A Patient's Story

	Dr. Nadeem Abu-Rustum Director, Minimally Invasive Surgery

"It was pretty scary talking with Dr. Abu-Rustum," says Caroline of that first appointment. "He took my situation very seriously. I hadn't felt that was necessarily happening before with my ob-gyn care and abnormal paps." 

Dr. Abu-Rustum looked at Caroline's previous test results and agreed that they indicated an early stage of cervical cancer. However, he wanted a pathologist from Memorial Sloan-Kettering to review the results of the two biopsies to confirm the diagnosis, and he also ordered a magnetic resonance imaging (MRI) scan to determine the extent of local disease. He explained that treatment options would depend upon how deeply into the cervical tissue the cancer had spread, but based upon the results of the previous biopsies, he thought that another cone biopsy might be adequate. Aside from being the least invasive method of treatment, it would spare the uterus and leave open the possibility of childbearing.

If more extensive surgery was in fact necessary, Dr. Abu-Rustum told the couple, Caroline might be a candidate for a fertility-sparing surgical procedure called radical trachelectomy, as an alternative to the traditional approach of removing the uterus in a procedure called hysterectomy. Dr. Abu-Rustum describes radical trachelectomy as "the most important surgical advancement in early-stage cervical cancer since the development of the standard radical hysterectomy almost a hundred years ago."

The procedure -- offered at Memorial Sloan-Kettering and only a few other hospitals in the country -- is performed on women whose tumors are very small (less than 2 to 3 centimeters in size) and confined to the cervix. Using either minimally invasive or traditional "open" surgery, the surgeon removes the cervix (the lower part of the uterus that extends into the upper end of the vagina) and some of the pelvic lymph nodes. If the edge of the cervical tissue closest to the uterus is free of cancer cells, only the cervix is removed, rather than the entire uterus. The remaining portion of the uterus is left intact and is sutured to the vagina, which creates a new cervix. Another suture (called a cerclage) is added at the juncture between the vagina and newly created cervix to strengthen the cervix. If the patient becomes pregnant after the surgery, she would be able to have a full-term pregnancy and give birth by cesarean section.

If a trachelectomy was a possibility, Dr. Abu-Rustum cautioned the young couple, conceiving after surgery might be difficult and, in some cases, is not possible. He also said that they might need the help of fertility specialists.

Caroline and Craig were crushed. "Having children was so much more hypothetical before we started to plan on getting married," says Caroline. "I didn't necessarily want to have children immediately, but I definitely wanted to someday. It was really hard to grapple with the fact that we had just gotten engaged with dreams of starting a family, and now I might not be able to have children."

A few days later, as Caroline and Craig were waiting for the second round of test results, they had their engagement party but chose not to discuss the diagnosis. "We didn't want it to be a party where people were talking about it," remembers Craig. "We just wanted it to be a celebration." Adding to the stress of that time in their lives, Caroline was finishing up a semester of graduate school in social work at Hunter College. "I was so stressed out about all of this and also about exams," she recalls. "I didn't have a moment to get excited about the party or even think about what I might wear. The night before the party, Craig came home with two really beautiful dresses for me to choose from. That was a really nice touch."

A few weeks after the engagement party, Dr. Abu-Rustum called with Memorial Sloan-Kettering's biopsy analysis, which indicated that the cancer had invaded deeper into the cervical tissue than Caroline's previous doctor had thought. These results, coupled with the radiologist's reading of the MRI, led Dr. Abu Rustum to recommend a trachelectomy as opposed to something more conservative.

"That's when you start to realize all of the ambiguity in the world of medicine," says Craig, "and you make that judgment call." To be absolutely sure of their decision, Caroline and Craig got second opinions from NYU Medical Center and M.D. Anderson on their interpretations of the previous biopsies. Both opinions confirmed Memorial Sloan-Kettering's diagnosis, so they canceled the cone biopsy procedure and scheduled the radical trachelectomy surgery with Dr. Abu-Rustum for February 7, 2003.

	Craig Cohen

In Preparation for Surgery

Describing January as an "intense and emotional time," Caroline and Craig made two immediate health decisions in preparation for her surgery: they quit smoking and they adopted a macrobiotic diet, which is a dietary regimen that involves eating primarily grains, vegetables, and beans, and that some believe improves health and fends off disease.

"Changing to a macrobiotic diet was a way to do my part if there was anything I could do," Caroline says. "It just mellowed me out, and it gave me something to focus on. Craig was just the opposite -- active and supercharged to get all of our ducks in a row. He really picked up the slack where I couldn't."

Among the details that needed immediate attention was Caroline's health insurance. Because she was a student, Caroline had limited coverage, so Craig scrambled to switch her to a better plan in time for the operation. Even though he was able to find her insurance, the company was not convinced the trachelectomy was "medically necessary" -- they were not familiar with the procedure since so few hospitals offer it in the United States. This back-and-forth continued until the day before surgery, and Craig enlisted the help of a case manager from Memorial Sloan-Kettering named Gloria, who worked for hours behind the scenes to speed up the approval process. After what seemed like hundreds of phone calls between Craig, the insurance company, and Memorial Sloan-Kettering (several of which included Dr. Abu-Rustum), the insurance company finally agreed to pay for the surgery.

"It Was the First Question I Asked When I Woke Up"

The morning of her surgery, through "heaps of snow," they made the trek from their Brooklyn brownstone to Memorial Sloan-Kettering's main hospital on the Upper East Side. With her loved ones by her side, Caroline was wheeled into surgery.

Not until surgery is underway, once the cancerous tissue has been removed and evaluated by a type of rapid pathology called frozen section, can the surgeon determine whether a radical trachelectomy is the appropriate treatment option. If the surgical margins are clear, or "negative" (meaning that there are no remaining cancer cells present), the surgeon can proceed with the trachelectomy. If the margins are "positive" (meaning that there are remaining cancer cells), a hysterectomy is necessary. Since either outcome was possible, Caroline had to agree to both procedures before surgery began. "So when I woke up, I didn't know if I had had a trachelectomy or a hysterectomy," says Caroline. "Just going into surgery not knowing was terrifying."

After six hours of surgery, Dr. Abu-Rustum came out to tell Craig and Caroline's mother that he had removed all of the cancer and performed the radical trachelectomy. "It was the first question I asked when I woke up," remembers Caroline. Her fiancé was thrilled to tell her that they still had a chance of one day having a baby.

	Caroline and Craig

A Happy Ending: Part I

After spending three nights in the hospital, Caroline returned home to complete her recovery. Remembering some of the not-so-pleasant details of her recovery, she exclaims: "Craig, my new fiancé, had to empty my catheter!" While she was still housebound, a new semester of classes for Caroline's social work program was underway. Her mother offered to sit in on her classes with a tape recorder and record the lectures for three weeks, just so Caroline wouldn't fall behind. "I couldn't have done any of this without my mom and Craig. The two of them were there all of the time helping."

Caroline's diagnosis and treatment was also difficult for Craig. "There were times when I had some spousal neglect, there's no doubt," admits Craig. "The 'What about me?' came out. It never sounded right when I said it, but I kind of had to get it out there." Reflecting on how all of this impacted her then-fiancé, Caroline says, "Craig was invested in this so much as well. It wasn't all about me -- it was about our family that we were going to hopefully create in the future. If I'd had a hysterectomy, it would have really affected his life significantly."

Caroline's recovery went incredibly well and in May, just three months after surgery, she received her first normal Pap test result. "I had been getting these abnormal Paps for so long," she remembers. "To get one that actually that said there was nothing wrong was quite a moment. Finally."

In August 2003, six months after her surgery, Caroline and Craig got married in Vermont. She was fully healed and feeling great. In her words, "It was a happy ending."

	Caroline with their miracle baby, Jackson

A Happy Ending: Part II

Their lives returned to normal after the wedding, and Caroline continued to get encouraging feedback from Dr. Abu-Rustum during her follow-up visits. "Every time I would see him," she remembers, with a laugh, "he would ask, 'Do you want to get pregnant? Are you still on the pill?' He just wanted me to get moving and see if this works!"

Caroline and Craig had assumed it would take a long time for her to get pregnant, or that it would not even be possible. They were prepared to consult with fertility specialists. "In general, as far as they can tell, every woman's body is going to react differently to the surgery," Craig adds. To get a sense of her menstrual cycle, Caroline stopped taking birth control pills and began to monitor her cycles very carefully. "Not so much because I was dying to get pregnant at that moment but because I just didn't know what my body was doing." It was "quite a surprise" when she got pregnant in her third cycle. The couple was thrilled.

Now the couple needed to find an obstetrician (OB) equipped to handle a high-risk pregnancy. "I was calling different high-risk OBs that came recommended," says Craig, who had quickly switched back into crisis-management mode. "The first question I asked was, 'Have you ever heard of a radical trachelectomy?' Most of them said no, but they said they would be willing to learn. But then they wouldn't take our insurance."

They were eventually referred to Mary D'Alton of Columbia Presbyterian Hospital, whose practice specializes in high-risk pregnancies. In retrospect, Caroline says: "I think she had the same vigilance that Dr. Abu-Rustum had -- doing everything she could to make sure the baby come out okay and at the right time." The two doctors consulted a few times over the course of the pregnancy to make sure everything was on track, and Caroline had a very healthy pregnancy.

As the baby grew, Caroline had weekly appointments with Dr. D'Alton to check that her cervix was not opening and that the suture made during the trachelectomy remained intact. They scheduled her cesarian section delivery three-and-a-half weeks early to avoid any unnecessary strain on her cervix. Caroline and Craig's son, Jackson, was born on July 7, 2006.

"It was always assumed by Dr. Abu-Rustum that I would have to spend a majority of my pregnancy -- like six months -- on bedrest," Caroline notes. "As it turned out, thanks to the successful healing after surgery and weekly ultrasounds by Dr. D'Alton, I never had to. I was still at the office one week before the c-section."

	The First Appointment Dr. Abu-Rustum, Jackson, and Caroline

"Ta-da -- Magic Baby!"

After Jackson was born, Caroline brought her baby to her next appointment with Dr. Abu-Rustum. "It was a bigger deal than I realized," she says in retrospect. "A lot of different people at Sloan-Kettering wanted to see him. It turns out Jackson was only the third baby and the first boy to be born of a woman who had a trachelectomy. I just brought him in and said, 'Ta-da -- magic baby!'"

Now, during each follow-up appointment, Dr. Abu-Rustum examines Caroline's cervix and he remains pleased with how well she has healed. He does not expect the couple to have trouble getting pregnant again in the future. "Having a baby is sort of the proof that the radical trachelectomy works," Caroline says. "You are able to preserve your fertility and have a baby -- and it will all be a healthy experience."

In the words of Dr. Abu-Rustum, "Many women have benefited from this advancement worldwide. It is my hope that gynecologic oncologists will continue to refine this procedure to cure cervical cancer and preserve reproductive function."

"Dr. Abu-Rustum has seen me through all of this," Caroline says of their experience. "It was really such a scary time. Even now, every time I walk in to Sloan-Kettering, I get flooded with emotions of that period of time when the future was so uncertain. It is so positive to be able to bring such good news after the first couple of months of being there."

Their Advice: Seek Out All the Options

Looking back on the past four-and-a-half years, Caroline and Craig feel incredibly lucky that everything worked out so well for them. "It is just so important to seek out all those options," she says. "You've got to go to the cancer centers with the big names. That is the only way to tackle your problem in the best way."

Since the radical trachelectomy is still not a widely known surgical procedure, Caroline and Craig hope that their story will help get the word out to other women faced with early-stage cervical cancer. "When I was in the throes of it, reading message boards online, it seemed like a hysterectomy was the only option," Caroline says. "Maybe other women don't have to have a hysterectomy -- maybe they could have a trachelectomy."