesthesia, that I could have an epidural ("saddle block") instead, with a drug Versed to put me into a "twilight sleep" so I would have no memory of the surgery. This was similar to what I had had for my D&C, during which my lungs had cooperated very well. I was so relieved not to have to have general anesthesia, which suppresses breathing and can be a bit difficult for respiratory disorders. I couldn't control everything that was happening to me, but having arranged to deal with what I did have some control over and "hiring" the right doctors and staff, meeting with my therapist to talk over the intense emotions associated with cancer, I finally felt ready for my hysterectomy.

My GYN had ordered two days of liquid diet before surgery with laxatives and enemas both days so my bowels would be squeaky clean for surgery (see FAQ on bowel prep for the reasons). I spent the second day of the prep, the day before surgery, in the hospital getting rigged up with an IV to administer my oral asthma medications and breathing treatments to take over the inhaled meds.

I listened to relaxation tapes to stave off last minute jitters on the way to surgery the next morning since I was wide-awake (in fact, my doctor gave me permission to listen to the tape during the surgery, which I did). I remember sitting up to let the anesthesiologist give me the epidural, then nothing. When I woke up in the recovery room, my family doctor was holding my hand! She had come down to see how I was doing as the blood level of my one of my asthma drugs was high and needed adjusting. I was impressed even in my grogginess!

Back in my room when the epidural wore off, I was ready for the pain medication they had added to the IV. But I did not have to go through any of the coughing exercises patients with general anesthesia are required to do. I had no nausea. I was so grateful for the epidural option. Those first couple of days were painful, but I was out of bed the day after surgery when they removed the urinary catheter. Every move I made seemed to involve my abdominal muscles! I blessed my trainer for focussing on my abdominal and thigh muscles in the weeks before surgery. I credit her for my ability to get up and down off the toilet and roll over in bed!

My GYN told me that from the appearance of the gross pathology (a more apt term, I've never heard!), it looked very good--that my cancer was an early stage 1. She explained that after she removed the uterus, fallopian tubes, and ovaries, the pathologist came into the operating room to examine my uterus. If it looked like the cancer was more than halfway through the uterine wall, they would have taken lymph nodes to biopsy, but in my case that was not necessary. They would have a complete pathology report before I left the hospital. (See FAQ on surgical staging of endometrial cancer.)

The rest of my hospital stay was spent being weaned back on to my oral asthma medications and waiting for my bowels to wake back up. My GYN explained that the bowel does not take kindly to exposure to air, much less the brisk rub-down they give it during a cancer surgery as they examine it for any masses. Mine showed no signs of action. On the fourth day after surgery, I was literally fed up with bland broth and yellow and green jello. With the approval of the nurses, I asked my mom to stop off at the Chinese restaurant and get an order of won ton soup, holding the won tons. I never tasted anything better in my life! That afternoon with the encouragement of a few intestinal gurgles, my GYN sent me home without waiting for the customary "passing of gas."

I returned home newly menopausal and had my first hot flashes within days. They were intense and woke me up every two hours in the middle of the night. Even more intense were my own thoughts. I alternated between fear of menopause and fear of cancer. I did not feel safe in my own body. I busied myself in research mode to find out much as I could about both, and what self help measures I could take to keep away cancer and fend off the negative effects of surgical menopause, as my GYN had said hormone replacement therapy (HRT) was not an option with endometrial cancer. I found plenty on cancer and menopause in general, but next to nothing on gyn cancers and surgical menopause. I kept a journal during those weeks of recovery that reveals where I was:

I've had a couple of down days yesterday and the day before. A little flipped out that if I don't get all any fruits and veggies and soy and calcium, I'll get eaten away by cancer, crumble into a shapeless blob, or ignite into flames! Of course, to make sure I'm getting them all in, I'm overeating, which will definitely give me both cancer (breast and colon) and heart disease! It's all up to me, I think! It was getting out of hand.

Then I shift into the opposite mode: But I've been doing my diet by the book for eight years now and look where it got me! So, what's the use? It must have happened because I was overweight. It's my fault after all! And I didn't have any kids (another endo cancer risk factor), so it's use it or lose it? Which puts me over the depression edge or makes me determined to fight back and go back into eat-for-the-cure mode!

In another entry I compared my experiences with the two life-threatening diseases I now proudly owned:

Asthma feels like death is on its way. Then you go to the hospital for treatment and you feel better and go home. With cancer, I felt great, but learned there was some silent deadly process going on inside, and on faith, I have to accept that it's happening. They take me to the hospital feeling healthy (relatively!), invade, violate, and maim me, then send me home in pain and disabled! The cure definitely feels worse than the disease. I don't feel like I'm dying and these "life-saving measures" seem extreme.

My body has once again gotten its signals crossed and the normal processes have gone so awry that they threaten to kill me. My immune system is so screwed up, it thinks a piece of pollen or house dust is death-dealing toxin, but doesn't recognize truly fatal cells or it doesn't know how to fight them. Fighting benign visitors and letting malignant invaders set up housekeeping. How can I trust a body like that to take care of me? The cancer is just more mounting evidence that my body can't be trusted. I feel more vulnerable than ever and more hard-pressed to convince myself that my body is not my enemy.

I was also worried about heart disease as it was rampant in my family, my father and his father having died in their 40s and 50s of coronary disease. Until my abrupt menopause I had always felt protected by my ovaries. I talked to my family doctor about it. Looking at my family history (which, true-to-form, I provided in a computer-designed family tree!) full of heart and lung disease and devoid of cancer (except mine and agreat-grandmother), she agreed I needed more than a textbook answer to the HRT question. (See the FAQ on HRT and endo cancer.) She referred me to a gynecological oncologist (GYN-ONC) at the major teaching hospital for follow-up.

The GYN-ONC did a thorough reevaluation of my case, looking at all the original CT films and pathology slides again, and having them re-read by another radiologist and pathologist. He looked at my family tree ("genogram" in medical lingo) and did a thorough case history. He joked, "Well, the good news is that I think you are much more likely to die of a heart attack than cancer!" Because I had a Stage 1A, grade 1 (not very aggressive) cancer, he assured me that it was very safe for me to use a low dose of HRT, and in fact, with my family history, he recommended it. I felt a great sense of relief to have my instincts confirmed and my concerns validated. Though I'll always be grateful that my GYN was aggressive in pursuing a real diagnosis and did not just chalk up my bleeding to perimenopause, I decided I needed to switch to the GYN-ONC for my follow-up care.

At our first post-surgical lunch, Gina and I waddled into the restaurant together-- I ordered a huge salad with lots of vegetables; she ordered a four-cheese focaccia sandwich. As soon as the waitress turned her back, she said, "Calcium for osteroporosis!" I replied "Antioxidants and fiber for heart disease!" We had a good laugh that only other survivors would understand. We spent much of that lunch lamenting the lack of information available to help gyn cancer patients understand what is happening to them and make good decisions about their care. She is a TV producer and I produce educational materials for a living. If we couldn't find information, we figured no one could and vowed to do something about that. This web site is the first fruit of that vision.

I'm finishing this story on the third anniversary of my hysterectomy. By the grace of God, I am three years cancer-free! I'm obviously not free of thoughts about cancer or I wouldn't have built the site or be a member of its discussion list. But, Thank God, I'm not consumed with thoughts of what my next deadly disease will be! I'll always be vigilant, though, because once you've heard those words, "It's cancer," there is no turning back..

June 2000

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