A Life Everlasting (17 page)

Sue Scott was just thirty-six years old in July 2012 when her doctor told her there was nothing more he could do for her: her cervical cancer had metastasized to her lymph nodes, and she had tumors all over her body.

“There must be options,” Sue said.

She was met with silence.

Radiation?

She'd already had the maximum.

Chemotherapy?

There was none that worked for her type of advanced cancer.

Sue Scott said, “Stick a fork in me. I'm done.”

Nine months earlier, on Halloween 2011, after Sue had started to noticed some vaginal bleeding, she was handed down the verdict: she had a one-and-a-half-inch tumor in her cervix. The two most common types of cervical cancer are squamous cell, which begins in the cervical lining, and adenocarcinoma, which starts in the cells that make fluids. Sue's was an aggressive adenocarcinoma that had likely been growing inside her for years.

Some cancers are caused by environmental factors, such as smoking or exposure to other toxins, and some are genetic or caused by random mutation. Sue's cancer was the result of an infection by human papillomavirus (HPV), by far the most common sexually transmitted infection out there; something on the order of fourteen million new cases occur every year.

According to the Centers for Disease Control and Prevention, there are more than two hundred kinds of HPV virus, and 90 percent
of men and 80 percent of women will contract at least one kind during their lifetimes. The good news, if there is such a thing in a disease that is so prevalent, is that most strains of HPV are deemed low-risk and do not cause cancer—just warts, a.k.a.
condylomata acuminate
, on or near the genitals, anus, mouth, or throat. But about a dozen strains of so-called high-risk HPV can cause cancer. Nearly all cases of cervical cancer, as well as most anal, oral, throat, and tonsil cancers, and a large percentage of vaginal, vulvar, and penile cancers, are the direct result of HPV infection—most commonly HPV types 16 and 18.

The U.S. Food and Drug Administration has approved three vaccines against high-risk strains of HPV: Gardasil, in 2006; Cervarix, in 2009; and, in 2014, Gardasil 9—which covers, as the name suggests, a total of nine strains. These new drugs provide excellent protection against new HPV infections, including the high-risk strains, thereby preventing as many as 90 percent of cervical and anal cancers, but they don't help patients who already have an infection. Given the size of Sue's tumor, she had probably contracted HPV before any of these vaccines became available.

Cervical cancer used to be a significant cause of death for women of childbearing age in the United States, according to the National Institutes of Health. But with the introduction of the Pap smear in the 1950s, which allows doctors to examine cells under a microscope to look for abnormalities, the frequency has dropped dramatically, since precancerous lesions can be treated or removed before they turn malignant. In other words, regular screening makes the disease rare, and highly treatable if caught early. That said, of the approximately twelve thousand women who do develop cervical cancer every year, about four thousand will die of it. Unfortunately for Sue, her cancer wasn't found until it was pretty far along.

After her diagnosis, Sue's doctors put her on a standard
three-part course of treatment for a patient with her degree of disease: external radiation—also known as external beam radiation therapy, or EBRT—in which X-rays are beamed at the cancer from outside the body (like a regular X-ray but with a much higher dose of radiation); internal radiation, or intracavity brachytherapy, in which the radiation material is put in a metal tube that is then inserted into the body, applying the radiation directly to the cervix; and finally, a course of low-dose chemotherapy.

Sue thought, “Some of everything. I guess that's good.”

When her treatment was complete, a CT scan found no detectable signs of her tumor.

But three months later, Sue Scott found herself with new and worrying abdominal pain. This time, her doctor prescribed a positron emission topography, or PET, scan, which found that her cancer not only had returned, but had spread catastrophically. Sue had tumors on her liver, her bladder, her uterus, and her abdominal wall and in the lymph nodes in her groin and chest.

What Sue hadn't known at the start of all this was that the standard course of care works for only 65 percent of cervical cancer patients. Sue was one of the 35 percent for whom it didn't work. With the results of the PET scan in hand, her doctor informed her that there was nothing he could do.

It was time to see what else was available.

Sue Scott first met with an oncologist at the National Institutes of Health, who said, “We have a chemo that we're trying on HPV cancers. We haven't had a lot of success with it yet, but we can do that for you.”

Trying to maintain a positive outlook, Sue said, “What's the success rate?”

“We're not talking cure here. We're talking slowing the growth.”

“Well, I'm talking cure. Is there anything for cure?”

At this point, Sue's mother had been, by grim coincidence, diagnosed with uterine cancer, and had had a hysterectomy. Sue paid $350 out of pocket to get a consultation with her mother's surgeon; he was her seventh doctor in nine months.

This new surgeon told Sue that, depending on what he found when he opened her up, she might need, at the least, a radical hysterectomy, which would take out her uterus, cervix, and ovaries. At worst, he discussed the possibility of something Sue had never even heard of: exenteration. As the American Cancer Society describes it, exenteration is the most extensive pelvic surgery—a procedure so drastic you can't imagine someone thought it up. It is performed when a woman has experienced a recurrence of cervical cancer, as Sue had. The surgery removes not only the reproductive organs that are excised during a radical hysterectomy, but also the vagina, bladder, urethra, and rectum. It is called a total pelvic exenteration if the surgery also includes two ostomies, or surgically made openings: one for urine, called a urostomy; and one for stool, called a colostomy.

“Basically, they would cut off my lower half and stick my legs back on,” said Sue, employing admirable gallows humor.

When Sue woke up from the surgery, she didn't know how much of her body she still had. So she asked her mother, Sharon, who was with her in the recovery room, “Do I still have my vagina?”

“You do. Your rectum and your bladder, too.”

Sue was understandably relieved—until, that is, the surgeon came in to see her. It turned out that her cancer was so extensive that there had been no point in the most debilitating surgery since it wasn't going to cure her cancer.

It was another great blow, and Sue thought she'd hit another dead end, until the surgeon said, “At this point immunotherapy is your only chance.”

“What the heck is that?”

“Basically, it's a way of enhancing your body's own immune system to fight the cancer. I don't know if there's a clinical trial for your type of cancer, but I'll look into it.”

Sue was finally in luck. Through her surgeon she learned that Dr. Christian Hinrichs, of the National Cancer Institute in Bethesda, Maryland—which is part of the National Institutes of Health—had just started an immunotherapy trial that May. This is how her first conversation with Dr. Hinrichs went:

“How many people are in your study?” Sue asked.

“Four.”

“The entire study is four people?”

“Yes.”

“Is it working for any of them?”

“It's too early to tell. We're only three months out. We have one patient for whom it seems to be working. She has had some tumor reduction. The other three have not.”

“And this person you're treating who has had some response—does she have the same kind of cancer as I do?”

“No, she has squamous cell.”

“So my best chance of treatment is in a trial with four people in which one person may be responding with some tumor shrinkage but still cancerous, and her cancer is a different type than mine?”

“That's correct. But we do believe it could work for adenocarcinoma patients as well. That is, we don't have any reason to believe it
couldn't
work; we just don't have any patients with that type in the trial as yet.”

The great well of positivity and fortitude that had gotten Sue this far crumbled in that instant, and she began to cry. Her best chance was something that hadn't worked for anybody yet. Without
any
treatment, her surgeon had said, she had probably less than a year to live. She had a dozen tumors, including one the size of a golf ball
protruding from just above her belly button that she could feel with her hand if she pressed down on it. (She had been so horrified the first time she felt it, she never touched it again.)

Despite her tears, Sue managed to ask Dr. Hinrichs to explain what the treatment entailed.

Hinrichs's boss, Dr. Steven Rosenberg, was the chief of surgery at the National Cancer Institute and a pioneer in the field of developing and treating patients with advanced cancers with gene therapy and immunotherapy. As Jerome Groopman wrote in an article called “The T-Cell Army” in the
New Yorker
in April 2012, Dr. Rosenberg “developed a strategy called adoptive cell transfer in which T cells are taken from a patient's tumor and given immune stimulants such as interleukin-2 which cause them to replicate. Then they are put back in the body.” T cells, which get their name from the thymus, where these cells originate, “are a potent type of white blood cell that destroy cells infected with microbes that they recognize as foreign.”

When Dr. Hinrichs first joined Dr. Rosenberg's group, the two men were focused on melanoma, a cancer of the skin, which, if caught early, is highly treatable and which, if not, is highly lethal. One of the processes they worked on was one in which they removed a patient's tumor and then grew huge numbers of T cells out of that tumor. In some cases, the treatment made the cancers go away and stay away.

In refining the process, the researchers wanted to identify specific tumor protein, or antigen, that the T cells could target. “What we found was that we could treat the tumors, but we also caused a lot of injury to the healthy tissue that also expressed the antigen,” Hinrichs said. (This occurred because antigens can make both a normal melanocyte and a cancerous melanocyte.) “Patients would develop severe rashes and experience transient hearing and vision problems. It made the therapy untenable.”

Hinrichs became interested in HPV-caused cancers because it
was possible to target the HPV antigen in the tumor and spare the healthy tissue. Someone who has an HPV cancer, such as Sue's cervical cancer, no longer has the virus, but the antigens remain, which are what cause the cancer. “Our best chance,” Hinrichs said,” is to target antigens that are
only
in the tumor.”

That's what the trial was engineered to do when Sue Scott arrived on Hinrichs's doorstep. Her cancer was just what he was looking for.

But nothing came easy to Sue Scott. After assessing her condition, the NIH refused to accept Sue into the trial because she was too sick. By this point she had developed blood clots in her lungs, and those had to be treated first. Then it was discovered that she had hydronephrosis—one of her kidneys was swelling with backed-up urine because a tumor was blocking the ureter that connect the kidney to the bladder. It put her at high risk for infection.

It was recommended that Sue join a chemo trial to see if chemo could reduce some of the tumors. Sue refused: she wanted the immunotherapy treatment. Chemo would sap her strength, and she wanted to be 100 percent.

The only option left was to put a stent into the ureter to prop it open, but such stents are prone to infection. If Sue developed a kidney infection when they had already knocked out her immune system—well, it could kill her.

“I don't care,” Sue said. “I have to do this treatment. I won't talk to anybody. I won't kiss anybody. Just put in the stent and trust that I won't get an infection.”

While the board at NIH reviewed her case during the fall of 2012, she sent them a handwritten letter begging to be included in the trial. She addressed it to “the kind, heart-led, wise, hard-working and (I'm guessing) dashingly good-looking team of doctors in charge of my fate. Signed, from a gal who had an unfortunate string of
events that led me to VBC (very bad cancer).” And because the review coincided with a presidential election, Sue filled the envelope with confetti and wrote “Vote ‘Yes' on question ‘Sue Scott!'”

At her next monthly check-up, her medical oncologist was extremely concerned. “You've been without treatment for over six months now,” she said. “You need to be in treatment. You can't keep waiting for this immunotherapy.”

“I have to do this,” Sue said.

“Can I be honest with you?”

She thought,
The answer to that is always no.

The doctor said, “It doesn't matter what treatment you do at this point. None of these things is likely to work.”

And that's when Sue Scott finally lost her temper.

“You've got a lot of nerve!” she said. “It matters to
me.
I know the chances of this immunotherapy working for me are slim to none. I know it hasn't worked for anybody else yet. But if this is the last good thing I can do for the next person who ends up in this horrible place—and that's what we're talking about here—then that's what I want to do.”

Sue looked over at her mother, who had joined her for this appointment as she had so many others. Her mother was so moved by what her daughter had said, she was crying.

“I guess it's your decision,” the doctor said.

In her annual Christmas letter that year, Sue wrote to her loved ones, “Even if it doesn't work for me, maybe the doctors will learn how to help the next woman who ends up here. Maybe this is the final gift I can offer the world.”