Navigating An Ovarian Cancer Diagnosis: What to Expect and How to Cope

Receiving an ovarian cancer diagnosis can be an overwhelming experience, impacting not only the patient but also their loved ones. In this article, we’ll guide you through the steps of understanding the diagnosis process, creating a treatment plan, and addressing the emotional and practical challenges that come with the journey.

Understanding the Diagnosis of Ovarian Cancer

The journey begins with ovarian cancer diagnostic tests that help healthcare professionals accurately determine the presence and extent of ovarian cancer. These tests may include:

• Imaging tests: CT scans, MRIs, and ovarian cancer ultrasound provide detailed images of the pelvic region to visualize the ovaries and surrounding organs. These tests help determine the size, location, and spread of the tumor. Transvaginal ultrasounds, where the ultrasound probe is inserted into the vagina, provide clearer, more detailed images of the ovaries, fallopian tubes, and uterus.
• Biopsy: In some cases, a tissue sample may be taken and examined under a microscope to confirm the presence of cancer cells and determine the type and stage of ovarian cancer. However, biopsies are not used in the majority of ovarian cancer diagnoses due to the difficulty of early detection. This highlights the critical importance of ongoing research to develop more effective early detection methods for ovarian cancer, which could lead to earlier diagnoses, more timely treatment, and improved outcomes for patients.
• Blood tests: CA-125, a tumor marker, is often elevated in women with ovarian cancer. However, this test alone is not enough for a definitive diagnosis, as other conditions can also cause elevated CA-125 levels. It’s worth noting that CA-125 ovarian cancer screening has a sensitivity of about 80% in detecting ovarian cancer overall, but is more effective for advanced-stage ovarian cancer (90% detection rate) than early-stage (only 50% detection rate). Additionally, about 20% of women with ovarian cancer will have normal CA-125 levels, particularly in early stages when cancer is most treatable.

It’s important to note that the average age of ovarian cancer diagnosis is 63, although the disease can occur in younger women as well. For example, low-grade serous ovarian cancer (LGSOC) typically affects women around age 45, which presents unique challenges as these patients often face balancing treatment with work, family responsibilities, and fertility concerns.

Knowing the signs and symptoms of ovarian cancer, such as abdominal bloating, pelvic pain, and changes in bowel habits, can help with early detection and prompt medical attention. Post-menopausal bleeding is a significant warning sign that should be evaluated immediately by a healthcare provider, as it can be an important indicator of gynecologic cancers, including ovarian cancer.

Understanding Different Types of Ovarian Cancer

It’s important to understand that ovarian cancer isn’t a single disease but rather a group of distinct diseases with different characteristics and treatments. The average age of diagnosis varies by type. As mentioned above, LGSOC typically affects women around age 45.

Also, some ovarian cancers grow aggressively, while others, like LGSOC, grow more slowly but can still spread to nearby organs. Borderline ovarian tumors (BOTs), also called borderline ovarian cancer or tumors of low malignant potential, occupy a unique position between benign and malignant tumors and typically affect younger women (40-50 years old).

Different types of ovarian cancer respond differently to treatments. For example, LGSOC tends to be less responsive to standard chemotherapy and may benefit more from targeted therapies or hormone treatments. Borderline ovarian tumors are primarily treated with surgery, and chemotherapy is NOT recommended for these cases.

Creating a Treatment Plan

After a definitive diagnosis and staging, a treatment plan tailored to the individual’s needs is established. This plan may include:

Surgery

Surgical removal of cancerous tissue, and potentially the ovaries and surrounding structures, is often a primary step in treatment. The extent of surgery depends on the stage and spread of the cancer. For borderline ovarian tumors and early-stage cancer in younger patients who wish to preserve fertility, less extensive surgery may be possible. Surgery is especially critical for borderline ovarian tumors, where it is the primary treatment.

Choosing a gynecologic oncologist for your surgery is crucial – research shows that surgery success rates nearly double when performed by these specialists compared to general surgeons. Debulking surgery, also called cytoreduction surgery, aims to remove as much visible cancer as possible. The goal is “optimal debulking,” which means leaving behind no visible cancer or only tumors smaller than 1 cm. This surgery often includes removing both ovaries and fallopian tubes (bilateral salpingo-oophorectomy), the uterus (hysterectomy), the omentum (a fatty tissue covering abdominal organs), affected lymph nodes, and sometimes portions of other organs if the cancer has spread. For advanced ovarian cancer, there are two approaches to debulking surgery:

• Primary debulking: Surgery is performed first, followed by chemotherapy
• Interval debulking: Several rounds of chemotherapy are given first to shrink tumors, followed by surgery

Chemotherapy

Medications are used to target and destroy cancer cells, either before or after surgery. Ovarian cancer chemotherapy can be administered intravenously or directly into the abdominal cavity (intraperitoneal chemotherapy). It’s worth noting that response to chemotherapy varies by cancer type: for example, LGSOC tends to be less responsive to standard chemotherapy than other types, and chemotherapy is NOT recommended for borderline ovarian tumors, where surgery and ongoing surveillance are the current standard of care.

Targeted Therapy

These drugs focus on specific molecules involved in cancer growth and progression. They can be used in combination with chemotherapy or as a maintenance therapy to prevent recurrence.

For certain types, such as LGSOC, targeted therapies like MEK inhibitors and BRAF inhibitors may be particularly effective, as they target specific gene changes, like KRAS and BRAF mutations, often found in these cancers.

Hormone Therapy

Hormone therapy for ovarian cancer, especially with drugs called aromatase inhibitors, has shown promise for certain types of ovarian cancer, like LGSOC. These medications work by blocking estrogen, which can fuel cancer cell growth.

Immunotherapy

Immunotherapy for ovarian cancer stimulates the body’s immune system to recognize and attack cancer cells. This approach has shown promise in treating advanced ovarian cancer. Bevacizumab (Avastin) is an established immunotherapy that targets blood vessel growth and is used both with chemotherapy and as maintenance therapy.

Radiation Therapy

Directed beams of radiation are used to destroy cancer cells. While not commonly used for ovarian cancer, it may be employed in certain cases to target specific areas.

It’s crucial to work with an experienced gynecologic oncologist who can develop a treatment plan tailored to your specific situation. With less common diagnoses like borderline ovarian tumors or LGSOC, getting a second opinion from another specialized physician is strongly recommended, as these conditions can sometimes be misdiagnosed.

The Emotional Rollercoaster

An ovarian cancer diagnosis can trigger a wide range of emotions, including fear, anger, sadness, and anxiety. It’s essential to acknowledge and address these feelings. Coping strategies include:

• Seeking support: Lean on friends, family, and support groups to share your feelings and experiences. Don’t hesitate to ask for help when you need it.
• Mental health care: Professional counseling or therapy can provide invaluable guidance for managing emotional challenges. Many cancer centers offer psycho-oncology services to support patients’ mental well-being.
• Mind-body practices: Meditation, yoga, and deep breathing can help alleviate stress and promote emotional well-being. These techniques can also help manage the side effects of treatment.

Support Systems and Resources

Navigating ovarian cancer requires a strong support network and access to valuable resources:

• Loved ones: Family and friends provide emotional and practical support, reminding you that you’re not alone. Don’t be afraid to lean on them and communicate your needs.
• Support groups: Joining a support group connects you with individuals who understand your experiences and can offer guidance. Many ovarian cancer charity organizations host online and in-person support groups.
• Cancer organizations: Organizations like Not These Ovaries offer resources, information, and programs to assist patients and families. They can help you navigate the healthcare system, find practical advice, and access the latest research and treatment options.
• Clinical trials: Consider participating in clinical trials testing new treatments. These not only give you access to cutting-edge treatments but also help advance our understanding of ovarian cancer and how to treat it best. For example, current clinical trials are exploring promising alternatives to chemotherapy for LGSOC, including MEK inhibitors and hormonal therapies that may be more effective than standard treatments.
• Second opinions: With less common diagnoses like borderline ovarian tumors or LGSOC, getting a second opinion from another gynecologic oncologist is strongly recommended. These conditions can sometimes be misdiagnosed, and treatment approaches may vary.

While an ovarian cancer diagnosis presents challenges, it also signals the beginning of a journey toward healing and strength. By understanding the diagnosis process, creating a comprehensive treatment plan, addressing emotional well-being, and embracing available support systems, individuals and their loved ones can navigate this journey with resilience.

Remember, Not These Ovaries is dedicated to supporting you on this path, advocating for improved care, and fostering hope for a brighter future. Stay informed, communicate openly with your healthcare team, and prioritize your physical and emotional well-being. You have a community behind you, ready to support you every step of the way.