How do I talk to a cancer patient?

It may be in the hallway, the nurses station, a patient in a room talking about their friend, coworker, relative, teacher with cancer… "What do I say?”, they ask me. “What do I bring?” “What do I write in their card?”

Why is it so hard to talk to someone with cancer, we ask ourselves? Of course, it is about discomfort, fear of saying the wrong thing, too many implications in every sentence that you don’t know where to start. So we all know what the solution is – don’t go, don’t talk, drop off a pie and you will feel good.

Not that a pie isn’t welcome, don’t get me wrong. But let’s help those people not to feel afraid of doing the wrong thing.

1. Be a good listener. This is reflective listening as they unload anything on their mind. You may reflect back a word to reinforce your listening or reflect the emotion that the story reveals but this is not a time for your comparison or how you can understand how they feel …. Because, no one can; but you have genuine empathy from your journey.

2. What to bring? Everyone is different but universally, when you are feeling down and body image has been seriously challenged, anything you would not buy yourself is a treat. From body lotion to face cream, as long as you feel special. I was always freezing with sucking ice chips in chemo and ice packs wrapped on my hands – a blanket for hospital or home naps was special. Cozy slippers, socks, cool hats lined in soft fleece are welcome. An inspirational quote on a necklace or plaque helps you stay grounded too. A ticket in your pocket from lottery to a show is a fun way to keep you going through chemo weeks. Most importantly, bring yourself and effort.

3. How long do I stay? Your visit is needed and welcomed but usually energy is low so 1 hour is often max. as brain and voice are exhausted. Calling, text, email before you come and never taking it personally if it is not a good day is really important. Planning for the time furthest from chemo works best. Walk and talk is always a good idea since exercise is so important and easier with encouragement.

4. What do I say? People ask me… “What do I say if she asks me how I look?” The person inside didn’t change, you don’t have to apologize if you slip up on a word – it is a time to laugh at yourself and notice the amazing spirit behind their skin. It is an exercise of looking past the outside and noticing inner strength and struggles together. Noticing the present and enjoying the moment with forgiveness of what you can’t do and taking a new look at the smaller things.

5. What do I put in a card? Just don’t put “Get better soon” arghhh! I have a few wonderful quotes and an Apache poem that my husband gave me engraved on a pendant and goes well inside a card. There are some great empowering, inspirational cards I have seen. In emails, it helps to send positive energy and say you are thinking of them. As I received emails from around the world, I remembered one from my friend in England who was on the subway in London thinking of me and sending me energy. I think I even felt the energy coming in the words. It just seemed so powerful coming across thousands of miles to my heart. Random times, just thinking of you, made me feel included even when lying in bed. We feel forgotten – like the world will continue without us. It is that sense of belonging that is so human and needed.

Apache Poem
May the sun bring you new energy by day
May the moon softly restore you by night
May the rain wash away your worries
May the breeze blow new strength into your being
May you walk gently through the world
And know its beauty all the days of your life.

6. How often do I go? The most important message is to be there for the whole journey. We all have a tendency to bring the pie at the beginning when there is a diagnosis and surgery, the family is in shock and a hot meal is certainly welcome. But, just as the Cancer Blues points out, cancer's emotional fallout is hidden on the inside. When chemo ends, you are just beginning to realize the fragility of your life and how it all nearly ended, with a foggy road ahead as your only compass. The life of control and heroic energy is replaced by doubt, fatigue, pain and uncertainty. We have to get used to that and it takes years. Be the friend or companion who understands that journey. Be there at the beginning, the middle, after chemo, after their first day at work, on a chemo visit and their car ride, at their cancer anniversary, at their end of treatment party and coffee after the next mammogram or oncology follow up. Just check in. Celebrate milestones however small.

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Teal Magnolia Fashion Show - Sold Out Success


Fashion Show in Oceano

Fashion Show in Oceano

Fashion Show in Oceano
On Saturday January 17, 2015, we held the "Teal Magnolia" Fashion Show and Luncheon. Our sold-out event was fully sponsored by the Elks Lodge of Oceano California.

Sharla Cannon owner of Le Papillon from the village in Arroyo Grande, partnered with our foundation and provided her beautiful line of clothes for our models. The models looked radiant! Judy Hearn, Blanche Hollingsead Fuguate, Jeannie, and Cindy Miranda, graced the runway.

Our signature "Teal Magnolia" bubbly drink was a huge success.

The goal of our fashion show and luncheon was directed at empowering women with the necessary information on ovarian cancer that gave them the tools need to fight this dreaded disease. We feel that once a woman understands the signs to look for she is then able to be her own advocate in her healthcare. Ovarian cancer is considered to be a silent killer but we don't agree with that designation because there are many signs of ovarian cancer that are misdiagnosed. Once a woman knows the signs she is able to insist on the necessary tests to be taken. This is our purpose for our education drives.

As the President of the Sharon Leigh Ovarian Cancer Foundation I spoke on the BRCA gene and its relationship to ovarian cancer .

Cristina Martins Sinco Vice President of the Sharon Leigh Ovarian Cancer Foundation spoke on the signs and symptoms of Ovarian cancer.

Our deepest thank you to the Elks Lodge, Tony and Margaret were wonderful to work with. The fantastic committee of women who came together, created a beautiful setting for our guests. Our committee was Kathy Fissori, Kim Jeffers, Sylvia Dodd, Linda Fielder, and Debra Jackson. Hair and make-up were done by Susie Almaquer, Alexandria Silveira Goncalves and Cassandra Sigala.

Thank you again to our sponsors: SLOCO Data, Sierra Auto of Grover Beach, PGE and Michelle Kossuth for providing the graphics.

Sincerely,
Sharon Leigh


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Cristina Martins Sinco: My Mom


“She was like the [Energizer] Bunny on crack her whole life,” said Cristina Martins Sinco about her mother...

As told by Cristina Martins Sinco and written by Camillia Lanham of the Santa Maria SUN
Vice President of Sharon Leigh Ovarian Cancer Foundation

Cristina Martins Sinco
Cristina Martins Sinco
Something wasn’t right: She couldn’t eat much. The little she did eat made her feel very full. Her stomach was constantly cramping. She felt sick too often. And she didn’t have any energy.

The short, sassy, big-brown-eyed Valentina Martins was never tired, and she befriended almost everyone she met. She was usually overflowing with vitality; that’s why it was weird.

Her daughter, Cristina Martins Sinco, said she remembers her mother as someone who never stopped moving. When Sinco was a child, her mother used to get these migraine headaches, but rather than rest, Martins would dunk a handkerchief in ice water, tie it around her head, and finish the household chores.

Martins moved to the Central Coast from Portugal with her husband and two children when Sinco was a child. Otherwise healthy, she started having issues in her late 60s.

Doctors couldn’t find anything wrong with her. They tested her blood, checked for stomach cancer and colon cancer, sent her to gastroenterologists, looking for anything that might indicate what the problem was. The symptoms made it seem like Martins had irritable bowel syndrome, but then the symptoms got worse.

“Every test came back negative. We knew something was very wrong; we just didn’t know what it was,” Sinco said. For two years, Martins went undiagnosed, reeling from whatever was making her ill. Martins was certain it was some kind of cancer.

She was right.

Sinco wears teal more often during the month of September than any other time of year. Blue-hued, beaded bracelets adorn her wrist, and she wears a small silver pin in the shape of a ribbon on her shirt. “Hope,” it says in block lettering.

Alana, a small, wiry-haired dog that protects the house like a beast when the mailman shows up at the door, has a dark teal fabric rose attached to her collar.

The hue of Sinco’s blue-green sweater contrasts with the red highlights in her hair, and the dark amber lipstick she’s wearing matches the paint on the walls of her family room. She has the same full face, perky cheeks, and bright brown eyes as her mother.

Valentina Martins
Cristina's mother Valentina Martins
Before her mom got really sick, Sinco was a full-time nurse at Marian Medical Center in Santa Maria. She’s spent much of her adult life working with people who have diseases, cancers, or chronic illnesses, but when her mother was diagnosed with ovarian cancer, she was shocked. The whole family was.

“Even when we were standing in the room, and her physician told us she had ovarian cancer, never in our wildest dreams did we think it could have been that,” Sinco said.

The color she wears so often in September—Ovarian Cancer Awareness Month—is the shade dedicated to that particular cause. Breast cancer has pink; colon cancer has blue; ovarian cancer has teal.

It’s the same hue that saturates many of the papers, pamphlets, and post-card sized fliers that are stacked opposite the coffee cups and sweets on Sinco’s kitchen table. She picks one up as she starts to talk about why she has them. The card she grabs has a list of symptoms on it, and some of them sound normal—well, normal for women to experience.

  • Bloating.
  • Constipation.
  • Pelvic or abdominal pain.
  • Back pain.
  • Fatigue.
These symptoms are uncomfortable things a woman generally wouldn’t think twice about. They’re unpleasant, but they’re also part of having a menstrual cycle, which can be a problem because the symptoms are often overlooked. But if they persist for longer than they should—say, two weeks or more—it could mean that something more significant is going on.

Sinco keeps the informational pamphlets and papers to hand out to other women with the goal of making them more aware of why they should pay attention to their bodies. She speaks at different women’s groups and Santa Maria Rotary clubs, helps out with events at Marian’s Mission Hope Cancer Center, and works with various nonprofits dedicated to the ovarian cancer cause. Since Martins passed away in 2012—less than two years after she was diagnosed—Sinco has become a sort of ovarian cancer awareness ambassador.

“She’s kind of the driving force. I feel like this is one of the things I have to be doing with my life,” Sinco said. “This is my mission. This is what I’m doing now. This is my job.”

Ovarian cancer is considered a rare cancer—accounting for a mere 3 percent of the cancers in women—but it causes more deaths than any other cancer of the female reproductive system, according to the American Cancer Society’s website. The society estimates that in 2014, about 21,980 women will receive a diagnosis of ovarian cancer, and approximately 14,270 women will die from it.

One of the reasons ovarian cancer has such a high mortality rate is because of how difficult it is to diagnose.

April Kennedy, an oncologist at the Mission Hope Cancer Center in Santa Maria, said approximately 70 percent of the cases are caught when ovarian cancer is already in the later stages of development, meaning the cancer is widespread—in the lymph nodes and potentially in the bloodstream. Of those women who are successfully treated, 75 percent will get the cancer again.

“Ovarian cancer is so very frustrating,” Kennedy said. “If you catch it in the early stages it’s almost always curable. … But it’s impossible to catch at the early stages.”

She clarified her statement, saying that the cancer is more responsive to treatment in the early stages and adding that once the symptoms become apparent, women are often already in the later stages of the cancer.

“That’s the problem,” Kennedy said.

And there’s no specific test for ovarian cancer. Conversely, doctors check for cervical cancer by performing a Pap smear and check for breast cancer by doing an annual breast exam.

There’s not a good marker used to detect ovarian cancer, either. Certain proteins found in blood are markers that doctors can use as indicators for certain kinds of cancer. Elevated levels of those specific proteins could mean that cancer is present. CA-125 is the marker associated with ovarian cancer, but Kennedy said it’s not always a good indicator.

“The CA-125 can go up with cancers of [the ovaries], but it doesn’t always,” Kennedy said. “So it’s a crummy test.”

Let’s recap: The cancer is hard to find, it’s hard to keep at bay, and women diagnosed with a later stage of it often succumb to the disease within five years of their diagnosis.

Kennedy said the women she treats start chemotherapy as soon as they’re diagnosed. After a couple of weeks of chemo, they head down to Santa Barbara to see a gynecological specialist, who performs a surgery to remove all of the cancer and reproductive organs and to scrape the lining of the pelvis. Women continue the chemo until the cancer’s gone and they’re in remission.

Kennedy said she’s currently treating five women who have ovarian cancer. Of those patients, two are participating in clinical trials of a drug called rucaparib, which specifically targets ovarian cancer cells. Mission Hope collaborates with UCLA in trials of drugs that are on the cusp of Federal Drug Administration approval and have been testing the new drug for about six months, Kennedy said.

“We don’t open trials until the medicine has been proven to be effective,” Kennedy said. “People aren’t guinea pigs—we know it works; it’s just something extra on top of the therapy we’re already giving them.”

Rucaparib is used in tandem with standard ovarian cancer treatment and as a sort of upkeep mechanism once someone is in remission. The drug is something that’s known as a PARB inhibitor, which basically prevents cells from repairing themselves. Chemotherapy targets rapidly dividing cells and breaks them down. Cancer cells generate quickly, but so do bone marrow and hair cells, which is why chemotherapy patients often lose their hair.

Kennedy explained that PARB inhibitors specifically recognize broken-down cancer cells. The goal of the treatment is to prevent those cancer cells from repairing themselves, which hopefully keeps the cancer from coming back.

Sinco said once her mother was diagnosed, everything moved quickly. The woman speaks at a rapid pace, recounting the way things happened. Martins’ abdomen had started swelling with fluid, and a couple days later, Sinco said her mother looked like she was seven months pregnant. Doctors tested the fluid, determined it was full of ovarian cancer cells, and started Martins on chemotherapy.

“It was kind of this whirlwind. … It’s like boom, boom, boom—I mean, things just happen so fast,” Sinco said. “In my family, everyone was stepping all over each other to help.”

She rotated days with her siblings to take Martins to her chemotherapy appointments and stay with her during the week. Her sister, Paula Sousa, said things went too quickly.

“It becomes a family event,” she explained. “You’re there, and you’re going through it with them.” It just becomes a part of your daily lives, she added, and all of a sudden the children are taking care of the parent. Sousa said Martins lived her whole life taking care of and nurturing other people. “It felt really strange to be on the other side of that,” Sousa said. “I really appreciated my mom’s strength the whole time. … You know, she lived her whole life for her kids.”

Sinco said her mother fought the cancer off and went into remission for about three months before it came back. A month before Martins passed away, Sinco got married. It was in December 2011, about a year earlier than she’d planned. “Everything you want to do with your mother, you should do it,” Sinco said her mother’s physician told her. “We just sped things up. We just kind of scrambled things, and it was perfect.” She remembers that her mother wore a black sequined beret, a floor length skirt, and a dark red and gold floral-print shirt.

“It was probably the longest day of her life. … There was such a fog,” Sinco said of her wedding. “You’re happy because you’re getting married, and you’re sad because your mom is dying. … She was a trooper. She was her sassy self right up until the last hours of her life.”

Martins spent those last hours in her bedroom with her family. She was lying in a hospital bed at her Santa Maria home, surrounded by flowers, gifts, cards, and books. She had been her lucid self until the day before, but refused to go without being able to set eyes on all of her children. Martins took her last breath after she was certain her daughters and her son were in the room to say goodbye. She was 72.

“She looked around the room at every one of us; her eyes looked on my brother, and she passed,” Sinco said. “I feel so grateful to have been a part of her last few breaths,” Sousa said. “It helped me maybe not to be so angry.” Doctors had given Martins three to five years to live when she was first diagnosed, and Sousa said it had been barely two years. It happened fast, and it changed the lives of her children. Sousa said she’s extremely supportive of the awareness work her sister does, and thinks it’s important for women just to become aware of what ovarian cancer symptoms are, even if all it sparks is a prolonged conversation with their doctor.

“If we can save one life, it’s worth it. “If we can do that for one woman,” Sousa said.

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Pelvic Ultrasound Exam Discount


We have arranged a discount on pelvic ultrasound exams for our readers in the Temecula, California area! This includes screening for ovarian cancer, cysts, fibroids and more. Unique Ultrasound is giving our readers an exclusive 10% off during the month of January.

A pelvic ultrasound is also useful in the investigation of a number of problems including:

  • Pelvic pain
  • Infertility
  • Irregular or infrequent periods
  • Heavy or painful periods
  • Postmenopausal bleeding
This ultrasound will examine will cover the following anatomic structures: The uterus, the endometrium, the cervix, the ovaries, the fallopian tubes, the adnexae and the kidneys. The pelvic ultrasound is offered in the Unique Ultrasound Temecula office and is a safe and painless exam.

The Sharon Leigh Ovarian Cancer Foundation joins with Unique Ultrasound in supporting all women in the Temecula Valley and we are committed to fighting cancer at every stage! For more info on this great opportunitiy click here or call Unique Ultrasound today at (951)694-8388. Be sure to mention this offer and use coupon code OC2241 to receive the 10% off. (Valid only during the month of January 2015)
Sincerely,
Sharon Leigh

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Our Arroyo Grande Area Fashion Show


We are getting even more excited about our upcoming Fashion Show and Luncheon! Saturday, January 17th we are going to feature some great designs and great food, along with presenting some up-to-the-minute information on Ovarian Cancer. Our desire is to raise awareness of Ovarian Cancer and have some fun doing it!

Join us on Saturday, January 17th and share this message with those you love. For more info on this fun event click here.
Sincerely,
Sharon Leigh

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Another wonderful thank you from Run for Her


Recently I received a glowing email from Kelli at Run for Her. Not often do you get such a wonderful thank you, and this one is especially dear to me because this thank you was for our donation of $20,000 to help fight ovarian cancer.

Dear Sharon,
  Ever since the Saturday night of the Run for Her Kick Off Party when I turned around and saw your beautiful face, I have been trying to think of how to express the extent of our gratitude to you and the Sharon Leigh Ovarian Cancer Foundation.  I was blown away with appreciation and utter excitement that you drove over 4 hours that evening to the Kick Off Party to hand deliver the incredibly generous $20,000 donation from your foundation. 

I can’t possibly put into words how profoundly helpful this is to ovarian cancer research but how full of gratitude my heart is for you making the personal delivery of such a generous gift.

  Sharon you have been a voice for ovarian cancer that echoes so powerfully across so many platforms and to so many hearts.  I have witnessed and experienced the growth of your Golf Tournament and the passion and kindness that surrounds it from so many.  You are a pioneer in this fight against ovarian cancer on every level – awareness, fundraising, the warmest of hearts, and a genuine drive to help every person affected by this disease.

  I feel so honored to know you and so honored and grateful that the Sharon Leigh Ovarian Cancer Foundation has donated such a generous gift to Run for Her.  I have attached how the money you have donated in the past has helped support the work of Dr. Beth Karlan and the Cedars-Sinai Women’s Cancer Program.

Sharon, you are such an extra special gift to so many. Thank you from the bottom of my heart and the hearts of our Run for Her family.
Best,
Kelli Sargent
Run for Her, Founder
Sr. Team Lead and Producer, Special Events
Cedars-Sinai Medical Center

Run for Her is a critical factor in raising funds and awareness for leading-edge ovarian cancer research. If you would like more info on Run for Her click here.
Sincerely,
Sharon Leigh

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Wednesday, November 22, 2017
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Ovarian Cancer

This year in America Ovarian cancer will strike an estimated 25,500 women, and kill more than 14,000! Ovarian cancer remains the deadliest gynecologic malignancy and the fifth leading cause of cancer deaths among women in the United States.

What’s the problem? There is no early detector for Ovarian Cancer!

It’s been 25 years since a test for ovarian cancer was introduced to help diagnose this disease.
Should this get your attention, YES!
Should you do something about it? Yes!

I sailed along in life eating well, working out regularly, I didn’t smoke, didn’t have a drinking problem, only the occasional glass of wine. When one day I was told you have cancer. I have what! Wake up Sharon you have ovarian cancer.

It was found in the first stage, why? the early detection exams listed below found my cancer. I grant this there was a history in my family as my sister died from ovarian cancer. My question has always been this, I was examined for eight years before this was found.

Why can’t these tests be used as a regular, early detection tool for the discovery. All of the reports indicate that there is not substantial evidence to back this up. I am not an MD I am just a person who wants to do something about women suffering and dying unnecessarily. These women are not the only ones suffering, their family members are with them every step of the journey.

1a blood test of the serum CA 125 level (CA 125 is a high level of protein in the body)

2 transvaginal ultrasonography (TVU)

3 a pelvic exam

There is a new biomarker ...that has not been approved by the Food and Drug Administration for making a diagnosis of Ovarian cancer but only for monitoring the recurrence and progression of epithelial ovarian cancer. HE4 it will improve the ability to properly treat women in whom ovarian cancer has been diagnosed. The hope is it will be used in the future for an actual early detection in conjunction with the CA 125 serum.

Lets hope and pray that soon there will be the early detection break through we have been waiting for and end this nightmare.

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