Ovarian Cancer at Twenty-Three Years Old: From Hopeless to Helping

                      

Ovarian Cancer at Twenty-Three Years Old: From Hopeless to Helping

            I have chosen to discuss the personal and public issues of ovarian cancer after a close friend of mine, Diem Brown, discovered she had cancer at only twenty-three years old. After a successful remission, Diem vowed to help others who suffer through personal and medical hardships by creating the first and only Patient Gift Registry, www. Medgift.com. This unique online registry allows patients to have a medical registry-similar to that of a wedding, where instead of blenders and dishware, patients are able to create an online listing of various items they want or need that will assist with medical expenses. In this final essay, I will research the personal problems my friend, Diem experienced along with other stories I have discovered online through various chat rooms and the Cancer Survivors Network through the American Cancer Society.  This will include how cancer has affected Diem’s life, her cancer treatment and the medical care that was available to her and others. I will cover a real-life account of what cancer is like from the eyes of someone who lived through it, hid it from family and friends and managed to triumphantly defeat it.  I will then identify the public issues associated with ovarian cancer which include healthcare costs, treatment, and lack of insurance. I will discuss how possible public policies may contribute to many of the problems patients with ovarian cancer face on a consistent basis and suggestions to resolve it.

Diem Brown, a beautiful reporter living in Los Angeles, California had just been cast for a MTV reality show.  A few weeks before she was set to embark on this new opportunity, she received life altering news. Imagine being told you have Stage II Ovarian Cancer at the age of twenty-three! When I met Diem in 2005, unbeknownst to me, it was just a month since she had been given her diagnosis.  Today, I count her amongst my dearest friends. 

Before her diagnosis, Diem went to have a benign tumor removed from one of her ovaries. One year later, she then went to the doctor for her yearly check-up after noticing some abdominal swelling. It was that day, alone, she found out she had ovarian cancer. When she first heard the news, she told me she literally dropped to her knees and ran to her car. Shocked and in disbelief, she drove around for hours contemplating how this diagnosis was going to change her life, if not, end it.

Diem, by her own admission, has always been a healthy girl. She is vegetarian, active, does not smoke and rarely consumes alcohol. She was not familiar with cancer, let alone ovarian cancer. Her world was slowly crashing in around her when it was supposed to be a very exciting point in her life. She was afraid to tell her friends and family; her own mother recently passed away and she was terrified to see her father, a strong military man, have his heart broken all over again.

Her first instinct was to find information on ovarian cancer and the rate of survival. She spent countless hours on the internet and in chat rooms discussing her own situation with others experiencing the same. Initially however, she did not find this comforting because trying to understand other people who shared the same fears that she had only solidified and confirmed her thoughts. She went into a deep depression and refused to leave her apartment. Ovarian cancer begins in the ovaries and is the fifth most common cancer among women and more fatal than any other reproductive cancer. She was confused, part of her wanted to ignore it as if it was not really happening to her, another part of her thought she would soon see her mom again. After she overcame her initial shock, she thought this should be a battle she should fight alone. She did not want to worry her family or her friends, especially after the death of her mother. She also still wanted to compete on the MTV reality show and felt that if she had a limited time on this Earth, she was going to make the best of it. She did not want to feel hindered or incapacitated in any way despite the physical and emotional turmoil she was feeling inside.

She wanted to be brave and chose to go to her first doctor’s appointment alone. She walked in the office and after seeing other patients without hair and wearing oxygen masks, she nearly passed out. At that moment, she realized she could not do this alone and needed to tell her family.

"Hearing my Dad's voice crack as he made his best attempt to reassure me just broke my heart." Diem told me about the dreaded conversation with her family. "Of course they were supportive, and I did feel better after telling them. This is not something I--or anyone should have to go through alone." Feeling the support and unconditional love from her family, Diem decided to continue her research regarding ovarian cancer and treatments. She knew chemotherapy was vital to her survival and was terrified of losing her hair. "It is not about the vanity, of course a girl wants her hair, but I knew I could not hide from this "issue" if I saw illness in the mirror." said Diem. "I knew that not only would people closest to me know, but strangers on the street would be also aware that I was...different."

Diem received her doctor’s approval to compete on the MTV reality show, but went through two rounds of chemotherapy before leaving. “It was horrible, I won’t deny that, and it’s very long and uncomfortable…oh, how I hated the tingling. It is like a war zone with your body,” Diem described about her early experience. “I had to take several different medications for pain, fatigue and nausea during filming of the show.” She also explained she felt exhausted and slept a lot but was primarily concerned about injuries. “Your blood doesn’t clot well when you are on chemo and your immune system is weakened so those thoughts were consistently on my mind.” 

Diem bravely disclosed she had cancer to some of her cast mates. I was one of them. She didn't look sick and certainly didn't act as I would have suspected someone with "cancer" to behave. She was athletic, strong with long hair and loved to dance. She didn't want any of us to feel sorry for her and confidently told us she was going to beat it and she would be back for another season. I didn't doubt her.  However, her doctor did inform her that upon her arrival home, she could anticipate an immediate long and strenuous bout with chemotherapy.

After she returned home, she never went to a single doctor’s appointment alone, she followed every order her doctor suggested and after several painful months entered remission. She officially found out she was in remission on St. Patrick's Day in 2006, and was so elated she threw on a green wig to celebrate with her friends.  Diem was an instant "fan favorite" of the MTV program she been on, so she was offered another opportunity on the show. However, she was still in remission and didn't have any hair. Diem decided to go in spite of not having the long hair she had on her first season of the show. She was happy, hopeful and wanted to share there is a chance to beat cancer, and she was the living proof.

When Diem returned to the show, she wore a different wig every day, dependent on her mood. One day would wear a bright pink wig that was shoulder length and the next day, she would become a curly blonde. Other female cast members would wear one of her many wigs to show support. One particular afternoon during filming, the cast had to jump in a pool of water. Diem was hesitant; she had never been seen without her wig before; certainly not on national television! The camera slowly zoomed in on her as she pulled the wig off of her head. The cast stared at her wide-eyed and without missing a beat; Diem courageously jumped into the water and started the competition. People cried, and I still commend her for being so strong. It is hard enough to go through cancer, but to be seen in such a vulnerable state on national television is beyond inspiring.

Today, Diem is a healthy 28 year old woman, an entertainment reporter and founder of MedGift. The doctors removed one ovary and part of her fallopian tube. Diem isn't sure if she can have children one day or not but told me, "I can't live my life worrying about things I cannot control. I'm healthy and want people to know there is support out there despite feeling alone and scared."

I decided to look into some ovarian cancer chat rooms myself to see the type of support one can gain from fighting this cancer. Unfortunately, it was difficult to find a chat room with people in it! However, I did find some inspirational messages and support on various message boards and Facebook support groups. I learned that eating green vegetables rich in DMI can reduce the size of ovarian cancer tumors and World Cancer Day is February 4^th. Some people shared fundraising efforts and provided links to their own or a loved one’s individual story. Other’s showed compassion, acceptance, and prayer. One woman, Darcy Rizzo, discussed symptoms while encouraging others to get blood work done. People explained different types of medication and I discovered that the oral tablet, Etoposide costs $2,000 dollars a month and Medicare will only pay 80%. Reading about this particular woman’s frustrations with medical expenses was disheartening.

While looking for political advocacies in ovarian cancer, I came across several issues that many women have to address despite their already terrifying diagnosis. Medication and treatment is costly and there are three main forms of treatment. The first form is removal of the cancer from the ovary, the second is chemotherapy which uses drugs to kill and eliminate the cancer cells and the third form is radiation treatment which is only used in particular cases. Radiation treatment uses very high energy X-rays to kill cancer cells. Treatment is based on each individual, dependent on their health, age, the severity or stage of cancer and the histologic cell type.

I joined the Cancer Survivors Network through the American Cancer Society so that I was able to communicate with cancer survivors for research. I was surprised at how emotional I felt from reading complete strangers circumstances. I noticed that once several patients were in remission, they were terrified of recurrence. One woman, only known on the message board as “Flame” was worried that she would have a recurrence and not see her children have their own babies. She remarked how the she read the survival rate to only be five years. Her plea for support from others was not only touching, but heartbreaking as well. To read other survivors tell her that she is an individual and to pay no mind to statistics was very inspirational. From fears of claustrophobia during PETscan (Positron Emission Tomography) to worrying about side effects of medication; this only proves that even after these women have successfully “beat” ovarian cancer, they will forever be emotionally scarred and perhaps secretly terrified that this cancer may one day resurface in their lives. I’ve discovered it is not only the patients themselves on these message boards, but husbands and children seeking answers or support for their families’ private pain.

To pay for the cost of medical expenses associated with ovarian cancer can be a heavy burden. Etoposide, an anti-cancer chemotherapy drug typically used in cancer of the lung or testicles can also be used to treat ovarian cancer. This drug can cost as much as $2,000 a month and Medicare will only pay 80% according to one woman who discussed her medication on an online message board. However, the unbelievable price of Doxil, which is used to treat ovarian cancer that is resistant to improvement or has even worsened, was billed to one woman’s private insurance company $30,800 for one single round! She went on to say that her insurance company paid more than $330,000 in one year for her cancer treatments—without any surgeries. Another expensive drug used to treat ovarian cancer is Topotecan. I found this cost comparison chart below to give an idea of the medical costs of Doxil vs. Topotecan is the United States. Conclusion: Doxil was actually found to have cost savings of $6,017/patient over Topotecan for relapsed ovarian cancer patients in the United States. ^[1] In researching to discover which drug would be more effective, it appears it depends on the individual patient. One woman claimed that Topotecan caused extreme fatigue and the schedule of treatment difficult to maintain. Another said it was a manageable chemo drug that caused no discomfort. Unfortunately, it seems each patient needs to discuss with their doctor their best option.           

Mean Cost ($ per Patient)

	US Costs
Parameter	Doxil (n=118)	Topotecan (n=117)
All AEs	$985	$6,435
Selected AE costs*
Anemiaå	$26	$156
EPO	$151	$689
Neutropeniaå	$98	$2,184
G-/GM-CSF	$84	$2,323
PPE	$263	$1
Drug + Admin	$13,571	$14,138
TOTAL	$14,556	$20,573

Why do these drugs cost so much? Possibly because the drug companies primary incentive is to operate for profit. Another reason is for the cost of research and the economics involved with marketing and selling the drugs to sick patients.  “It takes about 7 to 10 years and an average cost of 500 million dollars to develop each new drug. This money is spent before the FDA approves the drug, and if the drug is not approved, the company loses the money. For instance, only one out of every ten thousand discovered compounds actually becomes an approved drug for sale. Much expense is incurred in the early phases of development of compounds that will not become approved drugs.  Prescription drug companies spend a lot of money on marketing due to competition and generic brands. Patients need to be sure to find a pharmacy that does participate with their insurance plan.

 It can be difficult for someone with ovarian cancer to manage their healthcare costs. First and foremost, the patient needs to be sure that doctors and hospitals she plans to use are in her healthcare network. Patients need to keep track of their insurance plans and their claims. To receive a second opinion, they need to be aware of the financial risks that may be included from their healthcare provider. Of course, if there is no insurance, the patient can check with the hospitals financial aid department to work out a payment arrangement. But the major issue is why they don’t have insurance.

            WHY DON’T THEY HAVE IT?? I joined the Cancer Survivors Network through the American Cancer Society so that I was able to communicate with cancer survivors for research. I was surprised at how emotional I felt from reading complete strangers circumstances. I noticed that once several patients were in remission, they were terrified of recurrence. One woman, only known on the message board as “Flame” was worried that she would have a recurrence and not see her children have their own babies. She remarked how the she read the survival rate to only be five years. Her plea for support from others was not only touching, but heartbreaking as well. To read other survivors tell her that she is an individual and to pay no mind to statistics was very inspirational. From fears of claustrophobia during PETscan (Positron Emission Tomography) to worrying about side effects of medication; this only proves that even after these women have successfully “beat” ovarian cancer, they will forever be emotionally scarred and perhaps secretly terrified that this cancer may one day resurface in their lives. I’ve discovered it is not only the patients themselves on these message boards, but husbands and children seeking answers or support for their families’ private pain.    

            In addition to the high cost of medication and treatment, the expenses in regards to the regular life patients are desperately trying to maintain, become nearly impossible to finance. For example, Diem Brown was just twenty-three years-old when she received her diagnosis and had beautiful, long blond hair.  During her treacherous bout with chemotherapy, she lost all of her hair. Her body was a war zone and she felt like she had her femininity “cut” out of her and the loss of her hair only amplified her emotions. She wanted a wig, but it was expensive. Her insurance was not going to pay for superficial items that do not have a medical purpose. Any money she did have went to pay bills as she was no longer able to work. Depressed and financially strapped, she came across a girlfriend’s wedding registry while at home one afternoon. As she looked through the list of monogrammed towels, blenders and silverware, it dawned on her that she wished she could create a registry for patients as opposed to brides.

MedGift, is the first and only patient registry which is similar to a bridal registry. This allows a patient to register for all things needed for treatment and/or recovery. "Everyone asks how they can help or what they can do," Diem said. "This gives the opportunity for people to help a patient with medical costs, wigs, wheelchairs and even groceries. Non-monetary items can be organized as well, such as babysitting and transportation." For the past six years, Diem has passionately dedicated herself to helping others suffering from cancer, a car accident or even a war veteran in need of treatment. “I’ve been through it and it’s hard, but you don’t have to be alone. People who love you do want to help, some just aren’t sure how. This gives them the opportunity to see how they can help, by looking up your registry. Instead of a wedding registry about joining two lives, this is about fighting for a life.”

This unique gift registry initially began with the desire for Diem to have a nice, realistic wig to make her feel pretty again, but has grown into nationwide medical social network to inspire and create hope in patients. MedGift is composed of three primary sections: needs, wants and wishes. The “needs” section is related to medical expenses with treatment and recovery. This will enable supporters to help provide financial assistance via the secured website directly to the patient who can choose and accept their offerings. The “wants” section is for help with wigs, meals, magazine subscriptions and other items that may not be deemed by society as actually being necessary. However, this still provides the patient with emotional and physical security while coping with treatment and recovery. Finally, there is the “wishes” section that assists the patient with childcare, transportation and even prayer. Each patient has their own profile page where they can update their loved ones on their health and daily successes.

The public medical policies and issues arising from high costs of healthcare and lack of medical insurance are what inspired Diem to initiate MedGift. This registry helps create a way for family, friends and even strangers to contribute their money, time and prayers in consideration of a patient.  Patients should also educate themselves on helpful patient advocacy groups such as The Patient Advocate Foundation, where they help with medical debt crisis and insurance issues. In addition to MedGift, knowing and understanding their insurance benefits and researching which hospitals are in their healthcare network; can help patients manage their expenses more easily and focus on what really matters: getting healthy again.

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[1] . "American Society of Clinical Oncology: Cost-Identification of Doxil vs. Topotecan for Relapsed Ovarian Cancer in the United States." asco.org. Sanofi Aventis, 2012. Web. 15 Mar 2012.