I was diagnosed on April 7, 2005. I remember getting the call at work. When the doctor said, “I got the results from your biopsy, and you need to come to my office now,” I knew something was really wrong.
I was 32 years old. I had been dating Stephen, now my husband, for about a year and a half. We had talked about marriage, but nothing was immediate. We hadn't even talked about a family yet. But now I had to tell him that I could never have a child. I felt like my whole life just flashed in front of me. And all my dreams had died.
The doctor spoke to me for an hour and a half. And by the time I left, I had agreed to have a hysterectomy.
Choosing a Surgeon
My gynecologist wanted to do the surgery immediately, but I asked him to wait until my mother got home from a business trip, in four or five days. I spent the next few days trying to come to terms with having cancer and what it would mean for my life.
Then my doctor called and said, “I'm cancelling the surgery. We're not doing it. You're going to New York to see another doctor.” He had presented my case to his colleagues at the Cancer Institute at Robert Wood Johnson, where he is affiliated. They suggested I see Dr. Nadeem Abu-Rustum at Memorial Sloan Kettering Cancer Center. They said Dr. Abu-Rustum was doing a new procedure that could potentially save my uterus.
The first time I walked into Sloan Kettering I was amazed. It wasn't at all what I expected. When you think about people with cancer, it feels gloomy. You think of patients who are really sick, who lose their hair, and are frail. That's what I expected to see. But Sloan Kettering was lively. People were happy. The outpatient building on East 53rd Street is beautiful — there's a waterfall and plants and everyone is really nice. It was a relief to feel so comfortable in that kind of situation.
Stephen and I met with Dr. Abu-Rustum about two weeks after my original biopsy, and he did another one at that first appointment. In the short amount of time between the two biopsies, my cancer had progressed to a later stage. It was moving fast.
Dr. Abu-Rustum carefully reviewed my case, and told us I was a candidate for a procedure called a radical trachelectomy. He took his time explaining that it is a procedure to remove the cancer in my cervix without removing my entire uterus. After what seemed like a whirlwind of information, we found ourselves sitting in the car saying, “Okay, did that all really happen? Did he just say he might be able to save our chance to have children?”
He said if the procedure was successful and I was cancer-free, then in six months to a year we could think about conceiving. But to conceive we would have to go through in vitro fertilization. He said the chances of us conceiving on our own were about 5 percent. But we were fine with that. At least we might still be able to have kids.
Nadeem Abu-Rustum, MD: When Michelle first came to see me she'd had a series of abnormal Pap smears. A conization (biopsy) of her cervix in April 2005 showed an early invasive cervical cancer, stage 1B1. The standard treatment is usually a radical hysterectomy (removal of the cervix and uterus). But Michelle wanted to try to preserve her fertility. We reviewed her pathology reports, performed another biopsy to confirm the diagnosis, and talked to her about the possibility of a fertility-sparing radical trachelectomy, in which only the cervix is removed.
This procedure is not for every woman with cervical cancer. It is only done in women of child-bearing age who want to preserve fertility. The cancer has to be small, within certain limits, and definitely stage 1. Michelle fit the criteria, so I presented it to our disease management team, and they felt it was reasonable to proceed.
Michelle: I had the surgery on May 17th, a little more than a month after my first meeting with Dr. Abu-Rustum. I had gone to Disney World the weekend before with my mother. My niece was playing with her high school band in the parade there, and we went down to surprise her. While I was there, I got a set of Mickey Mouse ears, because I'm a huge Disney fan.
I brought those ears with me when I went in for surgery, because I knew I was going to fall apart, and I wanted to be strong for my mother, who wanted to be strong for me. I guess it runs in the family. I decided beforehand that if I wore my Mickey Mouse ears, it would make us think about how much fun we had on the trip and distract us from the situation at hand. Those ears became a topic of conversation while I was in the waiting area getting prepped. I put them on and every nurse who came by, every doctor who came by, they all chatted with me. The other patients were looking, and I could see them smiling.
As soon as I got to the recovery room, my mom brought in my Mickey Mouse ears and put them on my head. I wore them the whole time I was in the hospital. It really helped me through it. I was really scared.
Dr. Abu-Rustum: The uterus is comprised of two parts, the cervix and the fundus (or womb). The cervix acts as a door to the womb, which is the part of the uterus that expands and holds the placenta and the baby. Traditionally it was thought that the cervix was needed to be able to hold a pregnancy and that without it, the womb would be deprived of blood supply and not function. We've learned that even if two of the four main blood vessels that supply blood to the womb are removed, it will still menstruate and even carry a pregnancy.
In a radical trachelectomy, which was developed in France in the mid-1980s, we remove the cervix, reconnect the womb to the top of the vagina, and put a circular suture there to tighten the door again. Then patients can have a pregnancy and carry to term. They will not deliver vaginally because the door is artificially tightened. They deliver by C-section.
Michelle: I was only in the hospital for four days. The day before I went home, Dr. Abu-Rustum came into my room and said, “You're great, you're fine.”
I said, “Okay. But wait. What does that mean?”
He said, “The cancer is gone.”
I was by myself and suddenly overwhelmed with emotion. I couldn't think what to ask him or write down what he was saying. So I asked if he could come back a little later since I knew my mother was on her way in.
When he left, I took my Mickey Mouse ears and wrote two words on a piece of tape and put it on the back. As soon as she walked in the door, I started crying. Panicking, she asked what was wrong. I turned the ears around and on the back it said “Cancer Free.” Then she started crying. It was a nice way to tell her.
Dr. Abu-Rustum: When I operated on Michelle in 2005, the radical trachelectomy was rarely performed outside of Sloan Kettering. It's still not done very often. Technically, it's a difficult procedure, and not a lot of gynecologic oncologists are trained in doing the operation or develop the skills to do it. When we started doing them in 2001, we were doing them laparoscopically, which is a minimally invasive approach. But in 2004 we started also doing it through an open approach, with a C-section type scar.
Using an open incision has helped popularize the operation because many gynecologic oncologists don't have advanced laparoscopic skills. Now that the operation is being done successfully through an open approach, you will see it performed more, which is better for women.
My Honeymoon Baby
Michelle: In November, during a follow-up visit, my Pap smear indicated precancerous cells again. In December, Dr. Abu-Rustum did a biopsy and told me he had to go back to take a little more tissue. I said, “Can we wait? Stephen and I are getting married in January.” He said it was fine to wait a bit.
A few weeks after the wedding, I went for my pre-op testing. I was scheduled for surgery in two weeks. Before my chest x-ray, the technician asked if I could be pregnant. I said, “I don't know. Maybe.” She took a pregnancy test, and the result was negative. But two days later I took another test at home, and this time it was positive. I was pregnant. I had gotten pregnant on our wedding night!
“ Everything happens for a reason. And as long as you remember that, you’ll get through whatever you need to get through. “
Although this was incredible news, there was still the problem of the precancerous cells. When he found out I was pregnant, Dr. Abu-Rustum canceled the surgery. There was nothing he could do about the abnormal cells until after the baby was born. He did a very small biopsy early in the pregnancy that told him it had not progressed. At that point he said, “Go for it.” He warned me that if the cells progressed while I was pregnant, I might be facing a hysterectomy after I delivered. But he also told me to take it one step at a time.
Every other week during my pregnancy, we went to the obstetrician for a sonogram. I was dilated about a centimeter from six weeks on. By 18 weeks I was on complete bed rest. I took up knitting to keep myself occupied. It was tough staying in bed but going to the doctor and seeing the baby every other week was really exciting and got me through the boredom.
We knew I wouldn't go to term and had prepared ourselves for every possibility. We toured the neonatal intensive care unit (NICU) at the hospital where I would deliver. We did research on preemies, what to expect and how to handle it. We tried to learn as much as we possibly could.
At 28 weeks I went into labor for the first time. My doctor spent the next four weeks trying to stop labor. I finally gave birth to our daughter, Madeline Faith, on August 29, 2006, by Caesarean section. She weighed four pounds, five ounces.
Dr. Abu-Rustum: Michelle got pregnant naturally right away, which is very unusual. I tell my patients you absolutely need six weeks to heal, and then I tell them to wait six months before trying to get pregnant, just to make sure everything has healed well. Right at the time where we would say, okay, maybe start trying, she was already pregnant.
Another Happy Surprise
When I went for my postdelivery follow-up with my obstetrician in October, my Pap smear was negative. To everyone's great surprise, the precancerous cells were gone. It was ironic because Dr. Abu-Rustum specifically said, “Don't have a hysterectomy when you have the baby.” I had been seriously considering it because I didn't want to go through weeks of recovery from the Caesarean and then have a hysterectomy if that's what was needed for the cancer. But Dr. Abu-Rustum said, “No, no, no. Just don't do it.”
We went to see him on Columbus Day and brought Maddie. It was the first time he met her. He was so shocked that the abnormal cells had just disappeared that we call her the miracle baby. I mean, I could have gone through the whole cancer removal thing again. But she just took it all away instead.
Now I get Pap smears every six months, and I'm still free and clear. Dr. Abu-Rustum always tells us we were the quickest after surgery to have a baby. I got pregnant six months after surgery.
Dr. Abu-Rustum: During her pregnancy Michelle had a slight abnormality in her Pap smear, a very mild precancerous finding that cleared up on its own. Now her Pap smears and biopsies are fine.
Michelle: I still think about it every day. There's always something to remind me. Maddie is my constant reminder, but in a good way. Everything I see now is a positive.
I always thought, oh, I'll live forever. I'll die of old age. That's totally changed. I live for today, do things today, and say what I want to say today. How I interact with other people has changed dramatically, because I say what I feel as I'm feeling it. That's one of the big changes in my life.
Everything happens for a reason. And as long as you remember that, you'll get through whatever you need to get through. You might not know why you're going through it, but there's got to be a reason for it. Maybe one of my reasons is to be able to tell people how I got through it, to share this experience with other people. It's made me a stronger person. I don't take things for granted anymore.