Advocate Profile: Carla Jimenez
St. Petersburg, Florida
I am an ovarian cancer survivor, grateful that I beat the odds to be alive today and grateful to be able to advocate for my sisters, my nieces, my friends, and all women and their loved ones.
Over six days in March 2005, I went from misdiagnosis of diverticulitis, to concern about exercise- induced asthma, to intensive care admission with a pulmonary embolism, to suspicion of colon cancer—all before being diagnosed with advanced-stage ovarian cancer. Surgery and eight rounds of chemotherapy followed, modified to resolve blood clots, and I have been in remission since late that year. There were many challenges, but overall I am one of the lucky ones.
I was lucky to be diagnosed before the pulmonary embolism killed me or the cancer advanced too far to treat. I was lucky to have the standard- of-care treatment and to have responded well. I was lucky to have good insurance coverage, financial security, and a loving support system. Now that I know the facts about ovarian cancer, I am astonished and angry that luck is so often necessary to become a survivor of this disease.
I considered myself a sophisticated patient, well versed in matters of women’s health, but I knew nothing about the risk factors or symptoms of ovarian cancer. I had no symptoms troubling enough to catch my attention, yet I had a cantaloupe-sized malignant tumor causing deadly blood clots. There were ambiguous signs (unexplained weight loss, painful intercourse, fatigue), but they seemed unrelated and were easily explained away. If my doctors and I had had thorough and open conversations about sensitive subjects and considered ovarian cancer, I may have been diagnosed sooner.
They say the only thing worse than finding out you have cancer is not finding out soon enough, and this is especially true with ovarian cancer. Two-thirds of women are diagnosed when the cancer has spread to a late stage, which places them in a category wherein just 27 percent will survive more than five years and the likelihood of recurrence is more than 70 percent. The sad truth is that one significant reason for the lack of awareness about ovarian cancer and the symptoms associated with the disease is that we lose so many of those affected before they can share their knowledge and experience with other women.
As soon as I was strong enough to return to my little bookstore, I baldly and boldly started handing out symptom cards and talking to customers, book group gatherings, and women’s group luncheons. Initial embarrassment of sharing about body parts and bodily functions gave way to insistence that we talk about “what’s up down there.” I joined the Survivors Teaching Students® program of the Ovarian Cancer National Alliance (OCNA), speaking to nursing and nurse practitioner classes about ovarian cancer risk factors, symptoms, and statistics. I am also part of OCNA’s amazing Grasstops Program, comprising 30 trained volunteers from across the country, advocating for our cause. With my fellow Grasstops, I visit Capitol Hill twice per year to ask for research and awareness funding to help save women’s lives. I am also a board member of Ovacome Gynecologic Cancer Alliance, a Partner Member of the Alliance, and part of our “Trust Your Gut” awareness campaign.
My connection with other survivors means knowing and loving women who have not been so lucky—and sometimes feeling guilty that I have survived. I am compelled to put my gratitude into action by advocating for awareness, education, and research. Doing what I can helps me accept the grace of being so very lucky to have a chance to save women’s lives.
Newly Diagnosed with Ovarian Cancer? Start Here.
Q&A with Krishnansu S. Tewari, MD, FACOG , FACS
Q: I have just been diagnosed with ovarian cancer. What steps should I take to ensure that I receive the best possible treatment?
A: Perhaps the single most important thing you can do is seek care at a cancer center where providers have experience treating ovarian cancer. These centers, often referred to as “high-volume” centers because they treat many patients with the disease, are staffed with physicians who have extensive experience in treating ovarian cancer and provide the expertise you need.
High-volume hospitals and high volume surgeons are more likely to practice and adhere to National Comprehensive Cancer Network (NCCN) Ovarian Cancer Treatment Guidelines; improved survival rates have been associated with patients treated according to NCCN guidelines.
Seeking care with a high-volume provider will also help ensure that you receive an accurate diagnosis, which is incredibly important. In some cases, advanced cancers of the gastrointestinal tract (gastric cancer, colorectal cancer, hepatobiliary cancer, pancreatic cancer) can mimic ovarian cancer, so receiving an accurate diagnosis that will lead to the most appropriate treatment is key.
Q: Are there current advances in treatment or research that I should be aware of as I review my treatment options?
A: Absolutely. New and important advances include weekly dosedense Taxol® (paclitaxel) and intraperitoneal chemotherapy; heated intraperitoneal chemotherapy is also being studied at specialized centers. Be aware that, ideally, chemotherapy should be administered at an NCI-designated comprehensive cancer center. Cancer centers designated by the National Cancer Institute (NCI) are at the forefront of cancer research, so you will have access to the latest clinical trials of novel drugs, including anti-angiogenesis inhibitors and PARP inhibitors.
Q: What steps can I take throughout treatment to help maintain overall health and combat side effects?
A: Some steps you can take include the following.
Maintain adequate caloric and protein intake. A dietitian who has experience working with cancer patients can help ensure that you are eating the best foods to meet your nutritional needs; inquire at your cancer center if there is a dietitian on staff to assist you, or seek a professional in your community.
Exercise regularly, according to your ability.
Maintain regular work hours as much as possible during chemotherapy, as this can help you retain a valuable sense of normalcy and productivity.
Create a support network of friends and family; also, consider participating in an organized support group to connect with other patients.
Laugh! The restorative power of laughter cannot be overemphasized; laughing can help you maintain a positive frame of mind, which may just boost your immune system.
Q: What steps can I take to optimize my time with my physician and make sure I am communicating effectively with my care team throughout this journey?
A: Preparing in advance for your appointment can help: write down any questions you want to remember to ask, and consider bringing a close friend or family member to each appointment, even when things are going well, to record the details of your conversation with your doctor.
Krishnansu S. Tewari, MD, is a boardcertified gynecologic oncologist and a professor at the University of California, Irvine. He earned a BS in molecular biology at the University of California, Berkeley, and attended medical school at the University of California, Irvine, where he also completed his OB/GYN residency and his fellowship in gynecologic oncology. Dr. Tewari is currently director of research in gynecologic oncology, co-chair of the cancer center’s Clinical Trials Protocol Monitoring and Review Committee, and principal investigator of the Gynecologic Oncology Group. He is also the director of the gynecologic oncology program at the St. Joseph Hospital Center for Cancer Prevention and Treatment. Dr. Tewari is recognized nationally for his contributions to both robotic oncologic surgery and the conduct of clinical trials in gynecologic malignancies. Dr. Tewari has published more than 70 peer-reviewed papers and numerous book chapters and is on the editorial boards of Gynecologic Oncology and Women magazine.
Symptoms of Ovarian Cancer
From Ovarian Cancer National Alliance
Bloating
Pelvic or abdominal pain
Difficulty eating or feeling full quickly
Urinary frequency or urgency
Additional symptoms include fatigue, indigestion, back pain, pain with intercourse, constipation, and menstrual irregularities.
(These symptoms are not as useful in identifying ovarian cancer because they are also found as often in women who do not have the disease.)
If you have these symptoms more than 12 times during the course of one month and the symptoms are new or unusual for you, see your doctor, preferably a gynecologist. Experts suggest a combination pelvic/ rectal exam, a CA-125 blood test, and a transvaginal ultrasound.
What You Need to Know about Ovarian Cancer Risk, Detection, and PreventionBy Stacey N. Akers, MD
Gynecologic Oncologist
Roswell Park Cancer Institute
Despite encouraging treatment advances for many other types of cancer, ovarian cancer remains a challenge. One reason why: there is no screening test for detecting ovarian cancer in otherwise-healthy women, so tumors are usually discovered in the late stages, when treatment options are limited.
But research is giving us reason to be hopeful. Thanks to gene sequencing, researchers are gaining important new insights into how ovarian cancer develops and spreads—and which women are most likely to develop the disease. At the same time, physician-scientists, including my Roswell Park colleague and department chair, Dr. Kunle Odunsi, are developing exciting new treatment approaches that harness the natural defenses of a woman’s own immune system to recognize and attack cancer cells.
As we apply those latest findings and await the next big treatment advances, it is important to recognize that self-education is also critical to understanding and taking steps to reduce your risk of ovarian cancer.
Five Things You Should Know about Ovarian Cancer
1. Your personal and family medical history may increase your risk of ovarian cancer.
A history of cancer—either your own or that of a blood relative— can be a “red flag” warning about your risk of many cancers, including ovarian cancer.
If your mother, daughter, or sister has had ovarian cancer, you may have an increased risk of the disease. You may also be at higher risk if you or a blood relative has had breast, uterine, or colorectal cancer. Be sure to alert your gynecologist or primary care provider about a family history of these types of cancer. If appropriate, you may be referred for genetic counseling and testing. If it turns out that you are indeed at increased risk for ovarian cancer, a genetic counselor can describe options for reducing that risk.
You may also be at greater risk if you are older—most women diagnosed with ovarian cancer are over 55—or if you have never been pregnant. Remember, however, that risk factors do not tell us everything. Many women with one or more of these risk factors will never develop ovarian cancer, and many others who do get the disease have no known risk factors other than advancing age.
2. If you are at very high risk, you may be a candidate for preventive surgery.
About 15 percent of all cases of ovarian cancer are linked to inherited mutations of the BRCA1 and BRCA2 genes. While ovarian cancer affects only about 1.5 percent of women, individual risk can be as high as 40 percent among those who have inherited the BRCA1 mutation. Because these women are at high risk of developing both breast and ovarian cancer, they may opt to have their breasts and/or ovaries removed.
A new and important study suggests that preventive, or prophylactic, oophorectomy (removal of the ovaries) by age 35 is an effective strategy for reducing the risk of ovarian cancer in women who have tested positive for a BRCA1 mutation. This is major surgery that should be considered only in consultation with a trusted gynecologist. If you are at high risk for ovarian cancer, talk to your provider to see if preventive surgery is a recommended option for you.
Another strategy, called conservative management, uses magnetic resonance imaging, mammograms, and pelvic ultrasound to monitor your health closely if you are at high risk, with the aim of catching the disease in its early, more treatable stages, if it develops.
3. Ovarian cancer is one of the most diverse forms of cancer, with more than 30 different types.
Because there are so many different types of ovarian cancer, pathologists play an especially crucial role in the accurate diagnosis of the disease. Different types of ovarian cancer may respond differently to the same treatment, so identifying the correct type is key to creating the appropriate treatment plan.
By looking at the biopsied tissue under a microscope, a pathologist can also determine whether the tumor is benign (not cancer) or malignant. There are three main categories of ovarian cancers:
Those that develop from the surface epithelium, or the cells found in the lining of the ovaries
Germ cells, or those that are destined to form eggs
Stromal cells, which release hormones and connect the different structures of the ovaries
Each of these three main types of ovarian cancer (and their subtypes) behaves very differently and requires a different treatment regimen.
Remember to ask your doctor to discuss the diagnosis with the pathologist—and do not be shy about requesting a copy of your pathology report.
4. Early diagnosis is key, so do not ignore any new or unexplained symptoms.
Early detection can make a significant difference in the outcome for women with ovarian cancer. Women who are diagnosed in the early stages have a wider range of treatment options and usually fare much better than those diagnosed at an advanced stage.
Keep in mind that the symptoms of ovarian cancer are the same as those of other disorders and diseases. Women sometimes write them off, assuming that they signal less serious illnesses.
Watch out for these common symptoms of ovarian cancer:
Pressure or pain in the abdomen, pelvis, or back
A swollen or bloated abdomen
Nausea, indigestion, gas, constipation, or diarrhea
Feeling tired all the time
Shortness of breath
Feeling the need to urinate often
Pay attention to your health, and promptly discuss any new or unexplained symptoms with your gynecologist and/or primary medical provider.
5. The type of specialist you see may affect the outcome of the diagnosis.
Research shows that women with ovarian cancer who receive care from gynecologic oncologists— physicians who specialize in diagnosing and treating cancers of the female reproductive organs, including the ovaries, cervix, and uterus—have significantly better outcomes than those who are not.
Only a gynecologic oncologist is specially trained to perform surgery for ovarian cancer. Even if a gynecologist has already performed surgery on you, it is not too late to consult a gynecologic oncologist.
The Foundation for Women’s Cancer offers an online tool that can help you find a gynecologic oncologist in your area: foundationforwomenscancer.org/find-agynecologic-oncologist.
Dr. Stacey N. Akers is a Gynecologic oncologist at Roswell Park Cancer Institute (RPCI), a National Cancer Institute–designated comprehensive cancer center in Buffalo, New York. Board-certified in obstetrics and gynecology, she is a graduate of the University of South Alabama College of Medicine and completed a fellowship at RPCI. For additional resources, including a link to the Familial Ovarian Cancer Registry, the oldest and most comprehensive database of its kind, visit roswellpark.org/cancer/ovarian/ prevention-detection, e-mail askrpci@roswellpark.org, or call (877) ASK-RPCI [877-275-7724].
Committed to Community
One ovarian cancer survivor shares her personal and public journey.
Dee Sparacio Hightstown, New Jersey Dee Sparacio is a scientist. She is also a wife, a mother, a grandmother, a teacher—and an ovarian cancer survivor. Among all her other titles, it is the scientist in Dee that often comes through as she describes her journey with cancer. As she discusses treatment and now advocacy, her analytical approach reflects her training as an engineer and her desire to understand the how and the why behind the diagnosis.
Originally diagnosed with Stage IIIB ovarian cancer in 2005, Dee conducted her own research to understand the diagnosis and her treatment plan. When she was approached to participate in a Phase I clinical trial that would add selenium to her chemotherapy regimen, she investigated that too. “I read the trial protocol and the informed consent papers and then reached out to the librarian at my cancer center for information regarding selenium use as a cancer treatment,” Dee says. Her thoughtful, methodical approach led to her decision to join the trial: “I knew that as a Phase I trial the researchers were looking at dose level, but with side effects from the drug being well within what I was willing to accept, I decided to participate.” After undergoing surgery and nine cycles of chemotherapy, Dee was cancerfree.
In 2006, having Completed treatment, Dee attended the LiveSTRONG® Survivors’ Summit in Austin, Texas—an event that would launch her mission as an advocate. “I came home empowered to make a difference,” she says. “I began to volunteer with different organizations and realized that people would connect to my mission to raise awareness of ovarian cancer and funds for research if they knew my story.”
This realization that her personal experience could be put to use for the greater good was transformative, and Dee quickly got to work. With the help of her gynecologic oncologist and the social work department at her cancer center, Dee founded an in-person support group for women with gynecologic cancers—and quickly experienced the benefit personally. “It was invaluable for me to meet others diagnosed with ovarian cancer,” she says. “They ‘got’ what I was dealing with: being bald, having numb toes, and the joys of ‘chemo brain.’”
As the bonds within the support group grew, Dee’s commitment to helping other patients also expanded, and in December 2007 she launched a personal blog (womenofteal.blogspot.com), detailing her experience and discussing topics of interest to the ovarian cancer community. “My goal initially was to reach out to other women in New Jersey by sharing my journey with ovarian cancer and to share information about local organizations that raise awareness and funds for research,” Dee says. From there she recognized the benefit her scientific background could have in helping other patients understand the clinical aspect of their care, and her posts expanded to include information about clinical trials and research studies. In demystifying some of the more complex scientific data, Dee strove to expand her readers’ knowledge and empower them to make informed decisions about their care.
In 2008, fully engrossed in her blog and other advocacy efforts, Dee faced a recurrence of ovarian cancer. She again underwent surgery and chemotherapy, detailing her experience through her blog as she progressed through treatment, continuing to participate in the support group she had helped to found, and connecting with a broader group of patients and professionals through social media chats—all of which provided essential support. “The chats and support group helped me overcome that feeling of being alone,” she says. In May 2009 she was again pronounced cancerfree.
Since her second diagnosis, Dee has furthered her advocacy efforts as one of the founding members of a monthly Twitter chat dedicated to gynecologic cancer topics (#gyncsm, occurring the second Wednesday of each month at 9 p.m. EST). In addition to serving as a co-moderator of the #gyncsm chat, she is a member of Hunterdon & Mercer County Regional Chronic Disease Coalition, a Research Advocacy Network Focus on Research Scholar, and a Society of Gynecologic Oncology patient blogger.
In all she does to help women understand their diagnosis and current research and to provide support, Dee is driven by a commitment to put her personal experience to work on behalf of other survivors. “The longer I stay disease-free, the more vocal I have become,” she says. “I want to share information about the disease with others by volunteering, writing my blog, and speaking to honor the women who are on this journey with me, to honor those whose lives were lost because of ovarian cancer, and to support those newly diagnosed with the disease.”
Ovarian Cancer and Genetic Risk
Women with a family history of ovarian cancer and those newly diagnosed with the disease often have questions about the role of hereditary risk. The reality is that most (90 percent) cases of ovarian cancer are sporadic, or not the result of an inherited genetic mutation; 10 percent are linked to hereditary syndromes. Here, Megan Myers, MS, genetic counselor at UCSF Medical Center at the University of California, San Francisco answers some common questions about hereditary risk and genetic testing.
Which hereditary cancer syndromes are associated with ovarian cancer?
While research has established two main hereditary cancer syndromes— hereditary breast and ovarian cancer syndrome and Lynch syndrome— knowledge of other, less common causes of hereditary ovarian cancer is continuing to expand the landscape of research in this field. Myers says that research related to the role of inherited risk in ovarian cancer is evolving quickly. “If you had asked me to discuss genetic mutations linked to ovarian cancer five years ago, I would have given you a straightforward answer,” Myers says, “but we are continuing to learn so much that the answer is changing rapidly. Genetic testing has been advancing quickly, and we are continuing to discover new genes that are linked to an inherited risk for ovarian cancer.”
Who should undergo genetic testing?
According to Myers, women with any of the following risk factors should consider seeking genetic counseling to see if they are a candidate for testing:
Women with a family history of breast or ovarian cancer
Women diagnosed with an epithelial ovarian cancer at any age
Women with a family history of breast, ovarian, colon, or endometrial cancer
Women diagnosed with cancer at an early age (such as premenopausal breast cancer)
Women with multiple cancer diagnoses
Women with Ashkenazi Jewish ancestry
When should women undergo genetic testing?
Ideally, Myers says, a woman should undergo genetic testing before she is diagnosed with cancer, though this special report: ovarian cancer is obviously not always possible. “The next best scenario is if genetic counseling and testing can occur before a patient undergoes surgery or other treatment,” she says. This is because if there is a chance to avoid additional surgery that might be recommended based on genetictesting results, surgical procedures could be combined to avoid risks associated with multiple surgeries. Results can also in some cases qualify an individual for a clinical trial, Myers says, adding to the incentive to test before treatment begins.
Why is genetic counseling important?
A genetic counselor plays a key role in helping patients and families understand the information that testing provides. For those who receive a positive result that shows they have inherited a specific hereditary syndrome, Myers says that counselors can provide individualized risk assessment plans for patients and their family members and coach them through screening protocols associated with their results and through sharing information with extended family. For those whose genetic-testing results are negative, meaning no genetic mutation has been identified, Myers says, a counselor will still carefully consider family history and may recommend earlier or more-frequent screening.
Hereditary Syndromes Related to Ovarian Cancer
Though new information about genes related to ovarian cancer risk is emerging, at this point there are two established hereditary syndromes linked with an increased risk of ovarian cancer, which Megan Myers defines here.
Hereditary breast and ovarian cancer syndrome is caused by mutations in the BRCA1 and BRCA2 genes. These genes act as tumor suppressor genes to protect women and men from certain cancers, such as breast, ovarian, melanoma, prostate, and pancreatic cancer. Women who have a BRCA1 or BRCA2 gene mutation have a 30 to 50 percent chance of developing ovarian cancer in their lifetime.
Lynch syndrome is caused by an inherited genetic mutation in an individual’s mismatch repair genes, called MLH1, MSH2, MSH6, and PMS2. These genes are involved in fixing mistakes that occur during DNA replication. A person who has Lynch syndrome is at an increased risk of developing colon, endometrial (uterine), ovarian, stomach, small bowel, pancreatic, urinary tract, brain, and skin cancers. A woman who has Lynch syndrome has up to a 15 percent lifetime chance of developing ovarian cancer.
Personal Perspective: A Cancer Survivor Shares Her Story of Genetic Testing
Barri Babow
Barri Babow was not surprised to learn that she had cancer. Describing her reaction to a 2010 diagnosis of triple-negative breast cancer, the Sacramento, California, tech industry program manager says, “I wasn’t upset; there were no tears, no outrage.” Having watched both of her parents, as well as other family members, go through cancer diagnoses and treatment, Barri says, “I knew I was going to get cancer. It was just a question of when.”
It was Barri’s extensive family history of cancer that alerted Hope Rugo, MD, her oncologist at UCSF’s Helen Diller Family Comprehensive Cancer Center, to the possibility that the diagnosis was the result of hereditary breast and ovarian cancer syndrome, a genetic mutation in the BRCA1 or BRCA2 gene. During Barri’s initial consultation, Dr. Rugo mentioned that possibility and introduced her and her family to UCSF genetic counselor Nicola Stewart, MS, CGC.
That first conversation with Stewart was eyeopening. “Nicola is amazing in her ability to communicate things that can be so complex in a way that makes them so easy to understand,” Barri says. “By the time she was done sharing information and had taken a detailed family history, it was apparent that the genetic mutation came from my father’s side of the family—he had prostate cancer before he was 70, and his only sibling died of pancreatic cancer before he was 60; those are the two main risk factors for men with a BRCA1 or BRCA2 gene mutation.”
Barri underwent genetic testing herself for the BRCA1 and BRCA2 genes, and the result was positive, showing that she carried the genetic mutation. The positive result, though not surprising, provided critical information as Barri moved forward with planning her treatment. “The information definitely impacted my treatment plan,” she says. “Even though the tumor was tiny, there was no way I would opt for a lumpectomy [given the genetic information I learned].”
Instead, Barri opted for a double mastectomy and simultaneous oophorectomy to reduce the risk of both breast cancer recurrence and ovarian cancer. “I have a long life ahead of me,” she says, “and I didn’t want to go through this again. The genetic results, combined with my aggressive diagnosis, led me to choose aggressive treatment.”
Having completed treatment and moving ahead with her active, busy life, Barri is grateful for the information she was provided through genetic counseling and for the conversations about genetic risk that her family has had as a result. Though she does not believe that genetic testing is the right choice for everyone, she now encourages others to seek more information about their family history. “When I talk with other women who have had breast cancer before menopause or those who can list numerous relatives who have had breast or other cancers, I’ll ask if they’ve considered talking with a genetic counselor,” she says. “I don’t tell anyone that they have to have genetic testing, but I might suggest that they talk with a genetic counselor, as it can be such a powerful tool.”
Sharing the News
Tips for communicating genetic information to family members
Genetic counselor Megan Myers says that “positive genetictest results can be lifesaving information for family members. Making your relatives aware that there is a genetic mutation in the family provides them the opportunity to see if they too carry the genetic mutation and to take steps to reduce their risk.” Myers acknowledges, however, that this news is not always easy to share—both because of various family dynamics and because genetic information is complex. She advises considering the following steps when sharing information with family.
1. Gather the Information
Genetic-testing results (this is the most important piece of information)
Family tree
Screening recommendations
Family letter explaining the situation and what it means for your family members
A clinical note, written by your genetics professional, explaining the results and the next steps for you and your family
2. Communicate
Options for communicating genetictesting results and associated information (listed above) include mail, e-mail, phone, and Kintalk.org (see sidebar “Kintalk: Conversation Starter”).
You may need to do some sleuthing to find family members you have not been in touch with recently. Asking other family members or using social media are good first steps.
3. Reach Out to Resources
Genetic information is complex and can be hard to explain. It is important to remember that you do not need to have all the answers—there are experts who can provide information to answer your relatives’ questions. Here are some good, credible resources:
National Cancer Institute, cancer.gov
American Cancer Society, cancer.org
Hospital websites, including kintalk.org
FORCE (Facing Our Risk of Cancer Empowered), facingourrisk.org
Though the process of notifying family about genetic-testing results can be difficult, Myers reminds patients that taking the initiative to reach out is critical. “Some people don’t share their genetic information because they don’t want to be the bearer of bad news,” she says. “But while talking about cancer risk is never a comfortable conversation, sharing this information may help relatives prevent or detect cancer at an early and treatable stage—it just might be a lifesaving conversation.”
Kintalk:Conversation Starter
A social networking site gets people talking about hereditary cancer risk.
Patients diagnosedwith hereditary cancer syndromes often face a difficult challenge: sharing news of the complex diagnosis with family members. And yet it is a critical conversation because knowledge of the potential for the hereditary condition can lead to screening and early detection, which saves lives.
In 2012 the UCSF Hereditary Gastrointestinal Cancer Program launched a social network tool, called Kintalk, to help families share this critical information. Kintalk is a web-based tool that allows patients to share cancer risk information directly with their relatives via a secure website. Patients can send family members a link to the site via e-mail; family members then log in and find comprehensive resources about Lynch syndrome and genetic counseling. The process takes some of the burden off the patient, who no longer has to explain the complicated diagnosis. “It can be tough enough to give a family member bad news about being at risk for genetic predisposition to cancer,” Megan Myers says, “but then to have to explain complex genetic information can be overwhelming and even paralyzing for a person.”
With the help of Kintalk, patients feel more comfortable and confident in securely sharing their genetic information with family members, and family members are able to understand the information and their next steps in terms of genetic testing and screening.
For more information visit kintalk.org.
Q&A: The Next Step: Thriving through Survivorship
Ritu Salani, MD
Gynecologic Oncologist
The Ohio State University Comprehensive Cancer Center–Arthur G. James Cancer Hospital and Richard J. Solove Research Institute Columbus, Ohio
Q: As a woman nears the end of treatment for ovarian cancer, what are some of the steps she should take to plan for survivorship?
A: After the completion of treatment for ovarian cancer, the focus of survivorship care is on both the management of the side effects of cancer and its treatment (typically surgery and chemotherapy) as well as on the prevention/ detection of recurrence or new cancers.
The most important thing is to return to a sense of well-being and get back into a routine. This begins by increasing physical activity and eating a healthy diet but also by taking the time to rest and recover when needed. In regard to survivorship care, make sure you know your cancer history (specific diagnosis and treatment regimens) and the specific instructions for followup surveillance (monitoring for recurrence), which can be provided in a survivorship care plan. With this information you can be on the same page as all of your healthcare providers and avoid unnecessary testing.
In addition, it is important to be aware of the common signs and symptoms of recurrent ovarian cancer, which often differ from the side effects of treatment. These symptoms often include abdominal bloating or swelling, persistent abdominal/pelvic pain, changes in bowel or bladder habits, and shortness of breath, among others. If you notice any of these symptoms, contact your healthcare provider for evaluation. Furthermore, remember that you will continue to be at risk for other cancers, so you should continue with appropriate cancer screening and consider genetic risk assessment (if you are not already doing so).
Q: What are some of the most common ongoing side effects of treatment or late effects of treatment that ovarian cancer survivors face?
A: To some degree all ovarian cancer survivors experience long-term and late effects of cancer and its treatment. One of the most common symptoms is fatigue, which may last for years after treatment. Other commonly reported symptoms include psychological distress (including anxiety and depression), insomnia, memory loss (often referred to as “chemo brain”), chronic pain, and neuropathy. Women have also reported menopausal symptoms, sexual dysfunction, and lymphedema (swelling in the legs). It is important to be aware of the possible side effects and address concerns with your healthcare provider, as treatments may be available.
Q: Are there proactive steps that women can take to combat ongoing side effects and contribute to overall wellbeing?
A: Getting back into routine and embracing a healthy lifestyle are critical first steps. This not only includes regular exercise and a wellbalanced diet but also improving lifestyle behaviors such as quitting tobacco and maintaining a healthy weight. Additionally, it is very important to make sure that other medical problems, such as diabetes, are well managed, as this can improve overall outcomes and reduce the risk of other health problems.
The other thing is to really listen to your body and seek out additional help for specific side effects. Individual treatments may be available and are often underutilized by women dealing with this disease. For example, if a woman is dealing with chronic pain, there are several options available. Though this includes medications, options such as acupuncture and physical therapy have also been shown to be beneficial. Cognitive behavioral therapy can help with multiple symptoms, such as insomnia, sexual dysfunction, and even dealing with the fear of recurrence, to name a few. I encourage all women to be proactive about discussing these issues with their healthcare providers to get the assistance they need.
Q: Fear of recurrence can be a major concern of survivors. What steps can patients take to help manage these fears?
A: As the diagnosis of cancer is a life-changing experience, all ovarian cancer survivors experience anxiety and a fear of recurrence. I recommend that all patients (and their families) consider counseling or support groups to help explore and manage personal fears.
Support groups play an invaluable role for survivors and their loved ones. They provide a resource not only for women who have already been through treatment but also for those who are just starting their journeys, as well as their family members and caregivers. Participating in support groups can help alleviate the fear of recurrence and help manage expectations for the future.
A good understanding of the disease, treatments, and plans for follow-up can also help manage fears of recurrence. This knowledge can be empowering to both the patient and her family. Patients should also make sure that they have good access to the treating physician and to support services to have questions answered whenever necessary.
Ritu Salani, MD, is a gynecologic oncologist and clinician-scientist with The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James) in Columbus, Ohio. The OSUCCC – James is the only National Cancer Institute-designated comprehensive cancer center in central and southern Ohio. Dr. Salani received her medical degree from Northeastern Ohio Universities College of Medicine, and then went on to complete her obstetrics/gynecology residency at Emory University School of Medicine in Atlanta, Georgia. She completed both a gynecologic oncology fellowship and Master’s of Business Administration at the Johns Hopkins University. To learn more about the gynecologic oncology treatment and research at The OSUCCC – James, visit cancer.osu.edu.