Endometrial cancer, stage 3c, grade 2
Diagnosed 2002 at 50
Hysterectomy, radiation therapy, hormonal therapies
I feel the blood draining from my face and my hands growing cold and clammy as I write this. Even though I was diagnosed with cancer in October 2002, there is still some part of me that still can’t believe I have cancer. I still feel a shot of terror, which shakes me, even though my last treatment was in July 2003.
I sailed fairly smoothly through menopause without the use of hormone replacement therapy (HRT). I took black cohosh at one-quarter the recommended dose, and I drank lots of soymilk, took vitamin E, exercised and watched my diet. All of which seemed to help with the hot flashes. My last period was on my 49th birthday in December 2001, though at that time, I didn’t realize it was the last one. I still had hot flashes.
In Spring 2002, I had a little clear mucus discharge, very similar to what I had experienced during ovulation. I asked myself, "Now what? Am I starting to ovulate again?" It stopped after a couple days, and I disregarded it as yet another symptom of menopause. I was still having hot flashes and continued to have similar incidents about a month apart throughout the summer. "Just more menopause," I thought. In September 2003, I had a drop of blood - a dot the size of a lentil. I typed the words "post menopausal bleeding" into my web browser. Lots of information about cancer came up. I ran to my gynecologist!
The gynecologist did two uterine biopsies. What looked like a 16-inch soda straw was inserted through the cervix into my uterus. She sprayed the cervix with a little numbing spray first, which helped. "Not too bad," I thought. I’d compare the pain to tooth drilling. She talked to me about cancer but said it could be many other things, and if it was cancer, she was sure we caught it very early.
The gynecologist ordered an ultrasound. The technician let me look at the monitor during the procedure, and I could see the thickened uterine lining. High up in one corner of the screen I saw a small round tumor. "Likely just a fibroid," the tech assured me.
It was cancer. Two weeks later, I had a complete hysterectomy. My uterus, cervix, ovaries and most of my lymph nodes were removed in order to stage the cancer. I had argued to keep as many body parts as possible - after all, I did not want to be castrated! The gynecologist was adamant. She explained that uterine cancer thrived on estrogen and it would be best if my body could not produce any of the hormone. So, I deferred to her expertise and learned a new meaning for the word "staging." Until that moment, I thought "staging" had something to do with acting or driving horses to deliver the mail. I soon found out it meant a cancer-search mission throughout my abdomen, taking samples of everything and looking for disease.
I had the hysterectomy in October of 2002. The surgery went smoothly - it took place on Monday. The gynecologist performed the surgery, thinking that since the cancer was in its very early stages, the operation would be very similar to a TAH (Total Abdominal Hysterectomy). The gynecologic oncologist arrived at some point during the surgery, removed lymph nodes, performed other samplings, and closed. By Tuesday morning I felt pretty good. The IV, catheter, and drain were removed, and I got up and walked. I counted 17 staples in a vertical incision from navel to pubic hair, and while my intestines were a little stubborn about returning to work, they soon got on track. I requested reduced pain meds and felt pretty perky. When the doctors visited, they assured me everything looked great. They commented on how clean and fat free I was inside, which I attributed to 30 years of a vegetarian diet and lifelong exercise. By Wednesday, the pathology report was completed. The cancer was not caught early - it was stage 3C, grade 2 and had spread to my lymph nodes. I was terrified. I was still having hot flashes, but I was allowed no hormone therapy (not that I would have taken it) because of my advanced disease.
I discovered there are two types of endometrial cancer. I had type 2 adenocarcinoma. Type 2 occurs in women who are a bit younger than most endometrial cancer patients, specifically, women who are short, slender and white. This is very different from what you will read almost anywhere about the risk factors for endometrial cancer. Type 2 also seems to be more aggressive and tends to metastasize early. Most importantly, I want people to know how few symptoms I experienced. I discovered that, statistically speaking, 15 percent of endometrial cancer patients have no symptoms!
I had my first CT (computed tomography) scan and CA 125 blood test that afternoon and was sent home to heal for a few weeks before beginning radiation. I felt good enough to walk three miles the next day and resume weight lifting using light weights.
Radiation started in November 2002. I learned another new word - "simulation." What "simulation" meant for me was: lying on a cold steel table for two and a half hours, naked from my breasts down (except socks) while young male technicians, doctors, dosimetrists, and radiation nurses wrote on me with permanent marker with noses six inches from my formerly "private" parts, tattooed a black dot on each hip, and planned my radiation treatment. It was strange being the only partially naked person in a room full of people.
To maintain my health insurance, I worked during most of the treatment. I scheduled radiation during my lunch hour. The treatments were five days a week for eight weeks. I lost 20 pounds and bled when urinating and defecating. I was plagued with constant diarrhea, vomiting, nausea, extreme fatigue and lost all my pubic hair. The skin in the "bikini area" and between my cheeks, burned, turned black and peeled off. I screamed in pain when I used the bathroom. I begged them to take my rectum out of the field but they refused. In December, I celebrated my 51st birthday. I was just glad to be alive.
Then came the internal radiation. I thought that since it was only three treatments, it might be easier. I was in for a surprise. I was allowed two weeks to heal before the internal radiation started. For the simulation and first treatment, a catheter was placed in my bladder, a probe in my rectum and the delivery tube in my vagina. Even with Darvon and Valium, the pain was intense. My dear husband read to me out loud to take my mind off it. He was my strength and hero throughout the treatment. The next two treatments were 30 to 45 minutes each, and only the vaginal probe was used. Scar tissue from the treatment closed most of my vagina. I am not able to have intercourse.
I was sent to a gynecological oncologist (gyn onc) for the next phase of my treatment. He began the interview by reminding me that I had a less than 50 percent chance to survive. He prescribed alternating regimens of Megace and tamoxifen - three weeks of one followed by three weeks of the next for six months. The side effects of the tamoxifen (more hot flashes) were tolerable. The Megace made me swell like a balloon, gain weight and have numb hands and feet. The way it was explained to me was that even though tamoxifen acts like a type of estrogen on the reproductive system, it makes the cancer more vulnerable to the progesterone in the Megace.
The gyn onc recommended that I remain on the treatment for the rest of my life. I refused, so we compromised, agreeing that I would remain off the treatment if I continued to have clean CT scans. That was July 2003. I was never offered, nor did I ask for, chemotherapy.
It is now spring 2004, and my CT scans and X-rays have been clean so far. The CA 125 numbers have been low, and I see my doctor every three months for a Pap test and pelvic exam. The CT scans are scheduled every six months, and I have blood tests every three months.
I have a lot of painful scar tissue and adhesions in my abdomen, which restricts my ability to stretch and move, and I have lost a lot of bone density. I have back pain and circulation problems and cramps in my feet and legs. Most of my abdominal lymph nodes were removed so I have swelling in my abdomen and sometimes my legs. Most of my pubic hair did not grow back, and it is still painful to urinate. I have at least one bout of diarrhea every day. The incontinence I first experienced seems to have been alleviated by lots of Kegel exercises. I abandoned my vegetarian diet since I can tolerate very little fiber. And I still have hot flashes!
I get depressed about the loss of my health, sexual activity and stamina. Recurrence is still a concern. I see a therapist to help me through the feelings of loss and fear. I am off all drugs, and I take vitamins to help with the fatigue. I take more time off from work. I get myofascial massage treatments to help move the scar tissue, and I try to exercise every day. The radiation oncologist says I’m probably as good as I’m going to get - there may be small improvement and/or there may be more problems later.
I am 52 and have now survived about 18 months and have returned as much as possible to my former life. I have lots of new survivor friends. Recently, a friend asked, "Knowing what you know now about the treatment and aftereffects, would you do it again?" I didn't even have to think about it for a second. Absolutely yes! I am alive, and thankful.