Gratitude for Cancer?

This week’s blog post is a guest blog post by Marcia Donziger, Founder and Chief Mission Officer of MyLifeLine.org Cancer Foundation

Marcia

As a woman diagnosed at the age of 27 with Stage IIIc ovarian cancer, I went through a dark time.  According the stats, only 22% of women live another 10 years.  Although I can’t remember what I had for breakfast yesterday, I do remember the smallest details of my Diagnosis Day (D-Day).

It was March 1997 when I was living the “normal” life of a 27-year old – newly married, just bought a house, working full-time, and traveling.  That’s when I started feeling some vague symptoms like bloating and abdominal discomfort.

I asked my doctor for antibiotics assuming I had a bladder infection.  Never in a million years would I have guessed a grapefruit-sized tumor was growing on my left ovary.

“Could it be cancer?” I asked.

“No,” my doctor said confidently. “You’re too young to have cancer.”

On March 31, 1997, I was wheeled into the pre-op room on a gurney and started on an IV.  That’s when the medical assistant came in with a clipboard.

“Sign at the bottom,” he yawned, apparently bored.  I squinted to read the small print.  “I consent it is possible…. to die…or have a hysterectomy…”

I looked up at the assistant in a panic.  DIE?  HYSTERECTOMY?  Sure, I knew there was risk in surgery to remove a benign tumor, but I hadn’t considered the possibility of a hysterectomy or death.

My doctor had told me verbatim, “You’ll be back to work in a week.” These risks were never discussed.

After five hours of surgery, I woke up in the recovery room, my body uncontrollably thrashing around the gurney in pain.  I still felt as if knives were stabbing through my belly and back.

The doctor was hovering over me and matter-of-factly said, “I’m sorry.  You have ovarian cancer.  You’ve had a complete hysterectomy.”

So I lived.  But the other worst-case scenario happened, and I was devastated.  What I heard loud and clear was, “Cancer. You. Can’t. Have. Children.”

My New Normal:  Ovarian Cancer spread throughout my abdomen and lymph nodes resulted in a hysterectomy.  Infertility meant experiencing intense grief and loss for the future I had dreamed of.  Six months of chemotherapy meant an endurance game of illness, and if I was lucky, recovery.

Halfway through chemo treatments, I celebrated my 28th birthday.  But there wasn’t a lot to celebrate.  My marriage was crumbling.  Cancer puts tremendous stress on a couple.  Some couples can handle it together like champs.  We didn’t.  We divorced one year from the date of my diagnosis.

There I was – age 28, ravaged physically and emotionally, divorced, and dreading life in the single world, as a cancer survivor without the ability to have children.  But that’s a topic for another blog.

Today I am the proud mother of twin boys – now age 8 – who were born with the help of an egg donor and surrogate mom, Katrese.  She and I became fast friends during the pregnancy, which was very healing for me.  She was even one of the founding board members of MyLifeLine.org.

Today, I feel grateful.  Grateful for that traumatic day the C-Word crashed into my life and burned up the future I’d planned.

Today, I get to rebuild my future and help MyLifeLine.org grow as the Chief Mission Officer and be an advocate on behalf of survivors and the people who love them.

Today, I get to be a Mom to 2 incredible children.

Yes, that’s right.  Today, I am grateful for the ovarian cancer diagnosis that turned my life upside down and caused me to go down a new, uncharted path.

Today, I am confident there is beauty beyond the pain and the fear.

Today, I ask you, what are you grateful for?

About MyLifeLine.org

The mission of MyLifeLine.org is to empower cancer patients and caregivers to build an online support community through free, personalized websites. MyLifeLine.org is the only personal website service that consolidates all community communication needs in one place, while focusing 100% on people affected by cancer. Research shows that increased social support during a cancer diagnosis can improve outcomes. Every day, MyLifeLine.org provides free, personal and private websites to patients and caregivers to help them easily connect with family and friends, because every cancer patient should feel supported. To learn more, visit MyLifeLine.org and check out the MyLifeLine.org blog.

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Preventing cancer—it’s in the numbers

Today’s guest blog, in honor of National Cancer Prevention Month, is by Jeanne Ellinport, Managing Director of External Affairs for the Prevent Cancer Foundation.

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As we honor Cancer Prevention Month, I want to highlight some of the vast differences in cancer statistics across the world since we all know that cancer knows no boundaries.

Cancer is a disease that affects virtually everyone in some way. It disrupts our lives and in many cases, takes them too soon. It strikes unexpectedly and devastates men and women, young and old, people of every race, ethnicity and creed. It is blind to political affiliations, socioeconomic levels and geographic location.

In 2012, there were 14 million cancer cases worldwide. Approximately 8.2 million people—nearly equal to the entire population of Austria—died from the disease that year. Cancer is the second leading cause of death in the United States, responsible for an average of 1,580 deaths daily. That number is just too high.

Prevention and early detection are the most important keys to the future health and wellbeing of individuals and families around the world. SinceFebruary is Cancer Prevention month, it is not only a time to reflect on the progress we have made in the fight against this disease, but also to take bold steps toward dramatically decreasing the number of lives impacted by a cancer diagnosis.

Although these statistics are currently our reality, they simply don’t have to be. Only about five to ten percent of cancers have a strong hereditary link, and the World Health Organization states that cancer is avoidable to a large extent.  With the knowledge we have right now, up to 60%of cancer cases and more than 50%of cancer deaths can be prevented.

Cancer prevention can be realized, in many cases, through healthy lifestyle changes such as refraining from the use of tobacco products, maintaining a healthy weight, exercising regularly, eating a nutritious diet, practicing sun safety, receiving recommended screenings and immunizations, practicing safe sex and knowing family medical history. We recognize this is easier said than done, but we’ve seen the efforts work.

Nearly 18%of Americans use tobacco products, and one person dies every six seconds from a tobacco-related disease in this country.  Currently, 5.4 million people around the world die each year due to tobacco-related illnesses, and that figure is expected to soar to 8 million by 2030.

Obesity is poised to surpass tobacco as the leading cause of cancer within a few years. In 2014, more than 1.9 billion adults were overweight, 600 million of whom were obese. Most people in the world now live in countries where more deaths are caused by obesity than malnourishment or starvation. Projections are dire for underserved populations and those living in poverty, those with lower education levels and those who are uninsured.

Infectious agents are responsible for almost 22%of cancer deaths in the developing world and six percent in industrialized nations. Human Papillomavirus (HPV) causes cervical cancer, a highly preventable form of the disease, yet ravages the lives of young women who have no access to immunization, screening or treatment, particularly in low- and middle-income countries. With HPV vaccines now easily available, we must educate parents about this important cancer vaccine for both boys and girls. We have an opportunity to significantly reduce cervical, head and neck, anal and many other forms of cancer.

Cancer prevention has the potential to save millions of lives and it also makes compelling economic sense. In 2010, the cost of cancer care worldwide was $1.16 trillion, not including long-term care costs for patients and their families. Research shows that prevention efforts can save 4.5 million lives and almost $600 billion over the next 25 years in the U.S. alone, yet only three pennies of each health care dollar go toward prevention. Truly penny-wise and dollar-foolish.

Historically, the U.S. has been a leader in the fight against cancer, yet we are at risk of falling behind other countries because of competing policy and fiscal priorities. We need to invest in our health care and biomedical research infrastructure if we want to build on the progress we’ve already made and unlock the answers to our deadliest questions. I ask you to join together to advocate for increased funding in cancer prevention research and to promote and protect prevention strategies

Cancer crosses social, political, and geographic lines, but so does the force of change when we work together.  Let’s work together to make cancer history for generations to come.

About Prevent Cancer Foundation:
The mission of the Prevent Cancer Foundation is saving lives through cancer prevention and early detection. Their vision is to Stop Cancer Before It Starts!

The Prevent Cancer Foundation advocates and supports the prevention and early detection of cancer through Research, Education, Advocacy and Community Outreach. To learn more, visit http://preventcancer.org/.

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Pink, black and white: the real color of breast cancer

racial disparity blog imageWhen it comes to living with breast cancer, there are no shades of gray; black women are significantly more likely to die from breast cancer than white women. Though February is nationally recognized as our Black History Month, the racial disparity that still exists in our health care systems proves that total equality is still an ongoing goal for the future.

In 2014, the Sinai Urban Health Institute and the Avon Foundation for Women conducted a study of the death rates of white and black women due to breast cancer in 50 of the nation’s largest cities over a period of 20 years. The results were striking:

  • Though white women are more likely to be diagnosed with breast cancer, on average black women are 40% more likely to die from it.
  • The most lethal city is Memphis, TN where black women are more than twice as likely to succumb to the disease.
  • Cities with the highest disparity rates are cities where there are geographically separated medical centers that serve either primarily black or white patients (with little racial mixing).
  • The mortality rates were relatively even until 1995. After that, white women’s rates declined while black women’s rates stayed the same.

All of these startling figures beg the question why?Why did things change so drastically in 1995? Many researchers, including Dr. Whitman of the Sinai Urban Health institute, linked the decline in white women’s deaths with the rise of early detection practices like mammograms and clinical breast exams. These practices became more readily available to white women than black women, leaving them with fewer access opportunities and lower quality screening procedures where cancers were simply not detected.

Treatment cost is another major concern. The second highest indicator of racial disparity (behind the separated care centers for whites and blacks) was poverty. Cities with high percentages of people living under the poverty line were strongly correlated with a higher racial gap. For the women living in this state, of which the majority was black, it was their economic position which barred them from obtaining the same treatment options as white women.

Nobody, regardless of race, socioeconomic status or anything else, should be restricted from getting the help they need. That’s why CSC has dedicated so much time and so many resources into setting up channels for people to discuss their screening and treatment options. If you or someone you love is worried about their access to medical facilities, visit our Cost Information site to learn more about places to go for quality yet affordable screening, or check out our free Cost of Care eBook here. In addition, for questions specifically related to making a cancer treatment decision, CSC’s Open to Options is a service that looks at each case and customizes its approach on a person by person basis.

Cancer is enough of a battle without having to worry about substandard detection practices or the cost of health care, and we want to make sure that you receive the highest quality care possible.

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Understanding the impact of cancer on caregivers

caregiver webinar imageWhether you love this holiday or completely despise it, Valentine’s Day is this Saturday. If you’re a person who loves Valentine’s Day, this is a day to celebrate love and companionship. But when your Valentine is living with cancer and you’re acting as the caregiver, this day can take on a deeper and more complex meaning. Caring for a spouse can be extremely challenging. According to the National Quality of Life Survey for Caregivers, a caregiver spends an average of eight hours a day providing care and support to their loved one, and many caregivers feel just as much distress, if not more, than the patient does.

Whether it’s Valentine’s Day, or just a typical day, the Cancer Support Community is committed to providing support and resources to caregivers, so they can provide support to their partner.

The Cancer Experience Registry: Caregivers, is just the latest example of CSC’s commitment to understanding the impact cancer has on caregivers. This project is an expansion of CSC’s Cancer Experience Registry, which, since its launch, has collected over a million data points on more than 7,500 people who have had cancer. Similar to the patient Registry, the Cancer Experience Registry: Caregivers will ask caregivers a series of questions about their experience and will connect them to a network of support.

“For decades we have known that cancer impacts not just the people who are diagnosed, but those caring for and about them as well,” said Kim Thiboldeaux, CEO of the Cancer Support Community. “The registry for caregivers will help identify the unique challenges of this community and create better resources to address their needs.”

One recommendation CSC often makes to caregivers is to have their own support system in place—people who you can lean on for support, and who know just how you feel. This new Registry will be able to act as a support system for caregivers by allowing participants to compare their responses to survey items with other members of the Registry and be part of a community of caregivers.

“The Cancer Experience Registry: Caregivers is more than just a research project-it is also a community where people can listen to the stories of others and find professional and peer support when they need it,” said Joanne Buzaglo, Ph.D., Senior Vice President of Research & Training at the Cancer Support Community.

To join this exciting new initiative and make your challenges as a caregiver known click here, and click here for more information about the Cancer Experience Registry: Caregivers. Also, tune in to this week’s special episode of Frankly Speaking About Cancer to hear more about caring for your spouse on Valentine’s Day, and every day.

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Remembering that cancer is “not beyond us”

CER report front coverToday is World Cancer Day, an opportunity to raise awareness of cancer and its impact on local communities all over the globe.

This year’s theme is “Not Beyond Us.” This tagline can be interpreted and applied in a few different ways. One idea that came to my mind is the impact that cancer continues to have even after a person is finished with treatment. Life doesn’t just go back to normal. Cancer survivors are often faced with challenges even after they’ve been declared cancer-free.

Many worry about the possibility of recurrence—they’ve even coined the term “scanxiety” to describe the emotions leading up to follow-up tests, such as X-rays, CT scans and MRIs. Many cancer survivors also experience long-term side effects of cancer and its treatments, such as neuropathy or chronic pain.

If you have completed cancer treatment and are experiencing challenges adjusting to life after cancer, the Cancer Support Community’s Helpline at 888-793-9355 is a good place to start to get support. You can also learn more about cancer survivorship on our website.

The Cancer Experience Registry is also a great opportunity to give back to others going through cancer by sharing your experiences. You do not have to be finished treatment in order to join.

With nearly 14 million cancer survivors living in the U.S., chances are you probably know someone who has had cancer. This World Cancer Day, take a moment to learn how you can support yourself or someone you know, and join the conversation on Facebook and Twitter by using the hashtags #WorldCancerDay and #NotBeyondUs.

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