Meeri N. Kim, Ph.D.

As 2017 came to a close, Lacy Gulley had plenty to look forward to in the new year. The 31-year-old from Athens, Georgia, had been recently engaged to her boyfriend Jay, and they were busy planning their March 2018 wedding. Everything was going swimmingly — until what she assumed was a benign lump in her breast turned out to be an aggressive form of breast cancer.

Over the summer, Gulley had noticed a hard lump in her right breast. Having experienced fibroadenomas — benign, noncancerous breast lesions &mdash; in the past, she mostly ignored it. During Gulley’s annual gynecological exam in November, even her doctor didn’t seem too concerned but asked her to keep an eye on it for the next few weeks. When the lump hadn’t gone away by December, Gulley scheduled a mammogram and ultrasound.

“Although I didn’t officially get the diagnosis until January 2018, they were already 100% sure that it was cancer,” says Gulley, now 33. “I have no family history of breast cancer whatsoever, and I thought at the time that breast cancer was always hereditary, so it was very shocking. Getting that news is really overwhelming, and I had no idea what was to come.”

Because of her young age, her doctors wanted to start treatment right away. They took three biopsies, which revealed a subtype of breast cancer known as HER2 positive. Women with HER2-positive breast cancers have tumors with higher levels of a growth-promoting protein called HER2, which stands for “human epidermal growth factor receptor 2.” As a result, these cancers grow and spread more aggressively than other types of breast cancer. About one out of every five breast cancers has extra copies of the HER2 gene (known as gene amplification) that leads to an overexpression (high levels) of the HER2 protein.

Jennifer Campisano received a diagnosis of HER2- positive breast cancer in 2011, also at an early age. HER2- positive status is more common among younger patients with breast cancer, with mutation incidence at 29.9% in patients ages 15 to 29 and 25.5% in those ages 30 to 39. When Campisano was 32, she and her husband, Chris, had their first child, a boy named Quinn. When he was just 3 1/2 months old, Campisano noticed a walnut-size lump in her right breast.

After two OB-GYNs told her it was probably nothing, she eventually saw a surgeon who sent her straight to the radiology department for a mammogram and ultrasound.

“In my head, I still wasn’t thinking cancer, but the radiologist told me, ‘I’m 99% sure this is cancer,’” says Campisano, who lives in Phoenix. “After the biopsies, they called me and confirmed that it was HER2-positive breast cancer. It was rough. I had to wean my son overnight, which was really painful.”

Fortunately, the treatment landscape for this type of disease has evolved considerably over the past two decades, with the development of drugs that target the HER2 protein. Even today, treatment options continue to emerge for patients like Campisano and Gulley, who both received newer agents as part of their regimens for earlier-stage disease and remain cancer-free.

“In the past, HER2-positive breast cancer was known as a more aggressive disease with a worse prognosis than HER2-negative breast cancer,” says Dr. Janice Lu, clinical professor of medicine at the University of Southern California Norris Comprehensive Cancer Center. “But with the development and approval of five drugs now that specifically target HER2, being HER2 positive is no longer any worse for patients than being HER2 negative.”

In clinical trials, researchers are testing several other agents for HER2-positive breast cancer with a high likelihood of approval by the Food and Drug Administration (FDA). They are mostly focused on treating patients in the metastatic setting, meaning the disease has spread beyond the breast, and those whose disease is resistant to more commonly used drugs.

In 1987, oncologist Dr. Dennis Slamon at UCLA discovered that the HER2 protein was present at high levels in certain breast cancers. The protein is also found on the surface of normal breast cells, but some breast cancer cells have 40 to 100 times more HER2, which stimulates the tumor cells to divide and grow. This overexpression of HER2, which became known as “HER2 positivity,” was linked to a higher likelihood of metastasis and relapse in patients, along with a decrease in overall survival, or the length of life measured from the start of treatment.

After this discovery, Slamon and his colleagues had a novel idea: What if HER2 protein’s activity could be blocked? Shouldn’t that, in theory, halt the aggressive growth of the cancer cells? This train of thought led to the groundbreaking development and FDA fast-track approval of the first drug to target HER2 in 1998. In fact, it was the first drug to target a protein that contributes to the development and growth of any cancer: Herceptin (trastuzumab).

Herceptin is a monoclonal “humanized” antibody, a laboratory-created molecule that attaches to cancer cells, inhibits the growth factor function of HER2 and attracts attack by the immune system. In a phase 3 clinical trial, adding Herceptin to chemotherapy was associated with more responses, longer time until cancer progression and better survival in patients with metastatic HER2-positive breast cancer compared with chemotherapy alone. In 2006, it was approved with chemotherapy for use after surgery, to help prevent recurrence, in earlier-stage HER2-positive breast cancers.

Herceptin is generally well-tolerated, causing mild to moderate side effects such as muscle aches, dizziness, headache, fever/chills and runny nose. However, it does come with a small risk of cardiotoxicity — especially for women who were also treated with anthracycline chemo- therapy &mdash; which usually manifests as cardiac dysfunction, primarily a condition known as cardiomyopathy, which can lead to congestive heart failure.

“We are getting long-term data on outcomes with trastuzumab after its FDA approval 20-plus years ago, and today if women are diagnosed with HER2-positive breast cancer, we can tell them their prognosis is as good as those with HER2- negative disease,” says Dr. Sara Hurvitz, a medical oncologist at UCLA. “Although trastuzumab has leveled the playing field, it isn’t a cure for 100% of patients by any means. For early-stage cancer that recurs as metastatic disease, trastuzumab can improve outcomes and help patients live with the disease, but it does not cure, for the most part.”

More recently, patients have also benefited from a newer HER2-targeting therapy called Perjeta (pertuzumab), which was approved in 2012. Similar to Herceptin, Perjeta is a monoclonal antibody that attaches to HER2 receptors on the surface of breast cancer cells and prevents them from receiving growth signals. It targets a different area on the HER2 receptor than Herceptin, which means it can act as a complementary treatment or serve as an alternative therapy for Herceptin-resistant disease.

This drug is used in both earlier-stage and metastatic HER2-positive breast cancers.

For women with early-stage HER2-positive breast cancer, the standard of care is currently chemotherapy plus Herceptin. Typical chemotherapy regimens include AC-TH, or Adriamycin (doxorubicin) and Cytoxan (cyclophos- phamide), followed by a taxane that is given concurrently with Herceptin. Recently, it has become more common to use TCHP, which includes docetaxel and carboplatin given concurrently with Herceptin and Perjeta.

This minimizes the cardiac risks associated with Adriamcyin along with Herceptin. Patients on either regimen will end with Herceptin (and Perjeta if used with chemotherapy) after completing the chemotherapy portion, such that a full year of antibody therapy is given.

In the metastatic setting, the standard of care for initial treatment is a combination of Herceptin, chemotherapy and Perjeta. Studies have found that 15% to 25% of patients with early-stage, HER2-positive breast cancer eventually experience metastatic recurrence after initial treatment. Then, the prognosis is poor, with most recurrences involving incurable metastatic disease, although some patients can survive for many years with their cancer controlled by several available medications.

“In the metastatic setting, we’re not curing the vast majority of patients with HER2-positive disease, and resistance does occur,” says Dr. Sara Tolaney, associate director of the Susan F. Smith Center for Women’s Cancers at Dana-Farber Cancer Institute in Boston. “But patients continue to live longer because they can go from one treatment to the next. There are now multiple options to go to as resistance develops, and there are also clever ways to overcome resistance.”

In 2012, Campisano started the TCH regimen along with surgery and radiation therapy. When it looked like her cancer recurred, her doctors gave her newly approved Perjeta, along with Herceptin and chemotherapy. Less than a week after her 2018 wedding, Gulley was also treated with Perjeta in conjunction with the AC-TH regimen following her mastectomy. The agent had already been approved for more than five years to treat both metastatic HER2-positive breast cancer and early-stage disease prior to surgery, and in 2017 it won approval to be given after surgery for early-stage disease.

“I was on Perjeta for a year, and my doctors warned me about diarrhea being a common side effect,” Gulley says. “I definitely noticed that in the beginning of treatment, but my body got used to it, I guess, because at the end of the year, I wasn’t as bad. I used over-the-counter Imodium and things like that to combat it.”

With the combination of Perjeta and Herceptin, Campisano experienced very mild side effects — itchy skin and a runny nose &mdash; but they were nothing compared to how she felt during chemotherapy. Unfortunately, her scans still showed what looked like cancer after her initial treatment, so she started on Kadcyla (ado-trastuzumab emtansine, also known as T-DM1).

Kadcyla is a type of antibody-drug conjugate, an emerging class of agents comprised of an antibody linked to a highly potent anti-cancer drug. They combine the heat-seeking ability of targeted therapy with the cancer-killing power of chemotherapy. In 2013, Kadcyla was approved for patients with metastatic HER2- positive breast cancer who were previously treated with Herceptin and taxanes. Earlier this year, it gained approval for use in the adjuvant (postsurgical) setting for early-stage disease. Common side effects include fatigue, nausea, bone and joint pain, muscle pain and constipation.

In the phase 3 KATHERINE study, Kadcyla given after surgery significantly reduced the risk of invasive breast cancer recurrence or death from any cause by 50% compared with Herceptin in patients who had residual disease after neoadjuvant (presurgical) therapy. An analysis showed that of 1,486 patients in the trial, 165 in the Herceptin group and 91 in the Kadcyla group had experienced invasive disease or death. In addition, at three years, 88.3% of those who took Kadcyla versus 77% of those who took Herceptin were free of invasive disease.

Campisano took Kadcyla for almost three years. In 2016, a lung biopsy revealed that what had appeared to be cancer in her lungs was actually an autoimmune disease that can mimic cancer on scans. She was taken off treatment and finally tested cancer-free. Even if she didn’t need T-DM1, she refers to it as “a wonder drug.”

Another option in both early-stage and metastatic HER2- positive breast cancer is Nerlynx (neratinib). In early-stage disease, the drug is approved for extended postsurgical therapy after chemotherapy and Herceptin to reduce the risk of recurrence. Nerlynx is a kinase inhibitor, which blocks enzymes that promote cell growth. Specifically, it inhibits the activity of HER2 and other enzymes in its family. In a phase 3 clinical trial, 94% of those who took Nerlynx experienced no disease progression over two years versus 91% in a placebo group. Common side effects included diarrhea, vomiting and nausea.

The results from a more recent phase 2 trial showed that combining Nerlynx with a chemotherapy drug called capecitabine has an effect on patients with HER2-positive breast cancer who have brain metastases.

“Neratinib is notable because it has activity with HER2- positive brain metastases, which occurs in about 50% of patients with metastatic disease,” Tolaney says. “It already has FDA approval in the adjuvant setting for patients who have completed a year of trastuzumab, and it will likely get approval in the near future for the metastatic setting based on the results of the trial.”

Finally, the kinase inhibitor Tykerb (lapatinib) was approved in 2007 for the first-line treatment of HER2-positive metastatic breast cancer, first with the chemotherapy Xeloda (capecitabine) and later with the hormone-blocking drug letrozole for postmenopausal women with hormone-driven breast cancer that over- expresses the HER2 receptor. A 2009 study showed that adding Tykerb was associated with a 5.2-month increase in median time without disease progression compared with taking letrozole alone (8.2 months with the drug combination versus 3.0 months with letrozole only).

“Patients have a lot of options, and there are multiple new therapies in clinical trials, some of which are very prom- ising,” Hurvitz says. “Three in particular deserve mention: tucatinib, a pill that appears to be safer than neratinib and lapatinib because it doesn’t cause as much diarrhea; DS-8201, another antibody-drug conjugate with a different chemo payload than Kadcyla; and margetuximab, which is similar to trastuzumab.”

All three investigational agents have shown tremendous promise in fighting HER2-positive disease and are expected to gain FDA approval in the near future. The HER2CLIMB trial is currently investigating tucatinib, a HER2-specific tyrosine kinase inhibitor, with Herceptin and

capecitabine in patients with metastatic HER2-positive breast cancer. It can penetrate the blood-brain barrier better than antibody drugs like Herceptin and Perjeta and demonstrated a brain-specific response in five of 12 patients with brain metastases. Hurvitz expects tucatinib

to gain FDA approval within the next six to 12 months.

DS-8201 (trastuzumab deruxtecan) links Herceptin with a chemotherapeutic drug — a topoisomerase inhibitor called deruxtecan, which interrupts DNA replication in cancer cells and is “guided” more specifically to HER2-positive cells while mostly sparing normal cells.

The FDA granted this experimental antibody-drug conjugate breakthrough therapy designation, expediting its development and review, as a potential treatment for patients with HER2-positive, locally advanced or metastatic breast cancer who have been previously treated with Herceptin and Perjeta and have disease progression after T-DM1. In a phase 1 study, 54.5% of HER2-positive women treated with DS-8201 saw their cancer respond to the drug.

“DS8201 is an up-and-coming drug that everyone is very excited about. It delivers a different payload into the cancer cell than TDM-1 and also uniquely allows for the bystander effect,” Tolaney said. “This means that some of the drug that enters one cancer cell can pass through its cell membrane into neighboring cancer cells, which then kills them.”

A more recently studied monoclonal antibody, margetuximab, has been described as an optimized version of Herceptin. A section of the antibody was engineered to better engage the immune system in fighting the disease. In the phase 3 SOPHIA trial, patients with metastatic HER2-positive breast cancer who took the investigational drug with chemotherapy had a median progression-free survival of 5.8 months compared with 4.9 months for those treated with Herceptin and chemotherapy.

“These new drugs are rising stars in the metastatic setting, and many other agents are currently being tested,” Lu says. “Patients with HER2-positive breast cancer should discuss with their doctors what is the standard of care, next steps for treatment, any clinical trials that are potentially available and, of course, possible side effects.”

Although they continue to adjust to a new normal after cancer, Gulley and Campisano are grateful to be cancer-free and hopeful about the growing availability of treatment options for their disease. Gulley had a left-side mastectomy in February of this year, after a mammogram revealed calcifications in her remaining breast. She was also put into a chemical menopause at age 33, which means hot flashes, night sweats and fatigue.

“After my wedding, instead of going on a honeymoon, I started my chemotherapy. This has all been such a whirlwind,” Gulley said. “Being newly married, it’s really hard. Menopause has a lot of bad side effects, sexually and otherwise. That fear of recurrence is always there too, but I’m so thankful for the two medicines that were available to treat me.”

Campisano also went through early menopause, induced by chemotherapy. She eventually emerged from that menopause and, surprisingly, became pregnant with her second child. But the chaos of having a newborn, then a cancer diagnosis and treatment, followed by another baby left her physically and mentally exhausted.

“I don’t think I had time to process anything in the beginning. My husband and I had not even been married three years when I was diagnosed, and today I’m left with range-of-motion issues, body image issues, a bilateral mastectomy and post-traumatic stress disorder,” Campisano says. “I know that we don’t have a cure for metastatic HER2-positive breast cancer, but it’s wonderful that these new drugs do work for some people.”

Articles

Two decades ago, a patient with HER2-positive breast cancer had a single targeted drug option. Now a plethora of new and emerging treatments fill the landscape.

From One to Many: The Growing Treatment Landscape of HER2-Positive Breast Cancer

In mid-2013, Betty Strommer experienced a few strange and concerning health episodes, which she initially brushed off as minor or one-time issues. One morning in June, when the weather had finally warmed up in her hometown of Clara City, Minnesota, she decided to ride her motorcycle to work instead of driving her car. Strommer got up early to put on all her protective gear and was about to take off when an extremely painful wave of acid reflux hit her hard. Her esophagus burned so badly, she had to go back inside and lie down.

During the months that followed, she noticed that she grew short of breath more easily. Going up and down stairs left her winded, and her usual training for the Susan G. Komen 3-Day, a 60-mile fundraising walk — an event she had successfully completed five times in the past &mdash; felt like a herculean task. But as a breast cancer survivor, Strommer felt especially determined to go through with it.

“I would be going on my walks, and it was such a struggle to walk any amount of distance,” says Strommer, now 62. “I would sweat so bad, and I’m really not a sweater. I just don’t sweat very often, and during that summer, it dripped off my face.”

After Strommer completed the fundraiser in August, her right leg developed bothersome swelling that wouldn’t go away. Finally, she made a doctor’s appointment for September, assuring her partner and children that it wouldn’t result in anything serious. Two days later, she received a diagnosis of a second cancer, acute myeloid leukemia (AML).

“I remember wishing that my doctor would leave the room so I could just cry. It was not what I was expecting,” she says. “I knew that sometimes when you have breast cancer, you might get another type of cancer, but I was thinking maybe uterine cancer or something in my thyroid. I didn’t think it would cause me to get leukemia.”

A growing number of survivors like Strommer are finding themselves with a second cancer, which can be unrelated or random but becoming increasingly common as more people are living longer and surviving their first cancer. But the two diseases can also be somewhat related, sharing the same risk factors — for example, lung and bladder cancer are more common in people who use tobacco &mdash; or caused by the treatment for one of the cancers.

It’s different from disease recurrence, which happens when the cancer comes back. Second cancers are associated with many risk factors, such as inherited genes, cancer cells that remain in the body after treatment, smoking, diet, weight, heavy drinking and environmental toxins.

Another risk factor involves treatments, such as certain chemotherapies and radiation, given to treat the first cancer. Strommer’s doctors told her that having chemotherapy and radiation in 2006 for breast cancer likely led her to develop AML.

Survivors have a small increased risk of developing a second cancer, according to the American Cancer Society. Ongoing research is looking to prevent second cancers by delivering chemotherapy and radiation with more precision and identifying those individuals most at risk. However, it’s crucial that survivors understand that cancer can recur and a new cancer can arise.

“The biggest thing to understand from a patient perspective is that just because one bad thing has happened to you, it doesn’t mean that more bad things will not happen,” says Dr. Aaron Seth Rosenberg, an assistant professor of hematology and oncology at the University of California, Davis Comprehensive Cancer Center in Sacramento. “It’s a small but real number of patients who go on to develop second malignancies. So the risk is there, but you can’t affect that risk by worrying about it, and all that we can do is monitor our patients closely.”

Over the past 30 years, the number of cancer survivors has increased fourfold. Today, roughly 17 million Americans live with a history of cancer, according to a report from the American Cancer Society. By 2030, that number is anticipated to rise to more than 22 million.

These individuals must live with a new normal that may include long-term side effects, financial hardships, possibility of recurrence or a second cancer. Survivors can work with their health care team to create a survivorship care plan — a record of a person’s cancer and treatment history, as well as any checkups or follow-up tests that may be needed in the future.

The likelihood of facing a second cancer varies depending on factors such as the type of cancer first diagnosed, treatment received, age at diagnosis and lifestyle choices. For instance, children and young adults have a higher risk of second cancers related to treatment with radiation and chemotherapy compared with older adults.

“With the increasing number of cancer diagnoses, as well as the improved prognosis for many patients, second cancers are more common today than in the past,” says Dr. Lindsay Morton, who holds a doctorate in epidemiology and is senior investigator in the Division of Cancer Epidemiology & Genetics at the National Cancer Institute (NCI). “In fact, about one in five cancers diagnosed today is diagnosed in a cancer survivor.”

Researchers from Texas conducted a study, which was published in JAMA Oncology, that analyzed data from NCI’s Surveillance, Epidemiology and End Results (SEER) Program to see the prevalence of prior cancer among individuals newly diagnosed with cancer. Based on 740,990 cases from 2009 to 2013, 18.4% of all newly diagnosed cancers represented a second or subsequent cancer. A quarter of adults ages 65 and older and 11% ages 20 to 64 had a history of cancer when given their diagnosis.

Additional findings show a link between certain types of chemotherapy and blood cancers, most commonly AML, acute lymphocytic leukemia (ALL) and myelodysplastic syndrome (MDS). In particular, various alkylating agents, platinum compounds and topoisomerase 2 inhibitors have been associated with a fivefold increased risk of therapy-related MDS or AML. Alkylating agents such as mechlorethamine and cyclophosphamide affect the cancer’s ability to multiply and are most effective for leukemia and solid tumors. Platinum-based drugs like cisplatin and carboplatin inhibit DNA repair and/or synthesis in cancer cells. Topoisomerase 2 inhibitors stop cells from repairing DNA and have been used to treat breast, lung, testicular and other types of cancer. For Strommer’s breast cancer, her doctors administered the AC-T chemotherapy regimen, which consists of Adriamycin (doxorubicin) and cyclophosphamide, followed by Taxol (paclitaxel). Her doctors told her that it likely contributed to her development of AML.

Late last year, Morton and her colleagues reported in JAMA Oncology about a substantial expansion in the number of patients who are at risk of therapy-related leukemia in the modern treatment era. From 2000 to 2014, patients in the SEER registry database treated with chemotherapy for solid tumors (except for colon cancer) experienced an increased risk of therapy-related MDS or AML. The researchers also noted a rise in the proportion of patients treated with a known leukemogenic agent (alkylating agent, platinum compound or topoisomerase 2 inhibitor), from 10% during 2000 to 2001 to 81% in 2012 to 2013.

Morton emphasizes that developing MDS or AML after chemotherapy remains rare: “In most of the patient populations we studied, the risk of developing therapy-related leukemia was less than 1% at 10 years,” she says.

“The benefits of cancer treatment typically far outweigh the risk of developing a new cancer due to that treatment.”

Although chemotherapy is a greater-known risk factor, radiation therapy can also cause leukemia, MDS and solid tumor cancers. The amount of risk depends on the dose of radiation, the specific region of the body that is treated and the age of the patient at the time of therapy.

Radiation therapy-associated leukemia and MDS most often occur within several years of treatment, generally five to nine years later. It usually takes at least 10 years — sometimes more than 15 years &mdash; for radiotherapy-related solid tumors to develop.

“Therapy-related malignancies are part of why we emphasize regular follow-up and survivorship in patients. But one of the things I stress upon my patients is that we have to deal with the cancer in front of us,” Rosenberg says. “If we don’t treat you with the best therapies avail- able because there’s a risk five to 10 years down the line, we’re ignoring the short-term dangers of the cancer that’s currently in front of us.”

An active area of research in the field of second cancers is finding a way to identify which survivors are most at risk, so they can be monitored more closely for new disease. One promising method is a peripheral blood test for a recently identified disease entity called clonal hematopoiesis of indeterminate potential, or CHIP. It is defined as the presence of preleukemic mutations — those that pave the way to developing leukemia &mdash; in an otherwise healthy person who does not have cancer.

“Doctors and scientists are starting to understand that there may be a small subset of patients who have an increased risk of therapy-related leukemias that may be genetically based,” says Dr. Guillermo Garcia-Manero, a professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center in Houston. “The tests are currently in clinical trials, but one day, they could allow us to come up with effective identification and preventive strategies for patients.”

Garcia-Manero specializes in therapy-related myeloid neoplasm (t-MN), a term proposed by the World Health Organization to cover the spectrum of malignant disorders previously described as therapy-related MDS or AML. In 2017, he and colleagues published a study in Lancet Oncology in which they compared the prevalence of CHIP between patients who developed t-MNs and those who did not. More than 70% of the t-MN group had CHIP at the time of their initial cancer diagnosis, before ever having t-MN, compared with 31% of the control group. “Until not too long ago, we thought that this process of developing t-MN was totally random. We didn’t know why some patients with breast cancer never get this kind of therapy-related leukemia, (whereas) others do,” Garcia-Manero says. “CHIP has really transformed this field. Now, for a significant percentage of patients, you can predict who has a higher risk of therapy-related disease.”

CHIP is rare, especially at a young age, but the prevalence rises to roughly 10% among individuals ages 70 to 80. Liquid biopsies, which are becoming more common at cancer centers, could also be used to identify patients with CHIP and assess their risk of t-MN.

Cancer survivors can lower their overall cancer risk by living a healthy lifestyle, which includes getting regular exercise, eating a healthy diet, avoiding tobacco and limiting alcohol use. Individuals should also keep follow-up appointments and let their doctors know if any symptoms or problems arise. Signs of a second cancer include fatigue, loss of appetite, bleeding, feeling like bones ache and vision changes.

Thinking back to that fateful summer, Strommer realizes that she should have seen a doctor sooner, right after she noticed something off about her health. But after six grueling months of treatment for AML, which involved chemotherapy, a bone marrow transplant on her birthday and multiple near-death experiences — two fungal infections and fluid in her heart &mdash; she made what doctors call a miraculous recovery and was well enough to go home in April 2014. She still takes Nexavar (sorafenib), a kinase inhibitor originally used for kidney cancer and showing promise for some patients with AML &mdash; depending on the results of her next bone marrow biopsy, her oncologist may take her off it after six years. Strommer realizes that not everyone beats the odds as she did &mdash; she often encounters those patients at her new job at the local hospital’s cancer center. She switched departments after her recovery, driven by a desire to help others going through what she once did. She credits a positive attitude, her seven grand- children and the grace of God for helping her survive the hardest time in her life.

“When the doctors said I only had a 1% chance to make it, it’s hard to understand why God chose me to win the battle, yet others who had someone to live for lost their battle,” Strommer says. “There were so many times I’d sit in my room in the hospital and didn’t know whether I would live or die, but I was really at peace with it. All I can say is, I’m a firm believer in miracles.”

Certain oncology treatments can raise the risk of developing yet another cancer.

Living With a Secondary Blood Cancer

More than 25 years have passed since Ann Fonfa, 71, first received a diagnosis of breast cancer. After a grueling series of treatments and recurrences, she can finally say she’s cancer-free. Yet, Fonfa and countless other survivors experience a problematic and dreaded complication of breast cancer treatment that significantly lowers their quality of life.

Lymphedema, a buildup of lymph fluid in the soft tissues just under the skin, affects roughly 30% of individuals who undergo surgery or radiation for breast cancer. Symptoms include swelling — usually in the arms or legs &mdash; along with feelings of heaviness or tightness, a restricted range of motion, recurring infections and discomfort. Having an oversize limb can lead to body image and self-esteem issues, and clothes or shoes may no longer fit.

In 1993, Fonfa noticed swelling in her left arm almost immediately after a lumpectomy and removal of her axillary lymph nodes, which are located in the armpit. When she showed her doctor, he responded dismissively that she had lymphedema — it was common and had no cure. Before her surgery, she was not told that the condition could be a side effect, and Fonfa remains resentful.

“My left side doesn’t get as strong as my right side, even with exercise. It has been permanently harmed and will always be weaker,” says Fonfa, a resident of South Florida. “I didn’t even want to hold my baby grandson at first because I was afraid of dropping him.”

Judy Cooper, a 61-year-old Los Angeles resident who in 1996 received a diagnosis of a very aggressive form of breast cancer, had a similarly disappointing experience. Despite a poor prognosis, she survived inflammatory breast carcinoma after an intense treatment regimen that included multiple surgeries and courses of chemotherapy, a stem cell transplant and radiation. Four years later, when visiting her oncologist, she asked him about the swelling in her right arm.

He said, “Oh, that’s just lymphedema,” Cooper recalls. Only when Cooper asked for details did she learn that lymphedema is a relatively common — and incurable &mdash; side effect of breast cancer treatment. “I was extremely upset that, after working with numerous doctors and health care professionals battling cancer for four years, no one had ever made me aware of this condition,” she says.

Her lymphedema began with minor swelling that progressively worsened. Despite several rounds of intense physical therapy over the years to reduce the swelling and heaviness in her arm, she developed recurring infections that caused high fever, painful and hot swelling, and nausea. After going through 10 debilitating infections that required multiple hospital visits and IV antibiotics, Cooper had lost hope for a normal quality of life.

Both Fonfa and Cooper managed their lymphedema as best they could with the recommended treatment — massage, skin care, exercise and compression garments such as bandages or a lymphedema sleeve or stocking &mdash; but their condition stayed more or less the same for decades. They were disheartened, knowing that despite surviving cancer, they would have to cope with the discomfort and distress of lymphedema for the rest of their lives.

Over the past several years, as more patients spoke up and research interest in lymphedema rose, new treatment options began to emerge in the U.S. In particular, two surgeries — lymphovenous bypass and vascularized lymph node transplant, or transfer &mdash; have grown in popularity, because they relieve symptoms that do not respond to other treatments. Lymphovenous bypass is an intricate microsurgery technique that builds connections between lymphatic vessels and veins, allowing fluid to get around the damaged area. Vascularized lymph node transplant replaces lost lymph nodes, along with their associated microvessels, with those from elsewhere in the body. The procedures aren’t labeled curative and remain limited to a handful of cancer centers, but early results appear promising.

“This procedure has alleviated a lot of the fear and anxiety I’ve had about my lymphedema. My arm looks and feels better than it has in 19 years. I consider it a miracle,” says Cooper, who underwent lymphovenous bypass in January. “It’s not a cure, but it has made such an improvement in my outlook on life and optimism for the future that I want people who suffer from lymphedema to be aware that there is help out there.”

Over 250 million people worldwide have lymphedema, mostly as a result of parasitic infection from roundworm. However, in developed countries, the leading cause is damage to the lymphatic system because of cancer treatment. The condition can arise after surgery or radiation treatment for nearly any type of cancer but is most commonly linked to breast, prostate and pelvic area cancers (such as bladder, penile, testicular, endometrial, vulvar and cervical cancers), lymphoma, melanoma, and head and neck cancers.

The lymphatic system consists of a complex network of vessels, tissues and organs that helps the body maintain fluid balance and defend against infection. Lymph fluid travels through the system similarly to how blood travels through the circulatory system. Lymphedema occurs when lymph fluid can no longer flow normally due to damage or a blockage in the system. Fluid builds up in the tissues and causes regional swelling; consequently, patients feel discomfort, heaviness, tightness and a loss of mobility. They also have a higher likelihood of infection from cuts, scratches or insect bites, because their lymph fluid is unable to effectively filter out bacteria and toxins.

Patients who undergo surgery that includes removal of lymph nodes or have radiation therapy to the area where lymph nodes are located have a higher risk of lymph- edema. The risk increases with the number of lymph nodes affected and decreases with the removal of just sentinel lymph nodes (the first few lymph nodes into which a tumor drains). Other risk factors include being overweight or obese; slow healing of skin after surgery; a tumor that affects or blocks the left lymph duct or lymph nodes or vessels in the neck, chest, underarm, pelvis or abdomen; and scar tissue in the lymph ducts under the collarbones, caused by surgery and/or radiation therapy.

Most lymphedema develops within three years of cancer treatment, but it could appear within days for some people, as it did with Fonfa. The condition is typically diagnosed by physical exam, such as measuring changes in the circumference or volume of limbs, although imaging techniques can also be used.

“Sometimes patients report signs or symptoms to us, such as heaviness or fullness. Rings, watches and jewelry feel tight,” says Dr. Mark Schaverien, a plastic surgeon at The University of Texas MD Anderson Cancer Center in Houston. “We also have a lymphedema screening program, where the volume of patients’ arms is measured using a noninvasive device called a perometer before and after surgery for breast cancer. There are ways to catch swelling before it becomes clinically apparent, and the earlier we can catch lymphedema, the better the outcomes of treatment.”

At MD Anderson, all patients whose lymph nodes are removed as part of breast cancer surgery receive educational counseling from a physical therapist specializing in lymph- edema. They learn about arm exercises to help with range of motion, skin care, massages to move the lymphatic fluid and options for compression therapy. If their lymphedema persists, surgery becomes a viable choice.

Three surgical procedures exist for lymphedema, which can also be combined to improve effectiveness: lymphovenous bypass, vascularized lymph node transplant and suction-assisted lipectomy, also known as liposuction. Lymphovenous bypass, which connects lymphatic vessels to small adjacent veins to bypass the damaged area, is a minimally invasive procedure with 1- to 2-centimeter-long incisions. The surgery takes two to three hours under general anesthesia, with a hospital stay of less than 24 hours. Risks are minimal, Schaverien says. The surgery was first described by Japanese surgeon Yukio Yamada in 1969.

“Bypass tends to work best for folks with relatively early-stage lymphedema. The reason is because bypass does rely on the native lymphatic system to be partly working, since it is a plumbing-type procedure,” says Dr. Ketan Patel, surgeon and director of the Center for Advanced Lymphedema Surgery and Treatment at Keck Medicine of the University of Southern California. “You need water going through the pipes if you want to manipulate the plumbing.”

More advanced lymphedema requires vascularized lymph node transplant, sometimes combined with lymphovenous bypass. The procedure was pioneered by French surgeon Corinne Becker in 1991. Healthy lymph nodes are harvested from the abdomen (which can be performed laparoscopically), neck, trunk or groin area and reattached to the limb affected by lymphedema via microsurgery. Lymph node transplant, a more complex procedure, can take six to eight hours under general anesthesia and requires a hospital stay of around four days. Recovery takes roughly three to four weeks.

A major risk of lymph node transplant is that it simply may not work for everyone, for reasons yet unknown. Schaverien says about 1% of transplants fail to reestablish circulation. Additional risks depend on where in the body the harvest occurred. For instance, lymph node removal from the abdomen involves risks that come with any abdominal surgery, such as bowel obstruction, hernia, intra-abdominal injury and ileus; however, there appears to be no risk of causing lymphedema from where the lymph nodes are taken.

Taking lymph nodes from under the arm, groin or neck may cause lymphedema in those areas, so surgeons today sometimes employ an innovative technique called reverse lymphatic mapping. This strategy involves injecting different-colored dyes into the body to determine which lymph nodes can be safely removed. Lymph nodes draining the limb are avoided, while those draining the trunk may be harvested.

“I first described and developed reverse lymphatic mapping, which allows us to identify and avoid the lymph nodes draining the arm or leg,” says Dr. Joseph Dayan, a reconstructive surgeon at Memorial Sloan Kettering Cancer Center in New York City. “We use lymph nodes from inside the abdomen that do not drain any extremities, so there is no risk of causing lymphedema.”

Dayan has performed lymphedema surgery for about 10 years and has over 300 cases under his belt. During a microsurgery fellowship in Taiwan, he was taught the procedures by plastic surgeon Ming-Huei Chen at Chang Gung Memorial Hospital, which has served as a learning and innovation hub for lymphedema microsurgery. Dayan brought his expertise back to the U.S. and later performed one of the first lymph node transplants here. Patel was also taught the two procedures by Chen.

“One of the problems is that lymphology as a specialty is not taught in U.S. medical schools, and lymphedema itself isn’t even talked about as much to medical students,” Patel says. “So many people have learned the procedures in Taiwan, and now there’s a handful of us — 15, maybe 20 surgeons &mdash; who do a reasonable volume of this surgery. But we’re teaching others to do it.”

Patel sees about 400 to 500 patients with lymphedema per year, including Cooper, on whom he performed lymphovenous bypass. He sees signs that the field is growing exponentially in popularity to meet this high demand: More centers are advertising for the procedures, more practices want to incorporate them into their services and more trainees are interested in learning them.

The last surgical option for patients with highly advanced lymphedema is suction-assisted lipectomy. Candidates for this procedure have, along with lymph fluid, a large buildup of fibroadipose tissue to be removed. The minimally invasive procedure takes one to two hours, with a hospital stay of less than 24 hours. Patients must continue to wear compression garments right after surgery to prevent a recurrence.

“Most think of lymphedema as a plumbing issue. If a breast cancer patient had lymph nodes removed under their arm, there will be a blockage up there — but that’s really only part of the problem,” Dayan says. “There’s a whole other disease process that is triggered in some patients, where the immune system spews out harmful chemicals that scar the lymphatic vessels and lead to fat buildup. Massage and compression can relieve some things, but they cannot get rid of fat and scar tissue buildup.”

Although some evidence supports the effectiveness of lymphedema surgery, questions remain regarding which patients will benefit, how often the procedure works and why. As a result, insurance companies consider the procedures investigational and do not universally cover them. Dayan says that most lymph node transplants have been covered, but lymphovenous bypass tends to be more of a gray area.

Many experts believe the future of lymphedema research lies in prevention rather than treatment. Because the main risk of developing cancer-related lymphedema is the removal of lymph nodes, doctors have been exploring ways to reduce the damage to the lymphatic system while treating cancer, such as removing 20 to 30 axillary lymph nodes instead of 40 to 50 or forgoing axillary node dissection.

“Many patients don’t need to have axillary node dissections, and we can also reduce the number of patients who have sentinel node biopsies,” says Dr. Sheldon Marc Feldman, chief of breast surgery at Montefiore Health System. “The reason for doing lymph node removal or biopsies is for staging of breast cancer to help us determine whether it has spread or not. That’s still important, but we can also learn a lot from a needle biopsy.”

Feldman has also performed a novel preventative procedure called LYMPHA (lymphatic microsurgical preventive healing approach) in about 50 patients in the United States since 2013 and continues to offer it at Montefiore, as well as teaching it to other breast surgeons across the country. The microsurgical tech- nique occurs at the time of lymph node removal and essentially involves a patient undergoing lymphovenous bypass ahead of time. Instead of tying off the lymphatic vessel after lymph node removal, Feldman connects it directly to a blood vessel so the lymphatic flow can continue. A study he conducted in 37 women at high risk of lymphedema found that nearly 90% avoided the condition after undergoing LYMPHA, whereas a control group whose members did not undergo the procedure had a 40% rate of lymphedema.

“Prevention is always better than treatment in any disease process. What’s very helpful for patients to know is, if they are going to have breast cancer surgery and their lymph nodes removed, they should understand why the lymph nodes are being removed,” Feldman says. “It used to be a very standard thing, but in some situations, it isn’t going to be helpful.”

Patients should ask about alter- natives to lymph node removal, including preoperative ultrasound and needle biopsy, or consider sentinel node biopsy rather than a complete axillary node dissection. They can also do research on more novel, investigational techniques for lymphedema prevention, such as LYMPHA.

Fonfa hasn’t thought about getting surgery for her lymphedema, which she mostly keeps under control with a healthy diet and exercise. Cooper realizes that the lymphovenous bypass wasn’t a cure — she still wears compression sleeves and performs lymphatic drainage on herself every day with the help of a machine &mdash; but her condition is much improved.

“I was extremely skeptical before meeting with Dr. Patel, because every doctor with whom I had ever consulted told me there was no surgery for this. But with the encouragement of family and friends, I did talk to him, and for the first time, I felt like I had some hope,” Cooper says. “Now, the word ‘hope’ is back in my vocabulary, and I hope this surgery becomes more well-known and brings relief to others.”

Several new surgical options can help reverse or prevent lymphedema by keeping lymph fluid moving through the body.

Back in Circulation from Lymphedema

Peg Myrick has always been an optimist, living every day to the fullest. But when she was just 36, life threw her a curveball — a diagnosis of stage 4 colorectal cancer &mdash; that challenged her positive outlook on the future.

Six months earlier, Myrick had started experiencing abdominal pain, diarrhea, irregular bowel movements and blood in her stool. She visited her local hospital’s emergency room, where doctors performed a blood test and CT scan but found nothing alarming. It turned out that the cancer in her colon and rectum was too low for the scan to capture.

“I had been having symptoms for months, but my primary care physician told me that I was too young for colorectal cancer,” says Myrick, a resident of Richmond, Virginia. “They chalked my symptoms up to colitis due to stress, because I had just gotten a new job as an assistant principal at a high school.”

Finally, a colonoscopy in October 2016 revealed a large tumor stretching from the bottom part of her colon to the top third of her rectum. The cancer had also spread to her lymph nodes and throughout 80% of her liver.

Despite the shocking news, Myrick didn’t give up. She sought treatment at the Johns Hopkins Hospital in Baltimore, beginning with an aggressive chemotherapy regimen to try to shrink her cancer so it would become operable — a strategy not typically used with a tumor so extensive. The three chemotherapy drugs &mdash; irinotecan, oxaliplatin and fluorouracil (5-FU) &mdash; each cause potentially troublesome side effects. For instance, Myrick experienced cold sensitivity from oxaliplatin to the point that drinking anything with ice felt like swallowing shards of a Christmas ornament.

 “I could only tolerate five rounds of oxaliplatin because the side effects were too much. I had neuropathy (numbness) in my hands and feet, along with cold sensitivity,” she says. “I stopped because, as someone who was diagnosed at 36, I didn’t want the neuropathy to become permanent.”

Wes Hensel, who in December 2017 received a diagnosis of stage 3b rectal cancer at age 34, also experienced numbness in his toes, which occurred following his sixth round of oxaliplatin. After discussing the benefits and risks of the drug with his doctors, he decided to stop the oxaliplatin infusions but continued his chemotherapy with fluorouracil. Like Myrick, Hensel’s young age was an overwhelming factor in his decision.

“My toes on both of my feet were basically numb, and I couldn’t risk getting neuropathy in my hands,” says Hensel, a Tucson, Arizona, resident whose rectal tumor went undiagnosed for four years. “I’m 35 years old, and I still need to work. I’m an engineer, so I need to be able to work at a computer and type.”

Peripheral neuropathy — injury to the nerves that causes weakness, numbness and pain &mdash; is a common side effect of oxaliplatin. Studies have found that the chemotherapy drug can cause nerve damage that may worsen months after treatment ends and sometimes even be permanent.

Although gastrointestinal (GI) complications are common problems for patients with any kind of cancer, individuals with GI cancers may experience a unique set of side effects due to the treatment type and tumor location. Patients who have had surgery for esophageal cancer can experience dumping syndrome, a condition in which food moves too quickly from the stomach into the small bowel. Surgery for pancreatic cancer can lead to longer-term side effects, such as problems digesting food and changes in taste.

Some side effects can be managed through medication, diet and rest. For example, as a proactive measure, Myrick and Hensel were each given three different antinausea drugs before their chemotherapy sessions. But other side effects, such as oxaliplatin-related neuropathy, lack an effective remedy, making ongoing surveillance and patient reporting of symptoms very important.

“Most patients who undergo GI surgery will have some lingering side effects. I explain to patients that it’s very rare that, after an operation, your GI system feels and works exactly the same,” says Dr. Thomas Clancy, associate chief of the Division of Surgical Oncology at Brigham and Women’s Hospital and co-director of the Pancreatic and Biliary Tumor Center at Dana-Farber/Brigham and Women’s Cancer Center in Boston. “There may always be some side effects, but the questions are: Can they be anticipated, will they be tolerable and can they be managed?”

The three most common types of treatment for patients with GI cancers are surgery, radiation and chemotherapy. More recently, targeted therapy and immunotherapy have been used to treat certain GI cancers. The types and sequence of treatment differ depending on the location and size of the tumor and whether it has spread to other parts of the body.

Surgery to remove the tumor is the most common treatment for all stages of colon, rectal, esophageal, gastric and small intestine cancers that have not spread. In general, the more complex the procedure, the greater the risk of side effects, and there are a host that can happen with surgery for any health problem.

An issue unique to GI cancers is that, after removal of a tumor in the colon or rectum, the new connections made in the digestive system may not hold together properly, causing a leak that may lead to severe abdominal pain, fever, constipation and loss of appetite. If infection occurs, more surgery could be required. Patients should try to maintain their weight before surgery, since preoperative weight loss has been associated with an increased risk of leakage. Also, the findings of multiple studies show that smoking is a risk factor for leakage, since this affects wound healing.

Adhesions, or scar tissue in the abdomen that causes organs or tissues to stick together, can lead to twisted or blocked bowels (termed “bowel obstruction”). This problem, too, could require surgery, but can often be managed with resting the intestines for a few days by not eating, receiving intravenous fluids and sometimes using a tube through the nose into the stomach to remove the fluid normally secreted in the stomach. One way surgeons can prevent adhesions is by implanting bioresorbable membranes to act as a barrier between the organs of the abdomen.

Some patients have a colostomy procedure that brings one end of the large intestine out through an opening in the abdomen, called a stoma; waste collects in a bag outside the body. An ileostomy is a similar procedure that connects the lower part of the small intestine to the abdominal wall. Each requires lifestyle adjustments to find the best way of adapting for each individual.

Both Myrick and Hensel have permanent colostomies, which can bring their own set of complications. Myrick has had one full blockage and two partial blockages, which can be caused by a buildup of food in the stoma. Hensel has experienced skin irritation around his stoma but, fortunately, hasn’t had any blockages.

“In the situation of an ostomy, we recommend that patients stay hydrated, because you want to avoid constipation and obstructions. That requires some teaching and trial and error, such as finding out which foods work best for them,” says Dr. Syed Kazmi, an assistant professor at the University of Texas Southwestern Medical Center. “We can also give them stool softeners or laxatives so they don’t get obstructions, which can be dangerous and life-threatening at times.”

Aside from the physical aspects, ostomy surgery can affect mental health and body image. Patients commonly have anxieties about accidents, odor or noise soon after the procedure.

But in many cases, they learn to live with their new normal through training, education and discussion. Myrick and Hensel don’t feel nearly as restricted as they anticipated and mostly continue to live as they did before the surgery.

“Ostomy is a difficult thing. It’s a change in the appearance of the body, and it’s hard to imagine for someone who has never had something like that,” says Dr. Afsaneh Barzi, an associate professor of clinical medicine at Keck Medicine of the University of Southern California. “But I think people learn how to get comfortable with it after a while. It’s something that nobody wants, but ... the alternative (is) having the cancer in you or dying from the cancer.”

Removing certain parts of the GI tract can mean that patients must take supplements to replace enzymes that are no longer produced or vitamins that cannot be absorbed. Many patients with pancreatic cancer who undergo surgery cannot produce the enzymes needed to digest food properly and must take pancreatic enzyme pills. Those who have had part of their stomach removed need to have their vitamin blood levels tested regularly and should take vitamin B12 supplements.

“Patients with upper GI cancers shouldn’t always focus on carbs, proteins and fats but, rather, micronutrients like zinc, iron, B12 and copper, which should be monitored very closely,” Kazmi says. “They become deficient over time because your stomach makes molecules that help absorb these micronutrients.”

Several GI cancers respond well to chemotherapy, usually when combined with surgery or radiation. Among these are colorectal, pancreatic, anal, esophageal, stomach, small intestine and gallbladder cancers and intrahepatic cholangiocarcinoma, says Dr. Benjamin Weinberg, a GI cancer specialist at Georgetown Lombardi Comprehensive Cancer Center in Washington, D.C.; however, the effectiveness of chemotherapy is more limited for liver cancer.

Most chemotherapy agents produce side effects such as fatigue, nausea, loss of appetite, hair loss, constipation and diarrhea. Receiving antinausea medications before chemotherapy has helped patients like Myrick and Hensel, and some hospitals are exploring alternative therapies like medical marijuana. The results of a 2016 review paper looked at the effectiveness of medical marijuana for symptom relief in patients with cancer and showed that it has the potential to help combat nausea and vomiting. However, there aren’t enough large studies in humans to recommend the drug as a first-line antiemetic.

“Medicinal marijuana can be effective in terms of controlling nausea and loss of appetite, but I warn people that those who have curable disease should likely stay away from it, since we don’t know what the long-term effects are,” Barzi says. “But for those who have advanced or metastatic disease, I do recommend medicinal marijuana, and there (is a) prescription-grade (cannabinoid) that helps.”

Some side effects are unique to certain chemotherapy agents, such as neuropathy in patients taking oxaliplatin. The drug can be combined with others to treat colorectal, esophageal, pancreatic and stomach cancers. A main side effect is neuropathy, which manifests as numbness, burning or tingling in the fingers, toes, hands, feet, mouth or throat; pain in the hands or feet; increased sensitivity, especially to cold; and a decreased sense of touch.

Despite its widespread use, the long-term consequences of oxaliplatin can be debilitating. Symptoms like numbness, pain and gait disturbance can persist for years after treatment and have a negative impact on quality of life. A 2015 study of patients with colorectal cancer found that many had mild to moderate neuropathy more than two years after they stopped taking the drug.

“I usually stop giving patients oxaliplatin when it starts to cause some numbness or tingling, because I can’t go back in time,” Weinberg says. “I don’t want to compromise their quality of life by giving them neuropathy.”

Other common chemotherapy drugs for GI cancers include irinotecan and 5-FU. Patients taking irinotecan may experience diarrhea, increased risk of infection and weakness, whereas 5-FU has side effects that include loss of appetite; hand-foot syndrome, which causes soreness, redness and peeling on the palms and soles of feet; and diarrhea. Doctors can prescribe medicine to help with both diarrhea and hand-foot syndrome, and patients should drink at least 2.5 liters of fluid a day to stay hydrated. Avoiding very hot water and tight-fitting gloves or socks, as well as moisturizing skin with unscented creams, can also help alleviate hand-foot syndrome. Patient education and awareness are the first line of defense to best manage side effects so that these can be recognized, and early treatment measures can be initiated by the patient and reported to the care team.

Radiation therapy isn’t used as frequently in GI cancers as chemotherapy and surgery, but it is part of the main treatment for most anal cancers, as well as for rectal, esophageal and liver cancers. It is also used less frequently to help treat stomach and small intestine cancers.

Common side effects of radiation therapy include skin problems (e.g., dryness, itching, blistering or peeling) and fatigue. To help manage skin problems, patients should use only lukewarm water during bathing, avoid scented skin products and stay out of the sun. Most skin reactions eventually resolve after treatment has ended. Other side effects depend on the type and location of radiation therapy, since it is a local treatment that affects only the tumor area. For instance, radiation to the stomach or abdomen can lead to nausea, vomiting and diarrhea. For treatment of anal cancer, radiation therapy can cause diarrhea, discomfort during bowel movements and short-term anal irritation and pain. Similarly, patients with rectal cancer may experience rectal irritation, painful bowel movements, bowel incontinence and sexual problems. Most of these side effects get better over time and can be managed with medication and rest, but others, such as sexual problems, may last longer.

To treat his rectal cancer, Hensel completed 28 rounds of radiation with chemotherapy, followed by four more rounds before his surgery in August 2018. His side effects from both treatments were mostly manageable, aside from excruciating (but ultimately temporary) pain during bowel movements and bladder irritation. However, he began to have issues with erectile dysfunction, for which he started taking daily medication, and his doctors also prescribed a penis pump. Fortunately, one doctor recommended that he preserve his fertility before radiation therapy by freezing a sample of semen.

After four more rounds of maintenance chemotherapy following surgery, his imaging scans in December 2018 showed no signs of cancer in his body. “Having a good support system has been really important for me, and I really latched onto support groups on Facebook early on in my diagnosis,” Hensel says. “I’ve never tried to hide my diagnosis, and being open about it has helped me process it better. I realize that there’s value in sharing my story.”

The American Society of Clinical Oncology recently endorsed integrative therapies like acupuncture, meditation, massage and yoga as evidence-based ways to manage the symptoms and side effects of breast cancer. Although less research has been performed to determine how integrative therapies might help patients with GI cancers, there is no evidence that they will be harmful. The report recommended meditation, music therapy, yoga and group stress management for reducing anxiety; and acupressure, electro-acupuncture, ginger and relaxation techniques that can be selectively offered along with antiemetic drugs to ease nausea and vomiting during chemotherapy. Meditation, relaxation, yoga, massage and music therapy were recommended for treating depression and mood disturbance. In addition, patients with GI cancers can ask their doctors about easing symptoms and stress with palliative care, which may be provided alongside curative treatment.

Organizations like the Colorectal Cancer Alliance and Fight Colorectal Cancer also help patients by providing resources, educational materials and support groups. Soon after receiving her diagnosis, Myrick began writing a blog called Peg’s Cancer Journey, which documented the day-to- day experience of treatment and its side effects. She had a recurrence in her liver around August 2017 and enrolled in an immunotherapy clinical trial.

“I’m a big proponent for being your own best advocate and recognizing that this is your body. Even though a doctor or family member might want you to do a certain treatment, you ultimately have the last say,” Myrick says. “Nobody can take the side effects away from you, and it doesn’t mean that you’re giving up the fight because you’re taking a chemo break. Always remember that your quality of life is essential.”

Patients with gastrointestinal cancers should be aware of specific side effects that might arise &mdash; and ways to prevent or ease them.

Meeri N. Kim, Ph.D.

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