Greetings from the CSC Staff Retreat

IMG_8244-croppedIt takes a team to ensure that no one faces cancer alone, and with an estimated 1.6 million people diagnosed with cancer every year, we’re glad to have a great team assembled here at CSC.

This week we were reminded of the importance of our mission at our annual staff retreat–one of the only times out of the year that the entire CSC team gets to come together in one room and discuss ways to best provide the highest quality social and emotional support to all people touched by cancer.

This year’s retreat was held in Washington D.C. at the CSC Headquarters office, and it was a great opportunity for our newest staff members to meet and share ideas with staff members who have been with CSC for 15+ years. Besides reviewing (and maybe competitively quizzing each other) on the long history of CSC, we also planned for  a long, successful future.

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The trouble with accessing gynelogical cancer care

A new study finds that many women in the United States live more than 50 miles from the nearest doctor specializing in women’s gynecological cancers. This health disparity makes it difficult, if not impossible for some women to have access much needed care.

The study, conducted by the University of Pennsylvania, found that about 36% of the counties in the United States are located more than 50 miles from the nearest doctor that focuses on gynecological cancer. This affects about 15 million women.

Such limited access to this health care can lead to women receiving a late or a misdiagnosis. It can also prevent women who have been diagnosed from receiving proper and consistent care.  This could even prevent women from entering into clinical trials or having additional treatment options.

Gynecological cancers include: cervical, ovarian, uterine, vulvar, vaginal and fallopian tube. For all of these, early detection greatly increases the likelihood of going into remission. However, currently cervical cancer is the only type that has a screening test.

Due to the difficulty to detect some gynecological cancers, on top of the geographic disparity, it is extremely important for women to learn the signs and symptoms of gynecological cancers. This chart on the right can help. blog chart

If you ever have any of these symptoms, get to your gynecologist as soon as possible, and if you do not have one, try to find a clinic in your area. If your doctor does send you to a gynecological cancer specialist, try to find the one nearest to you and look at your transportation options.  The American Cancer Society has a Road to Recovery Program that may be available in your area. Local charities may also have transportation services available. If the treatment center is very far from where you live there are also lodging programs available.  Here is a list of more programs.

If you are living with a gynecologic cancer and are looking for support, visit www.CancerSupportCommunity.org or give our Cancer Support Helpline a call at 888-793-9355.

You can also share your unique experience with all types of cancer through the Cancer Experience Registry. Joining the registry brings you into a community of people who have been diagnosed with cancer, or are caregivers to cancer patients. Telling your story can help others now facing cancer, and it will help researchers better understand the full impact of cancer. For more information, please click here.

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A Day in the Life of a CSC Affiliate

DSC_9226UF BACKGROUNDToday’s blog post is by Diane Robinson, the Program Director of the Cancer Support Community at Orlando Health. This Affiliate is CSC’s second hospital partnership. Click here to learn more about the Cancer Support Community at Orlando Health, and for a full list of CSC’s Affiliate locations click here.

Q: What is the name of your Affiliate?

      A:The Cancer Support Community at Orlando Health

Q: How does a hospital partnership work? How does this type of support setting differ from a traditional Affiliate?

A: This is a new kind of partnership where the affiliation is with a hospital. Most support groups, education classes, and healthy living events all take place with-in the hospital walls. This is in contrast to most other CSCs that are stand-alone facilities and are their own 501(c)3 charities.

Q: What does a typical day look like at UF Health Cancer Center look like? What types of programs and services are taking place on a daily basis?

A: Check out our calendar!! There are too many things to write in a couple of sentences.

Q: What can someone who has never been to UF Health Cancer Center expect on their first visit?  

A: The Cancer Center itself offers an integrative approach to oncology, so new patients are given a support survey to see what one of the additional programs we offer would be of most help to them.

Q: How can they benefit from coming to the center? And how can their families and caregivers benefit?

Scott Cook PhotographyA: Having a life-threatening illness is extremely stressful, and most of our programs help with managing that stress. It can be as simple as chatting with another patient about how they coped with nausea, or as involved as enrolling in a series of 8 mindfulness-based stress reduction classes.

Q: What would you say to someone who is nervous about attending a support group here? Or isn’t sure if this right for them?

A: The best way to find out is to give it a try. I always say try out a few different events and see which one resonates. If yoga or tai chi classes aren’t a good fit, perhaps try our arts in medicine program.

Q: What kind of impact has the center had on those who have visited so far?

A: Very positive feedback right now! Some patients say it has helped manage their anxiety not only about cancer but in their every-day lives.

Q: What is your busiest time of year? Why?

A: September and October, with so many events focusing on gynecological and breast cancers we are very much in demand!

Q: What are some of the events that you hold for patients and their families? Why is it important to offer events in addition to just counseling or treatment sessions?

A: Counseling is wonderful but it isn’t always some

Q: How would you describe the community of UF Health Cancer Center?

A: Growing, innovative and cutting edge – delivering a whole new level of support inside a vibrant cancer center.

Q: What’s the most rewarding aspect of the UF Health Cancer Center?

A: Without a doubt meeting the incredible patients we have and hearing not only their stories, but how we have helped them cope during this difficult time of their lives.

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The challenge behind ASCO’s “Value Framework”: The value of a drug or the value of a life?

This week’s guest blog is by Meghan Rodgers. This is Meghan’s story on life with her fiancé Dan Waeger and his journey with cancer. Dan founded the National Collegiate Cancer Foundation (NCCF), an organization that provides financial support to young adults who are impacted by cancer and pursuing higher education.

dwaegerIn May 2007, I met the man who would eventually become my fiancé after just 10 months of dating. When we first met, Dan casually mentioned that he was a cancer survivor. It was hard to believe. He was 24, and we were standing in a bar after playing football in a social sports league. He certainly didn’t look or act like he had cancer. Ours was a whirlwind romance, and within a few weeks we became inseparable. We went to baseball games, started training for a 5k and played hooky to go to a water park for his birthday. A few months into the relationship we took a trip to Boston where Dan told me he loved me for the first time by hiding the words in a crossword puzzle he created to keep us busy during the flight. I knew from very early on that Dan was “the one”.

Dan had already been living with cancer for two years by the time we met. At the time he was diagnosed he was in graduate school, coaching a Division 1 golf team and training for a marathon. As a 22 year-old athlete with no family history of cancer, the diagnosis was a shock. Within the first year of his diagnosis, two lines of treatment failed to produce any measurable results, and his quality of life was impacted. He received chemotherapy and radiation and experienced almost every side effect to treatment that you can imagine—nausea, vomiting, edema and hair loss (though he didn’t have much to begin with). While odds were narrowing that there would be viable treatment options, Dan and his doctor did not stop working together to evaluate options. And ultimately they did find a game changer in a targeted therapy.

While on this drug, Dan was able to live on his own terms as a regular guy. It sounds silly to say, but I am so thankful for that drug, because without it, I would have never met him. Recently, in attempt to push back skyrocketing cancer drug prices, the American Society of Clinical Oncology (ASCO) proposed a 100 point formula to simplify the complex maze of statistics to help determine whether a drug is worth the expense by weighing its ability to extend life against its cost and side effects. In theory, the spirit of what ASCO is attempting to do is reasonable–helping patients navigate the overwhelming amount of information with a doctor they may barely know to make a decision about how to approach their treatment. What caught my attention was the comparison of multiple drugs, all of which Dan had been on at one point during his treatments. And the one that gave him the most life scored a zero. That was hard to read. The drug to which I owe my time with Dan, was literally last. Yet, based on our experiences, the drug was the least toxic and produced the best quality of life. Other drugs used to treat the same cancer scored much higher on the scale, yet left Dan sick for days, covered in a rash or struggling with thrush so badly he could barely eat.

ASCO’s scoring system awards points for Clinical Benefit (achieving overall survival, progression free survival or response rate), toxicity and palliative care. This score is then compared to the overall cost of the drug. I am not an expert, but as someone who sat beside a loved one while weighing treatment options, I have several issues with this formula:

1. First, clinical benefit varies widely on a patient-by-patient basis. Some drugs work well for those with a specific genetic mutation, and those without that mutation will see zero benefit. In our case, a drug that worked wonders for others but left Dan with a rash that resembled Freddy Kruger.

2. Second, the formula gives great weight to clinical benefit vs. toxicity by a 4:1 ratio. While some patients may immediately gravitate towards the drug with the greatest statistical chance of extending their life, this formula does them a disservice by not taking into account the horrendous side effects that go along with the treatment.

3. On that note, where is a measure of the chronic, long term side effects in the ASCO formula? Those with Dan’s type and stage of cancer have a 5 percent chance to survive 5 years. While that should provide hope to the optimistic, what it lacks is the realistic view of what that life will actually be, and if it’s even sustainable for more than 1 or 2 treatments.

4. I am almost offended that the only measure of cost included is that to acquire a drug. What about collateral costs? For example, the time spent out of work for both the patient and caretaker can be a huge consideration, as well as incremental costs to manage side effects. In addition, many patients and loved ones have to travel long distances or hire additional resources to manage their lives, including mental health services, childcare or even a cleaning service. And there is no way to measure the qualitative impact of a life interrupted by treatment in terms of the loss of enjoyment of daily life.

5. Lastly, where are the guidelines to adapt this framework to a specific individual? How does a doctor work with a patient to take their needs and desires into consideration and adjust the formula accordingly? I assume that in a perfect world, a doctor has the time to consult a patient and involve their family, but that is not a reality. For example, my insurance begins to charge extra once I’m with my primary care doctor for more than 15 minutes. I gladly pay this amount, but the idea that other patients will have enough information and gain a level of comfort to make any medical decision, let alone one about cancer, is absurd. How does ASCO’s framework allow the patient to participate in a meaningful dialogue to truly decide how to weigh the question, “Am I willing to endure awful side effects for a chance to live the longest (which may only be several months) or would I accept a shorter amount of time with a better quality of life?”

Where in ASCO’s scoring system does it quantify the benefit of extending a life? Had this system been in place when Dan first considered the targeted therapy that was so successful for him, he may have declined and been dead in a few months. What a waste that would have been for the world. Dan was able to complete graduate school and work full time at a cancer advocacy organization raising funds to improve the quality of care for people with cancer. And, he created hundreds of thousands of dollars in income for himself, and received benefits that funded his treatment. Dan founded an organization in the National Collegiate Cancer Foundation that has raised over $300,000, awarded close to 200 scholarships and helped thousands more young adults impacted by cancer. How are those gains used to offset the cost of a drug in ASCO’s formula?

And on a personal level, how can you measure the value of extra time for anyone? In the several years on ASCO’s “zero” drug, Dan was asked to be the godfather to a beloved niece, and was able to hold his other nieces and nephews when they were born. He was his brother’s best man, celebrated his friends’ engagements and watched his friends get married. He inspired every person he met by openly sharing his cancer journey, and he comforted those dealing with the disease by being open about his. Dan was able to travel, work, play sports and dream of the future. And he met the love of his life, and in even just a short time, made her world complete.

Sadly, Dan and I were never able to get married. He passed away March 16, 2009, the day before my birthday and 12 days before our wedding day. Ultimately, the targeted therapy–the one that scored a zero according to ASCO–that had worked for so long, simply stopped working, and we were forced to turn other options which sustained his life for several months, but at a severe cost. In what would be one of the last trips of his life, Dan and I traveled to the pharmaceutical company that produced ASCO’s “zero” drug so that he could deliver a patient speech to its doctors and researchers. I am so thankful I held onto it because his words couldn’t be more relevant today.

“Rarely do you hear someone say that chemotherapy is a gift. But I can honestly say this drug was a gift.  It made life so easy. Recovery time was so short. I would receive treatment on Friday and be back to work by Monday! I’d go drinking with my boys. I’d travel, enjoy a round of golf, have the stamina to go for a mile or two jog, eat Thanksgiving dinner and hold it down, and most importantly, the drug allowed me to meet my fiancé. 

I’m thankful for the drug because it allowed my fiancé to fall in love with me, a cute lovable happy-go-lucky guy that swept her off her feet with a carriage ride around the D.C. Capitol on our very first date.  A guy that put up a poster size message on Valentine’s Day on the side of a building for all to see.  She didn’t fall in love with cancer Dan, she fell in love with regular old Dan – “Dan in real life,” and this drug gave me that sense of normalcy. 

While going through this journey, the survivorship component becomes that much more important.  Innovative therapies with less toxicity and an improved quality of life are what are important to the patient. It’s about giving cancer patients a chance at a normal life.”

I only wish for others in a similar situation that they have doctors who will take the time to develop a plan that treats the patient, not just the disease, and weighs the benefits of life in addition to the cost of a drug. And while I wish desperately that Dan was here, I know he would make the same treatment choices all over again if it meant one more day with us.

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How the Declaration of Independence applies to living with cancer

“Now I am face to face with dying. It is up to me now to choose how to live out the months that remain to me.

ribbonThese words came from Oliver Sacks, the renowned professor, neurologist, author, amateur chemist and now ocular melanoma patient who recently was told his cancer could not be stopped. And Oliver Sacks is right—everyone living with terminal cancer has a choice about how to live through their disease. And if it were me, I’d live with the immortal words of Thomas Jefferson in mind.

Life, liberty and the pursuit of happiness are three qualities guaranteed to every American by the Declaration of Independence, and nothing—not the government, not a disease and certainly not a prognosis—can take those qualities away from you.

So if the years of your life are less, let your life’s experiences multiply. Let them grow exponentially, impossibly, erratically; let them fill up every corner and crevice of your being. Don’t just stop to smell the roses, feast on them with your eyes. And when you’re done, go and pick them to give them to someone you love, and watch them smile. Soak up everything, from the stars on a moonlit night to the endless stream of cars in a six o’clock traffic jam; headlights and stars both lighting the darkness to guide us onward.  As you blaze onward too.

Don’t dwell on the ‘liberties’ or actions denied to you because of your changing condition; dwell on the freedom you have to discover new interests, new hobbies, new routines and all people. Climbing Mt. Everest may not be possible, but there’s nothing to stop you from traveling to the town just an hour away or exploring the lives of the neighbors who always wave from the driveway. Explore yourself. Get lost in your mind, a galaxy of memories, insights, goals, connections and above all, love.  And once you know yourself, be yourself. The most common regret nurses found is not living true to oneself—don’t compromise this part of you. Don’t give up this freedom.

Pursue happiness, but also let it find you. Seek out the ones you care about, and let yourself be happy with them without past grudges or harbored guilt obstructing you. Forgive mistakes that are blocking your happiness, whether it’s their fault or yours. And if there are days when you feel sad, then feel sad! Rattle the heavens with your cries; shake the earth with a wrath to match Achilles. But don’t forget still to laugh and to smile and to jump for joy at the slightest thing, because that is as much a part of life as you are. Pursue reasons to make yourself happy.

Living with terminal cancer doesn’t mean fading from existence. It means living out every day with the determination to hold the American founding fathers to their end of the bargain; with the determination to maximize our rights to life, liberty and the pursuit of happiness.

If you are seeking support for living with terminal cancer, call CSC’s Cancer Support Helpline any time Monday – Friday 9 am-9 pm (ET) at 1-888-793-9355, or check out our online support resources here.

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