SurvivorNet

Power of Support— Mom Diagnosed With Rare Ovarian Cancer Says Journey Is ‘Not As Scary If You Have People Walking With You Through It’

By Danielle Cinone,

9 days ago

Hope & Support Through a Difficult Diagnosis

After battling a rare form of ovarian cancer, City of Hope patient Heidi Paolone is cancer free and spreading awareness for the disease and the incredible support she received from City of Hope Orange County in Irvine, California.
Ovarian cancer has been called the “cancer that whispers,” because women often don’t experience symptoms until their cancer has already reached its late stages.
SurvivorNet offers a comprehensive guide to ovarian cancer features advice from some of the nation’s top gynecologic oncologists, to guide you through every stage of the diagnosis and treatment process. Check out SN Local, featuring 20 cities across the U.S., to explore expertise and community near you.
Psychiatrist Dr. Lori Plutchik says supporters of cancer patients should prepare themselves for a wide range of emotions a cancer diagnosis can spawn. “People can have a range of emotions – they can include fear, anger – and these emotions tend to be fluid.”

City of Hope cancer center patient Heidi Paolone, a mom of three from the West Coast, was diagnosed with a rare form of ovarian cancer after undergoing what she calls a "life saving" elective hysterectomy [removal of the uterus, ovaries, and/or fallopian tubes]. When her doctor went in to perform the surgery he noticed something unusual and decided not to perform the surgery, but instead take biopsies—ultimately revealing she had cancerous tumors. Now, cancer free, Paolone is sharing her story to spread awareness for the disease and expressing her gratitude for the support she's had from her loved ones and City of Hope Orange County in Irvine, California. This story was first featured as part of the institution's internal publication efforts. Ovarian Cancer: Overview

Paolone recently told City of Hope, "I never in my wildest dreams thought I would have cancer, but it's not as scary if you have people walking with you through it, and City of Hope is walking with you." Her doctor ultimately referred her to Gynecologic oncologist Joshua Cohen, M.D., the medical director of the Gynecologic Cancer Program at City of Hope Orange County Lennar Foundation Cancer Center, a community she describes as "a place of healing." She explained, "When I met with Dr. Cohen, he had already taken the time to go over my records. And what’s more, he had a plan for me. He explained everything so well and so thoroughly and compassionately. I left knowing that I was in the right place."

Paolone underwent a successful surgery to remove the cancer in the fall of 2022, and didn't need chemotherapy afterwards. She instead needed, hormone therapy followed by a regular schedule of blood work and advanced scans for monitoring. She's proud to admit that the support she received through City of Hope's social worker, a clinical dietitian and a therapist, have helped her get through the arduous and emotional time of battling cancer. In a recent interview with City of Hope , Paolone insisted, "If you don't have hope, you don't have anything ... and you have to be very courageous to have hope." She credits having all the helpful programs and services all in one location to her being able to "spend less time traveling for health care and more time with my family.”

Helping Patients Understand Treatment Options For Ovarian Cancer

In a letter to her earlier self, shared by City of Hope , she referred to herself as "scared and vulnerable," saying, "Today, you will learn what it means to be fearful. You will hear the words, 'You have a rare form of ovarian cancer.' You will need injections, infusions, MRIs, bone scans, x-rays, and complex surgery. You will feel like you are always at a medical appointment, and those appointments are constant reminders of your illness. "On the day of your surgery, you will feel intensely vulnerable and afraid that you will not be there for your children. You are about to question everything and at the same time be overwhelmed with information. There will be unexpected treatments and side effects from medications. Your mind will be filled almost entirely with thoughts of your disease and possible cures. Questionable sources will promise you miracles in a bottle. You will be reminded daily of your disease every time you see your scar or feel your joints ache. The unexpected loss, to cancer, of a dear friend and supportive mentor will be an early setback in your journey." She continued, "But as unimaginable as it may seem, you can be scared and brave at the same time. As impossible as it may look at this moment, cancer will not define you. You will be blessed with new connections. You will find a community of like-minded women and share your journeys together. You will befriend other patients and find kindness in strangers. "You will be grateful for friends who reconnect and reach out with love and support. Pay attention to the fighters, and join with people who lift you up. Let your friends and neighbors help you. You will be amazed at the goodness that surrounds you. People will follow through so you don’t have to do it alone."

Paolone impressively was able to run a half marathon five months after surgery. She also has gotten involved in yoga and pilates, started traveling with her family, and no longer stresses about her health. Her letter, written earlier this year, concluded with "hope and gratitude," writing, "Don’t forget, fearing what may happen tomorrow robs you of enjoying today. "Know that you will keep your optimism, determination and desire to live life to its fullest. Cancer cannot — will not — take that from you."

Power of Support

If you were recently diagnosed with cancer, you likely know about the wide range of emotions that news can bring. This is one of the most challenging phases of the cancer journey to overcome. However, a team of supporters can be most useful during these early stages. Your supporters can be close family members and friends or people from outside your inner circle. WATCH: Sharing details about your cancer diagnosis. “Some people don’t need to go outside their family and friends circle. They feel like they have enough support there,” New York-based psychiatrist Dr. Lori Plutchik tells SurvivorNet. “But for people who feel like they need a little bit more, it is important to reach out to a mental health professional,” she added. One benefit of having supporters is that they can help alleviate stress and anxiety following your diagnosis and advocate for you during treatment. Sometimes, it is not always easy to share news you have cancer, even among loved ones. In such instances, you can seek a trained professional to center your support group around. Mental health professionals can help fill this space because many are trained to help you navigate your cancer treatment. “Make sure that the mental health professional that you work with is reaching out with your consent to the rest of your team, to the oncologist, to the surgeon, it can also be helpful to reach out to family, friends, and any other caretakers that may be involved in the person’s treatment,” Dr. Plutchik said. Dr. Plutchki recommends cancer patients consider the following three steps to get the help they need after a diagnosis:

Step #1: Seek additional support if you need it (this could mean speaking to a mental health professional or seeking out a support group)
Step #2: Look for a mental health professional with experience helping people in your situation.
Step #3: Keep your care team connected. This may include your friends and loved ones, your therapist, and the doctors who are treating your cancer.

Learning About Ovarian Cancer

Ovarian cancer has been called the “cancer that whispers,” because women often don’t experience symptoms until their cancer has already reached its late stages. The symptoms that do appear at first are hard to identify as cancer. This subtlety of symptoms makes it essential for women to know the warning signs, and report them to their doctor. The term ovarian cancer refers to a number of different tumors that grow in the ovary. The ovaries produce the sex hormone, estrogen, as well as eggs. Every woman has two ovaries, one on either side of her uterus. The fallopian tube picks up the egg from the ovary and carries it to the uterus for fertilization. WATCH: ‘There are now more options to treat ovarian cancer than ever before’ Many ovarian cancers actually begin in the fallopian tubes. A few cancerous cells first grow on the fallopian tubes and then, as the fallopian tubes brush over the ovary, these cells stick to the ovaries and eventually grow to form a tumor. There isn’t just one ovarian cancer; there are many different types that occur at different stages of life. In fact, researchers have identified over 30 types, but these three are the most common:

Epithelial. About 90% of ovarian cancers are epithelial, which means the cancer cells are located on the outer layer of the ovary. Most epithelial tumors are not cancerous, but when they are cancerous, they can spread before they’re detected.
Stromal. This rare type of tumor forms in the connective tissue that holds the ovary together and produces estrogen and progesterone.
Germ cell. These tumors, which develop in the cells that produce the eggs, are more likely to affect a single ovary, rather than both ovaries. When a teen or young woman is diagnosed with ovarian cancer, it’s usually the germ cell type. The good news is that most women with these types of ovarian cancers can be cured.

According to SurvivorNet team of medical experts, the symptoms of ovarian cancer can include:

A feeling of bloating or fullness
Pain in the pelvis or abdomen
Nausea
Vomiting
Changes in bowel habits
Bleeding from the vagina (especially after menopause)
Unusual discharge from the vagina
Pain or pressure in the pelvis
Belly or back pain
Feeling full too quickly, or having difficulty eating
A change in urinary or bowel habits, such as a more frequent or urgent need to urinate and/or constipation
Extreme fatigue
Pain during sex

“We don’t have a good screening method, but if you have symptoms, it’s very important that you go to your physician because there might be an opportunity that we can detect it when it’s still early stage,” Dr. Jose Alejandro Rauh-Hain , a gynecologic oncologist at MD Anderson Cancer Center, previously told SurvivorNet. “It’s very important that patients are not afraid to ask questions to their physicians. Because the sooner we can diagnose the cancer, the better that prognosis.”

How Is Ovarian Cancer Graded and Staged?

Although it's unclear what type or stage of ovarian cancer Heidi Paolone battled, it's important to understand that the disease is officially staged and graded through surgery to determine its extent. and can be divided into three grades of aggressiveness. The grade is not determined by the size or stage of the tumor, but rather by the behavior of the cells in the tumor.

Grade 1 cells are the least aggressive cancer because they look most like normal ovarian tissue and are well-differentiated. Grade one ovarian cancer is less likely to spread.
Grade 2 cells are mildly aggressive.
Grade 3 cells are the most aggressive form of ovarian cancer and are poorly differentiated. They have a large nucleus or cell center. They divide very quickly and no longer look like normal, healthy cells. This type of cancer is most likely to spread.

Ovarian cancer can also be classified into four different stages, regardless of grade:

Stage 1: The cancer is found only in one or both ovaries.
Stage 2: The cancer has spread to other areas of the pelvis.
Stage 3: The cancer has spread to the abdomen and other body parts in the abdominal region.
Stage 4: The cancer spreads to regions beyond the abdomen.

Treating Ovarian Cancer

With ovarian cancer, the standard of care (whether after surgery or before) is a “very, very effective” chemotherapy, says Dr. Dana Chase, a gynecologic oncologist at Arizona Oncology. When ovarian cancer patients are diagnosed, according to Dr. Chase, they are usually given chemotherapy, which puts about 80% of patients into remission, at least for some time. RELATED: What’s the Best Ovarian Cancer Treatment Path? That Depends on Several Factors “The current treatment that we’re going to give you, the standard treatment, is in existence because thousands of women have participated in studies,” Dr. Chase notes to SurvivorNet. After initial treatment which often involves surgery and chemotherapy, your doctor may recommend a form of maintenance therapy. WATCH: PARP Inhibitor drug for ovarian cancer treatment “We use some maintenance therapies with chemo and then continue them after chemo, such as Avastin while others we use after chemo, such as Olaparib,” Dr. Chase explains. A growing number of women diagnosed with epithelial ovarian cancer are eligible for treatment with a class of drugs called PARP inhibitors. PARP inhibitors are options for women as maintenance therapy after the first chemotherapy or platinum-sensitive recurrence or as a treatment for recurrence. Contributing: SurvivorNet Staff