Minimalist Movement: Preventing Ostomies in Colorectal Cancer

After living just a few days with an ostomy — a bag designed to catch waste through a hole created in the stomach wall — Marjorie Wassermann knew it was not the type of lifestyle she wanted to have permanently, if she could avoid it.

“I would frequently wake up in the morning to find that the bag hadn’t done its job overnight,” she recalls. Diagnosed at age 43 with a large tumor low in her rectum, Wassermann had just completed six weeks of radiation and chemotherapy to shrink her tumor before undergoing sphincter-sparing surgery, which removed the tumor but spared the muscle that allowed her to squeeze and hold stool. In order to give what remained of her bowel enough time to heal after the surgery, Wassermann received a temporary ostomy and was told that there was a 90 percent chance that the ostomy would be reversed in a few weeks.

An ostomy is a surgically created opening in the body used for the discharge of body wastes, in this case stool. Through the ostomy, surgeons leave a small piece of exposed bowel to which patients must attach an ostomy bag to catch waste. Patients with colorectal cancer may have a colostomy, an opening where the remaining large intestine (colon) is brought through the abdominal wall, or an ileostomy, an opening where the small intestine (ileum) is brought through the abdominal wall.

Although every effort is made to preserve the intestines during surgery, for some patients with colorectal cancer, a permanent ostomy may be the only life-saving option. People living with ostomies often face issues with body image and depression, odor control and sexual activity. However, in recent years, the use of neoadjuvant radiation and chemotherapy — treatment given prior to surgery — and improved surgical techniques have led to an increase in the proportion of sphincter-sparing procedures.

STANDARD TREATMENT

It is estimated that, in 2016, about 135,000 people were diagnosed with colorectal cancer, and about 50,000 people died from the disease. If the disease is caught early, when it is localized (stage 1), the five-year relative survival rate is greater than 90 percent. If the disease has spread to local lymph nodes (stage 2 or 3), the five-year relative survival decreases to about 71 percent. In cases where the cancer has metastasized or spread to other parts of the body (stage 4), the five-year relative survival is only about 13 percent.

Surgical resection is the most common treatment for colorectal cancer and typically involves removal of the tumor, some surrounding healthy tissue and nearby lymph nodes. A majority of patients with locally advanced disease will also undergo chemoradiation treatment prior to surgery to attempt to shrink the tumor, according to Johanna Bendell, M.D., director of the gastrointestinal cancer research program at Sarah Cannon Research Institute, in Tennessee.

This approach was established based on the results of a study published in 2004 that showed that patients with locally advanced rectal cancer who were treated with a combination of radiation and a chemotherapy drug called fluorouracil prior to undergoing surgery experienced improved local control of their disease and reduced toxicity. These treatments also lower the long-term risk of recurrence and mortality.

“We saw from this study that the rates of patients needing abdominoperineal resection decreased using neoadjuvant chemoradiation compared with post-surgical treatment,” Bendell says.

Abdominoperineal resection (APR) is a surgical procedure that completely removes the lower portion of the colon, the rectum and the anal sphincter, resulting in the need for a permanent colostomy. The past few years have seen advances in ostomy management, and today’s survivors have a wide variety of products to choose from, including bags designed to be compatible with athletic activity. Still, ostomy can decrease quality of life for some patients, at least temporarily.

In addition to patients having to live with the ostomy, the surgery itself is very complex and is associated with a variety of complications, according to Feza H. Remzi, M.D., director of the Inflammatory Bowel Disease Center at NYU Langone Medical Center in New York.

“When surgery with an ostomy is indicated, we have to remember that it is about life, about curing cancer,” Remzi says. “Anybody with an ostomy can do most of the things someone else can do, but if it can be avoided, it is good to avoid both the ostomy and the morbidities associated with the surgery.”

Instead of undergoing an APR procedure, certain patients may be eligible for sphincter-sparing procedures like the one Wassermann received. These procedures, called low anterior resections, are more commonly performed in patients with a tumor 6 to 10 cm from the anal verge, and in selected patients with a tumor less than 5 cm from the anal verge, according to Remzi. Preoperative chemoradiotherapy can help shrink the tumor and thereby enhance the surgeon’s ability to resect the tumor and leave more bowel in place.

MORE OPTIONS

When Marra Rodriguez, 42, was diagnosed with a massive tumor low in her rectum at age 39, only one of the physicians she spoke with believed that, through careful medical and surgical treatment, an ostomy could be temporary. Her tumor was less than 2 cm from the anal verge.

“From my first appointment with a colorectal surgeon, who would not guarantee a temporary ostomy, to what I read about the location of my tumor, everything was indicating that I would most probably live with a permanent ostomy bag. Yet, I was not willing to accept this as a final definite outcome,” Rodriguez says. “I did a lot of research and advocated for myself and found the physician who was confident that (permanent ostomy could be avoided).”

At the time of her surgery, Rodriguez had experienced a complete response to the chemoradiation, meaning there was no evidence of residual tumor. Her physician did the resection with a J-pouch reconstruction, which provides a small reservoir as an alternate way to store and pass stool, and she was given a temporary ostomy for six months to allow the area to heal.

According to Remzi, Rodriguez’s case reflects the lack of consensus within the field of rectal surgery care. Remzi is part of the OSTRiCh Consortium (Optimizing the Surgical Treatment of Rectal Cancer), a group of health care institutions that are working to improve the quality of rectal cancer care in the United States.

With today’s pathology and imaging technology, surgeons should be able to decide whether to perform an APR, or a sphincter-sparing procedure, ahead of any chemoradiation, Remzi believes. The neoadjuvant treatment simply makes the chosen surgery easier, he says.

“For a surgeon to change their mind about the procedure after radiation therapy can be misleading,” Remzi says. “That is why these procedures should generally be done at a center where they perform them frequently.”

In fact, research has shown that high-volume hospitals are associated with improved outcomes for colon cancer compared with low-volume hospitals. In addition, patients who have their surgery at a high-volume hospital are more likely to recover and go home, rather than to skilled care facilities, after surgery than people who have operations at low-volume hospitals. “If these surgeries are not done with a stringent protocol, the patient may be missing an incredible opportunity, because the tumor may bypass a treatable period,” Remzi says.

WATCH AND WAIT

Missing the window for effective treatment is also a concern for Remzi when it comes to the emerging practice of “watch and wait” for colorectal tumors.

The watch-and-wait management approach is being studied in patients with colorectal cancers that achieve clinical complete response after preoperative chemoradiation. “We have learned that some rectal tumors respond very well to radiation and chemotherapy, and by the time we remove the rectum, we find no cancer cells are left,” says Julio Garcia-Aguilar, M.D., Ph.D., chief of the Colorectal Service and Benno C. Schmidt Chair in Surgical Oncology at Memorial Sloan Kettering Cancer Center. “This experience has caused some to ask whether chemotherapy and radiation could potentially be the only treatment necessary for those selected patients with a dramatic response.”

A minority, maybe 25 to 30 percent of patients, treated with chemoradiation will achieve complete response and be candidates for this approach, Garcia-Aquilar says. And, as with any new treatment approach, more research is needed.

For example, while the appearance of a scar in place of the tumor in endoscopic examination — categorized as a clinical complete response — may suggest that the tumor is gone, in some of these cases a few cancer cells remain and the tumor may grow back.

Garcia-Aguilar and colleagues at Memorial Sloan Kettering have been using a watch-and-wait approach for years in patients with clinical complete response.

“In cases where the tumor does grow back, it usually grows back slowly, and since we see patients at frequent intervals, we can detect that growth in time to do the same operation that we would have done at the beginning,” Garcia-Aguilar says. For some, he says, that could mean undergoing surgery that preserves the sphincter; the ability to go that route will depend on the stage of the tumor before starting the neoadjuvant chemotherapy and radiation, the amount of tumor left after the chemotherapy and radiation, and how far the tumor is located from the anus (farther away means more likelihood of avoiding a colostomy).

Memorial Sloan Kettering is also conducting the only prospective, multi-institutional study on this watch-and-wait approach, but data on its effectiveness likely will not be available for another three years.

Until more is known, Remzi suggests that patients should still undergo surgical resection as a standard of care for colorectal cancer, and that they should seek treatment at centers familiar with these procedures.

ADAPTING TO LIFE

Years out from their initial diagnoses, surgeries and temporary ostomies, both Wassermann and Rodriguez have few regrets about their treatment decisions; however, both acknowledge that, although they avoided getting a permanent ostomy, there are still aftereffects from their disease.

Wassermann lives with nerve damage to her sphincter that affects her ability to sense when she is having a bowel movement.

“I found through my own experiments with avoiding certain foods that gluten is a big trigger for me,” Wassermann says. “I also have to avoid fibrous things like raw vegetables, or super-dense foods like steak.”

Rodriguez also has a semi-compromised sphincter and no longer has sacral nerve function for bowel control, resulting in some fecal incontinence “My brain does not always communicate with my J-pouch and allow me to evacuate properly,” Rodriguez says. Because of that, she has had to makes changes to her life, such as conducting daily colon cleanses to avoid accidents. “That is my way of living,” Rodriguez says. “Some people view it as an inconvenience, but it is my choice and the way I want to live. I prefer that to an ostomy.”

Both women say that one of the things that helped them through the experience was finding joy and laughter in their situation. As Wassermann says when discussing the adverse effects of her surgery, “Cancer is the gift that keeps on giving.” She and Rodriguez both work to give back, as well, through their involvement with patient advocacy groups like the Colon Cancer Alliance and Fight Colorectal Cancer.

“It is hard not to think of your mortality, but I made it my mantra to find joy in the entire journey,” Rodriguez says. “My advice to others would be to advocate for themselves, not focus on the negative and find joy in the milestones along the way.”