Advocacy Group Provides Information, Resources for Patients Over 65

In 2013 when Traudl Taylor complained of leakage coming from her nipple, her physician’s first thought was melanoma. After a series of biopsies, Traudl was diagnosed with triple-negative breast cancer, with three separate tumors in her left breast and Paget’s disease.

Traudl, 69 at the time, had few relatives to turn to after her diagnosis as most of her family lives in Europe. Thankfully, her daughter Renee Taylor stepped in and cared for her mom during treatment until she was declared “cured.”

Many people over the age of 65 diagnosed with cancer face issues related to their age, but not all are as lucky as Traudl to have someone fighting for them and helping them along the way. To distribute information and services for cancer to older people, Renee created the nonprofit organization CORAL 65.

Renee and Traudl recently spoke with CURE to discuss the importance of giving older people equal opportunity for treatment and the goals of CORAL 65. The following is edited for brevity and clarity.

Why is it important for doctors and nurses to be more informed about older patients with cancer?

Renee: It’s important for them to be informed because older patients have different needs with respect to support and guidance, particularly those who are alone and those on a fixed income. When my mom was diagnosed, if I were not here, she would not have had any family or close friends to turn to.

I think this day and age with technology, there’s an assumption that everyone has a computer and uses email, Twitter and Facebook to find what they need. For older people, that may not be the case. I think the medical community needs to be more sensitive to traditional methods of communication.

Traudl: When I was diagnosed, it was like a ton of bricks fell on me and I wondered what I would do next. The doctor who told me I had breast cancer instructed me to go to the front desk to collect business cards so I could put together a team. I was so lost and confused. I would have been alone if Renee hadn’t been here.

How is treatment different for elderly patients?

Renee: Sometimes there’s a lack of empathy because many of those who are in medicine right now are younger. They know how to support and guide children, young adults and middle-aged adults, but they can’t empathize with what it’s like to actually be older and go through a medical crisis.

Traudl: There are also problems with support from insurance. Medicare is good, but it only goes so far. For chemotherapy, Medicare only pays so much. I had to have Neulasta shots that produce white blood cells. Each shot was $5,000, of which I had to pay 33 percent. I had to get four shots. If you’re on a fixed income and not as fortunate as others, where do you come up with this money?

Renee: There is a great disparity between the ways treatment is offered to people of different ages. Under traditional insurance for younger people, the Neulasta shot would have been provided as a medical service in a medical setting provided by a medical professional. Under Medicare, the shot was not considered a Part B medical service, it was considered a part B medical drug. It was not provided under a medical setting nor was it going to be administered by a medical professional. Mother would have either had to inject the shot herself at home or find somebody to do it for her. I practiced on fruit and administered the shot to her. We wondered about the people who are older, more frail or weakened by the chemotherapy. What are they supposed to do?

Cancer is equal opportunity. When mother was going to chemotherapy sessions, chairs were all lined up and you form a kinship of sorts with the other people who are receiving treatment. It doesn’t matter if you are extraordinarily well-educated, what your cultural background is or your age. Cancer doesn’t care, but cancer affects the elderly the most.

Were there any difficulties you experienced during treatment because of your age?

Renee: At first, my mom was not given any help or information for choosing doctors and did not receive any support from the drug manufacturers. Mostly, we struggled with finding places accepting her insurance.

Additionally, my mom was turned down by a breast cancer center. We walked in after my mom was diagnosed asking for help, but they refused because she had the “wrong” insurance. We later found out she had the right insurance, but the people at the front desk were misinformed.

Traudl: We later found out there are nurse navigators, but I was never referred to one. I think all cancer doctors and surgeons should automatically refer people to a team of doctors and a nurse navigator.

Do you think older patients with cancer are appropriately represented in the media?

Renee: Statistically, it has been proven that cancer affects older people more than any other age group, but when you look for support and guidance for the elderly, there is little to none. On the other hand, for children, percentage-wise, cancer affects less than 1 percent, but the level of information and support available is much more vast. The information available in media and on the internet is inversely proportional to those who are affected. The elderly get cancer more often, but there’s the least amount of information out there for them, whereas for children and younger adults, there’s tons of information, tons of charity, tons of organizations and specialty hospitals. This disparity inspired us to create our nonprofit organization.

What is the mission of CORAL 65? What steps are you taking to help older patients with cancer?

Renee: Our mission is to instill a sense of comfort, optimism, restoration, abundance and longevity to women 65 and older affected by cancer.

We have a variety of steps that are in our relief and support programs. Our biggest program right now is bringing support groups to senior centers throughout local communities as part of our community outreach. We are going to the older people so they don’t have to find us or find transportation.

We also coordinate transportation with other nonprofit organizations, have an online presence with educational resources, do research and statistics to create awareness for how cancer is affecting the elderly, help people find housekeeping services if they feel they need it, have references to boutiques if someone should need a wig and offer limited financial assistance for medication or doctor visits.

What inspired you to created CORAL 65?

Renee: That would be my mom. There’s a saying, “My mother is the inspiration and I’m the perspiration.” My mom is the heart, soul and smiling face of CORAL 65 and I do the work. She was the inspiration because of the things she went through, including facing death twice due to cardiotoxicity from chemotherapy. It affected her heart greatly and forced her to go to the emergency room consistently three days after chemo. We couldn’t imagine somebody else who is unsupported or alone going through that.

There is very little information available regarding older people and cancer. I once sat at the computer for 15 hours doing research about people diagnosed with cancer who are over the age of 65 and on Medicare, but I found almost nothing. This and all of the unnecessary hurdles were what inspired us. Nobody should have to go through the same type of stress, research and effort that we did.

Traudl: I had the support of my daughter and the support of the community, but what about the people who don’t have that? I wanted to help those who are not as fortunate as I was because cancer is hard even when you do have support.