Cheryl's Story: Ovarian Cancer


Cheryl Lampasona was 21 years old when she was diagnosed with a rare type of ovarian cancer that only 12 other people in the world have had. In virtually uncharted territory, it was unclear if she would be able to have children or what the treatment would be. Her doctor, Diane Contreras and the team at the Katz Institute for Women's Health, treated Cheryl, and now Cheryl has two beautiful children. Watch her story.

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Survivors tell their story


The Teal Quilt: Ovarian Cancer Survivors Tell Their Stories"


Ovarian Cancer Amazing Miracle Story-How a Mother and Daughter saved each other


Tell Every Amazing Lady About Ovarian Cancer, Louisa M. McGregor Ovarian Cancer Foundation also known as T.E.A.L. has a mission to promote public awareness and education of the signs, symptoms and risk factors of Ovarian Cancer, while providing support to survivors and raising funds for research in order to find the cure for Ovarian Cancer.

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These days I can not think about cancer at all.


It doesn't just come up in conversation when you're 22 - 'hey by the way a few months ago I had cancer'.
"For months afterwards it was all anyone ever wanted to talk to me about." says Lisa Arthurs

Lisa wanted to talk about going to the UK to study abroad - not cancer. She knew everyone was looking out for her but at the time it was the last thing she wanted. "I'd never had to deal with anything like that before in my life." says Lisa.

She didn't want to - She wanted to be Lisa again, she struggled to know how to tell people. "It doesn't just come up in conversation when you're 22 - 'hey by the way a few months ago I had cancer'." says Lisa. When she had a follow up appointment in the UK she opened up to one of her friends and asked her to come to her appointments with her. She wishes she could have accepted that kind of help earlier. "I think it's important to let people in. It might be scary but in the end you need people around you. I have had the difficult task of considering if and when I share this part of my life with new friends and partners." But the best thing she learned from finally letting other people into her life is that everyone just wants the best for her. "No one is going to judge me." says Lisa.
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...It turns out I had a borderline stage one ovarian tumour the size of a rugby ball.


It all started when I noticed a lump developing.
Julie Makin has been following Ovarian Cancer Action’s activity since she was diagnosed in April 2010 with an ovarian mass. It all started when she noticed a lump developing on the right side of her stomach. In a short time her bowel movements became so regular she became practically incontinent. And she had to urinate at lease 10 times a night. "The worst part was falling asleep at just after 6pm, which was not normal at all for me." says Julie.

"My stomach started to swell and I changed from a dress size 12 to looking nine month’s pregnant. I went to my GP who did an ultrasound and then referred me to my local hospital where they did another ultrasound." says Julie It felt like they didn’t know what to do. She had an MRI scan at a different hospital and her oncologist told her that they had to get this “thing” out and quick.
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Life was Separated


Cathy’s Cancer Survivor Story:
After I got over the initial shock of my diagnosis, after I recovered from my surgery, after chemotherapy was in my rearview mirror, something miraculous happened. I began getting on with my life. But I was forever changed, and in many ways, that was a good thing. For one, after my ordeal, I appreciated more, especially the little things.

But my life was separated into distinct two parts—before breast cancer and after breast cancer. I settled into a new normal. I was able to make peace with my scar, and see it as a badge of courage, as defiantly beautiful—it meant I was still alive. Maybe you will choose to mark your transition with something significant. A trip, a special purchase or perhaps a tattoo, like I did a year after my last chemo infusion. The cherry blossom branch that caresses my war wound is symbolic of my springtime diagnosis. To me, it signifies rebirth and hope.

I began attending SHARE meetings a few weeks after my mastectomy at the suggestion of Renee, a BC sister in my yoga class. Facilitators Marjorie, Agnes and the women in the ongoing group held my hand through my body rejecting the tissue expander (and emergency surgery to remove it), through my dread of chemotherapy, through my fatigue, baldness and my struggle with steroids. With their encouragement, I began to feel that maybe, just maybe, I would get through this.

When I came out at the other end of the tunnel, a strange thing happened. While I still went to SHARE meetings for a supportive "fix," my role slowly evolved. Somehow, I had transitioned and now I was a mentor for women newly diagnosed. Friends down the block and across the Atlantic in the Netherlands and the UK began asking me to talk to women who'd just received life-altering news. Sometimes it was exhausting. Sometimes it gave me flashbacks. But I was always willing to reach out to them. I felt it was my duty as a survivor.

I was honored when SHARE asked me to participate in their "Side by Side" program, where cancer survivors are matched with classrooms of medical students and teach them, through personal eperience, how to best communicate difficult diagnoses with future patients. So far, I've gone to the New York Medical College in Valhalla twice, and I think I've gained as much from it as I have hopefully given.

When SHARE was looking for volunteers to offer insight about what not to say to a cancer patient for an NBC segment:

I jumped at the opportunity. This led to an interview on a Women's Radio Network program on the same topic. In both cases, I welcomed the chance to tell more people about SHARE. They've been such a big part of my healing journey and I was finally able to pay it forward.I don't mind being a breast cancer "go-to girl," even for strangers. When I noticed on Facebook that the wife of a guitarist whose work I admire was recently diagnosed, I joined "Melissa's Healing Hope," her online blog. I tried to write encouraging comments after each post. One day, there was an email from Melissa with the subject line: "When does the worry stop?" I responded as honestly as I could. I told Melissa that I don't think you ever stop worrying about recurrence but after a while, worrying takes a backseat to living.

A couple of months later, there was a telephone call from my cousin Elaine, asking third-person questions about breast cancer. I originally thought she was inquiring for a work colleague until I realized she was talking about herself. "I found a lump..." Elaine began. I listened. She asked. I answered. I was there when she couldn't sleep, IMing at midnight. I was there when she came out of recovery after her lumpectomy. I was there, texting her during chemo infusions. And I'm still there.

At this past SHARE holiday celebration, Gina, who's wrestling with chemo and lymphodema, told me, "Seeing you at meetings is such an inspiration." I was so moved I couldn't speak. After all, I was just muddling through like everyone else. Just forging ahead because what other choice do we have? But then I realized that maybe I was the light at the end of the tunnel for someone currently in treatment.

At this point my life, I'm not quite sure where I belong. It's not so easy diving back into the workforce after cutting back my workload to give myself a chance to heal. As a result, my assignments have dwindled. But post-diagnosis, I try not to stress over things like this. Nothing quite pulls the rug out from under you like the words, "You have breast cancer." Everything else is small potatoes in comparison. But maybe I have a different mission now, instead of writing about the onboarding process for Fortune 500 companies. Maybe paying it forward is a bigger mission.
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Lump on her Birthday


TRIPLE NEGATIVE BREAST CANCER
I found the lump on my birthday, October 25th, 2014. It wasn't a happy 43rd. August 2014 I had my routine mammogram and a week later the letter from the hospital arrived; everything was "normal." Apparently, I have dense tissue in my breasts so the mammogram didn't detect the lump. (Ladies, if you have dense tissue in your breasts – ask your radiologist - don't stop at just a mammogram!) As soon as I felt it, I knew the mass didn't belong in my body; fear enveloped me.

A mammogram, an ultrasound, an MRI, a chest and abdomen CT scan, a bone scan and a few biopsies later, I received the diagnosis of triple negative breast cancer, stage three. Triple negative means my cancer is not fueled by any hormones: estrogen receptors, progesterone receptors or human epidermal growth factor receptor 2 (HER2); it is fast growing and has a higher percentage of reoccurring in other parts of my body.

The thread throughout my cancer diagnosis was fear. It gripped me tightly in its hands and whirled me around until I was dizzy and exhausted. I felt alone in my terror; friends and family would try and ease the pain by saying "There's a cure!" "Breast cancer is the best kind of cancer to have!" and "You'll be fine, my sister/cousin/hairdresser had it and she survived!" I politely nodded my head, thinking to myself, "You're not God, you don't know if I will be that small percentage of women that die from breast cancer – it happens!" I was being realistic. I wanted my fear to be acknowledged; I longed to be heard, and held, not patronized.

The steps I took that got me through my cancer diagnosis and treatment:

I clearly asked for what I wanted, whether it was lentil soup, a foot massage, silently being held on the couch or phone calls from friends; I didn't assume people knew what I wanted.

I was my own health advocate, making the necessary phone calls to my insurance and doctors: I scheduled many appointments, second and sometimes third opinions.

I accepted offers from friends, family and acquaintances for accompaniment to appointments; if no one offered, I asked. Even if it was a simple test I could clearly go to by myself, I needed their company to distract me from my catastrophic thinking.

I got a copy of every medical report, scan, test, x-ray, etc. that was done to me. I made sure I understood what was happening, asking my doctor questions along the way.

I kept a diary of all of my appointments; what was done, where, and who was the ordering doctor.

During chemo, I relied heavily on the nurses – they provide all the caring and a wealth of knowledge and tips.

I threw cancer parties: I'm the kind of person that needs support from my friends, so I made it happen.

I wore my natural looking wig when I wanted, and replaced it with hats towards the end; the wig was annoying. I did have fun at one point and bought an array of different colored wigs: I felt like a rock star when I wore them and got many compliments.

I posted on Facebook (that's my way of communicating to many people, but there's also www.caringbridge.org) that I encouraged phone calls and visits, and then I received them - that made me happy.

I made sure to get out every day, whether to run an errand, have a meal with a friend or see a movie with one, getting out and hearing people talk about their lives was refreshing.

I watched a lot of television, which is unnatural for me. It took my mind off of myself, and during chemo, it helped me to relax; I stuck to comedy and romance.

I watched Kris Carr's Crazy Sexy Cancer movie. It scared me, but it also made me feel like I am not alone.

I spoke to other survivors I knew and met up with them for coffee. When I felt overwhelmed, I took a break.

I made my cancer accessible: I answered people's questions about my health and diagnosis then I'd change the subject.

I bought several breast cancer books and flipped through them, with a friend, when I had a specific question; reading them alone was too scary.

I joined Facebook groups for triple negative breast cancer and the likes, and when I got overwhelmed or scared, I stopped reading the posts.

I limited googling information about my type of cancer.

I brought the same friend with me to each important appointment; she took notes and learned the breast cancer vocabulary alongside me. I turned to her during my decision-making process.

I called a cancer support hotline in New York City, SHARE, and spoke at length to a survivor on the phone. I was relieved - I finally felt heard, understood and supported! I keep in close contact with SHARE and still go to their cancer support groups.

Cancer support groups are monumental in my recovery: I learn a lot from the facilitators and the survivors, and I can speak my mind in a safe environment, where I am unconditionally loved and understood.

I was afraid to attend support groups for fear of hearing horror stories. When I was ready, I gave it a try. I listened to each woman and learned, reminding myself that every woman is different and her story will not necessarily be mine.

I attended breast cancer support groups in various different locations, and only returned to those that have a well-trained facilitator; some are too big or disorganized.

I found a local, reputable hospital that offers free classes to cancer patients and attended their weekly Mindful Meditation class, Stress Management class, Art Therapy class and Chi Gong class. I could relate to the people and I benefitted from learning techniques to relax my body and mind.

I attended weekly therapy sessions with my therapist, sometimes more than once a week.

I spoke to the oncology social worker at my hospital as often as needed.

I saw a psychiatrist and got on anti-depressants and anti-anxiety pills; at first I felt ashamed, but once the pills took effect, I was relieved.

I cried when I felt like it – for me, it came out all at once when I arrived home from the hospital, post-mastectomy: a breakdown.

I visited a holistic healer weekly, the energy healing was nurturing. I yearned for healing hands on my body, not those that poked or prodded me.

I got massages or facials regularly. At the time, someone was helping me financially, but massage and Reiki can be found free for cancer patients at your hospital.

I rested when I was tired, sleeping as much as needed, guilt-free.

I accepted help and asked for it when wanted (not just needed.)

I aimed to walk an hour a day; it felt therapeutic to breathe fresh air and circulate the blood in my body.

I drank a lot of Fiji water.

I ate healthy- lots of protein, greens and fruit, limited sugar and dairy intake.

I posted on Facebook that I wanted soup, and got containers of delicious homemade soups delivered to my door for weeks!

I learned which family, friends and acquaintances are there for me and which aren't. I was shocked in both good and bad ways, accepting the results.

I did a lot of journaling.

I created a cancer fashion blog, www.beautythroughthebeast.com and blog regularly.

I'm now giving back and reaching out to women who are being diagnosed.

I surround my self with positive affirmations.

I rid myself of toxic people and environments.

When I want to do something and hear a doubting voice in my head, I take action anyway! Today, I go for it. I don't know what tomorrow will bring, so I make the most of today.
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Not the Journey She Expected


Lisa’s Cancer Survivor Story:
Lisa Franklin has always been meticulous about tending to her health. She never missed a wellness visit. She saw her primary care physician and her gynecologist regularly. And when she started to experience some puzzling symptoms she went for a checkup immediately.

The problem was that her symptoms could have been anything. Gastro-intestinal discomfort, burning and gurgling in her stomach, a feeling something was stuck in her throat, painful intercourse and increased discharge. Was it an ulcer? Was it a parasite she had picked up in Brazil? All the tests were negative. She took Maalox. She became a vegetarian.

In 2013 she ended up in an emergency room in Dallas, Texas, where she was diagnosed with advanced stage ovarian cancer in both ovaries, which had spread to lymph nodes, liver and spleen. The largest tumor was on her colon. How could six doctors have missed it?

Since her cancer diagnosis her journey has become a mission—to raise awareness of ovarian cancer in under-served communities. "I have heard women of color saying black women don't get ovarian cancer. Well, I am here to tell them that they do."

There's a long history of cancer in Lisa's family. Because of it she went for a mammography five years ahead of time. "I considered myself proactive but I was just blown away that I didn't have the language to even ask about ovarian cancer testing."

"It never occurred to my doctors—and they were women," she says. "Doctors are the first line of defense and they need to be educated around ovarian cancer." Lisa believes that because this cancer is so silent, it's a very gray area in terms of the diagnosis. She wants to teach women how to bring up the conversation. "Now when I go for tests and blood work, women often ask me, 'tell me how you knew you had ovarian cancer.' They are hungry for information," she says.

"I tell them to ask the doctor to rule it out. If you have those pervasive, vague symptoms that any woman can have—because of menses, bloating, change of bowel habits, frequent urination, feeling full quickly, pain in intercourse—for more than three weeks, and you get no relief from over the counter drugs, you need to go and tell your doctor you need to rule this out. "

This is how Lisa found herself in a hospital in a strange city where she had moved from New York City two years before. She had wanted a change and she thought her money would go further there. She liked the idea that there was an emerging arts scene. A former program coordinator for a College Access program at CUNY, she took educational consulting jobs while she looked for a new position. "My plan was to figure out what I wanted to do," she says. But without steady employment, she didn't have any health insurance.

In that Dallas emergency room Lisa quickly learned that without health insurance in Texas, "no doctor would see me, even when I offered to pay out of pocket."

She returned to New York where New York Presbyterian Hospital agreed to begin treatment even though she had no insurance. (She has since applied for Medicaid.) Lisa began with three months of chemotherapy followed by de-bulking surgery. She then resumed chemo until January 2014. She went into remission in February but by September her symptoms returned.

The doctors offered more chemo. "They were very candid with me. They explained that what usually happens to a woman with advanced stage ovarian cancer is that the first time they aim to cure you. That is the hope."

But with such a brief remission, the doctors told her that her cancer was going to be chronic. The new chemo would act as a form of symptom control. But Lisa decided that since quality of life meant more to her, she would not go back into treatment. Her doctors had a hard time with her decision, but they respected it. Her family, however, was thrown for a loop. "They have had a difficult time accepting my decision." It helped a lot when her family met with her medical team and they came away with more understanding of why she had made this decision.

As a woman, Lisa has been on a quest for women's wellness and wholeness, "what I have been given to do on this earth." The irony of her situation is not lost on her. "How do I get a gynecological cancer when I have been teaching women how to honor one of their most sacred regions? Certain things can't be explained. I just have to accept," she says.

Lisa continues to reach out to other women. Soon after her cancer went into remission, Lisa became a SHARE Ambassador, educating women in under-served African-American communities about ovarian cancer symptoms and sharing her story. She continues to visit community-based organizations and churches to ensure that women have the information she didn't have.

In 2004, Lisa discovered waist beads. "They are from the African diaspora," she explains. "The beads were a way of adorning and affirming your femininity. In Ghana, baby girls are given the beads for protection because there is a myth that it's the beads that give a woman her shape. In Senegal the beads are a sign of sensuality." Lisa organizes waist beading circles where she teaches the history and women make their own beads to help them reclaim their sacredness and life giving, and healing.

But her overarching purpose is as a parent, a mother. Lisa has one son and one grandson. "No other role is as important as forming your child to be a decent human being," she says. Her son does not say much about her illness but he knows she is brave. But she is clear about what she hopes he will take away from her experience. "Even in the face of adversity, we can either shrink and let adversity take us over or we can allow that adversity to let us rise and shine, and use it to propel ourselves to our highest good."
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Listen to your body—it does tell you things


Lynn’s Cancer Survivor Story:
There is a lot of cancer in my family. My dad and uncle both had it twice. My first cousin is having a second bout of throat cancer. Three cousins had breast cancer, and my aunt had uterine cancer. So because of my family history, I was watching for something.

In the summer of 1997, I had the worst pain of my life, in my stomach. I thought it was appendicitis. I was on my way to the emergency room when it passed, so I didn’t go. At the end of that summer, I moved from Fort Lauderdale, FL, to northern Florida for a new teaching job. I felt nauseous, but I thought it was just the stress of changing jobs. Then my periods went from being just one day to three. I had always been regular, like clockwork.

I remember I was going on a date and had been feeling crampy all day. I was supposed to see the doctor the following week; I was just waiting for my new insurance to kick in. On my date, I started bleeding – really bleeding. My date worked in emergency response, so he was very calm and took me home. When the bleeding wouldn’t stop...
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Be sure to find time for you


Brenda’s Cancer Survivor Story:
I am a “seasoned” citizen (I don’t like to use the word senior!) and retired educator. I’ve never given birth, but I have plenty of children! I’ve worked with children of all ages, from elementary through college, and have been involved in a broad range of positions, including serving as a teacher, guidance counselor, and assistant principal.

I had fibroids for years, but it was abnormal heavy bleeding that led me to see my doctor. I had already gone through menopause, but would occasionally have very, very heavy bleeding. One of these bleeding episodes is what led me to make an appointment with my doctor. I learned that I had cancer in the fall of 2003, while I was at school. I was walking down the hallway, and talking with my doctor on the phone. By the time I got to my desk, he had told me I had uterine cancer....
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I just feel incredibly lucky


Janet’s Cancer Survivor Story:
In the spring of 2013, when I was 54 and thought I was pretty much through menopause, I started having unusual sporadic bleeding in the form of mini periods that happened every few weeks for about three months. I thought it was just another part of menopause and when it stopped, I forgot about it. I was in good health and didn’t have any pain, so I didn’t think there was anything to worry about.

At the end of that year, I saw my gynecologist for my regular Pap test and, almost as an afterthought, mentioned the bleeding. She looked at me with concern and said, “Bleeding is unusual for someone at your age. Let’s find out what’s going on.” She immediately ordered an ultrasound. As soon I got home from the test, my husband told me the doctor had already called. I called her back and that’s when I found out there was a five-centimeter mass on my right ovary......
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I’d much rather be embarrassed and alive


Teresa’s Cancer Survivor Story:
I had no symptoms, or didn’t realize it was a symptom until after the fact, and only went to the doctor because I was annoyed. I had what I thought was an infected ingrown hair bump on my vulva. I get them often, but this stubborn bump was different. It wasn’t red or inflamed, and it didn’t hurt. I couldn’t actually see the ingrown hair, but what else could it have been? It was big and hard and round, much like a wart. I thought that it had to be an infected hair bump. I really thought nothing of it and only called my doctor to have it removed after a month of trying to figure out how to “pop” it.

It was almost six weeks before I was able to get in to see my gynecologist for a non-emergency visit. He said, “hmm... well, this is an interesting looking bump. Why don’t we send it for a biopsy, just to see if the infection needs treatment?”
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Ladies, there is no test for ovarian cancer


Tiffany’s Cancer Survivor Story:
In March 2013, I started having some bloating and unexplained weight gain. I went to a couple of doctors. I had an X-ray and EGD (Editor’s note: an EGD, also called an upper endoscopy, is a test to examine the lining of the esophagus, stomach, and first part of the small intestine.) All tests and blood work didn’t find anything.

The next month, I went on vacation with my best friend for my birthday. After having an amazing root beer float after our day on the beach, we took a nap. I begin to vomit while I was asleep. I knew then something was really wrong. I went back to the gastroenterologist who had done the EGD. He said I had a disorder that didn’t allow food to properly digest in my body; however, I needed to order my own ultrasound...
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Saturday, September 23, 2017
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Why Me?

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