Editor's Note: The following post is by Nicole Sheetz, who is part of Lilly's Clinical Design, Delivery and Analytics team, with nearly 20 years' experience in the pharmaceutical industry across a broad range of roles. She is, first, sister, mother, wife and daughter, and, second, clinical trial advocate and innovator.
Part 1- My Sister has Cancer. Now What?
The Dreaded Word: Cancer.
On Friday, May 23, 2014, I went to work, knocked off a little early to hang out with my 6 and 8-year-old, and made a simple dinner for my husband and me. After cleaning up and preparing for a busy Saturday of soccer and dance rehearsal, I sat down on the couch to sip wine and catch up on email. That’s when I read this email from my sister—my ONLY sibling and my BEST friend:
Last year this time - Perfectly normal mammogram.
Month ago-Felt a lump in my left breast during self-breast exam.
Two weeks ago-Scheduled my yearly physical and gynecological exam.
One week ago-Regular mammogram AND ultrasound of left breast lump. Questionable looking from ultrasound.
Today at 11:45-Biopsy of lump and discovery of more lumps in lymph nodes.
Today at 2:30-Call from doctor with results from pathologist. Definitely cancerous cells and concern of the rapidity of the growth of the tumor and its size (2 and 1/2-3 cm) in such a short period.
Will know by 5:00 today if I have an appointment with Medical Oncology group on Tuesday to discuss chemo then surgery or straight to surgery then chemo.
Doctor would like to get an opinion on whether I should get chemotherapy to reduce size before surgery. Not sure about anything further than this information. He says prognosis is good.
(Note: She sent this via email because she had both a 9 and 2-year-old, and she was not ready for them to know the situation by overhearing a phone conversation.)
Sisters
We are not old. My sister was 41 when diagnosed and I was 37. We also have 765 miles between us—12 hours by car. She is a 5th grade teacher 20 years into her career, and I am a pharmacist working in clinical research at Lilly. I guess you could say that we are both trying to make this world a better place, whether through education or medicine.
I’m the baby and I owned that position in our little family unit. I was a whiney, needy child that craved attention and approval from my parents and my sister. Carrie was good to me, but she was also the only one that gave me the tough love that I needed to make it emotionally in college and eventually in the real world. She has guided me, provided advice, watched me fail and been the first to pick me back up more times than I care to share. Sadly, I can’t say that I’ve been that same person for her.
The Diagnosis
Cancer. I was stunned. Unable to speak. I sat on my couch, felt the room close in on me, and I sobbed. I mean sobbed. Carrie is the rock in our family. She’s the coordinator of family events, the “director” of covered dish dinners, and the master of calendaring and making lists. Her life is completely within her control. Until now.
The diagnosis? Stage IIIA triple negative breast cancer. I could go on and describe the blow-by-blow weeks and months that ensued, but most of you probably know the general drill—chemo, surgery, radiation.
After I got over the shock that Friday night and realized that she was not dead, I made a deal with my soul to drop everything to be there for Carrie. My husband was right there behind me, cheering me to do what I thought was best. I’m certain he knew that it was going to be hard on him but realized my sister (and I) needed this.
Helping From Afar
It’s Breast Cancer Awareness Month and I finally feel like I can openly talk about a few things that my sister experienced and what it was like to try to be an empathetic caregiver from afar. I’ll be sharing at least two more blogs that are near and dear to my personal and professional life.
Part 2- Long Distance Cancer Support
A sister is your built in best friend at birth. She’s the one you call.
In Part 1 in this series, titled “My Sister has Cancer. Now What?,” my sister and advisor in all-things-life was staring down Mt. Everest and she’d never really been hiking. She was forty-one years old, a mother of 2 boys, a wife to a hard-working man, and a woman with Stage IIIA triple negative breast cancer. It was my turn to use my healthcare background and the resources around me to guide her and offer support as she navigated the intensely difficult and tangled web of cancer treatment in our healthcare system today.
Adjusting to the New Normal
My sister, a 5th grade teacher, finished the school year with her class in June without revealing her diagnosis. She needed to live into it and was not ready for those looks of pity from fellow teachers, parents, and especially not students. She was also protecting her son, an outgoing 3rd grader at the same school, from those awkward moments where fellow students and their parents just don’t have the right words to say. I packed up my kids to go to Carrie’s for the summer. Thanks to a supportive boss, I was able to reduce my work schedule to 60% and shift work responsibilities to other incredibly understanding co-workers. I wasn’t really sure what I was going to do, and I wasn’t really sure she wanted me there. But something told me to go–that it was somehow the right thing to do. We pulled out of Indy leaving Daddy behind and arrived to find my sister–emotionally fragile, scared to death, but keeping a brave and busy face on at all times.
Being Together
I realized in the first 5 minutes of arriving that this–putting on an “I’m in control” face–was going to be the hardest part of Carrie’s journey. Knowing this was a turning point in how I consciously chose to work with Carrie over the course of our 9 weeks together. You see, that’s how we do it in our family. We don’t talk about it. We don’t wallow in our own misery. No pity parties here. We put on our big girl pants and we get busy. I had 9 weeks to build a base through her very strong local family and friend network, and I needed to be able to stay connected to provide long-distance caregiving. There was no time for leisure, no days of pretending cancer wasn’t in the room with us. It took us about a week to settle into an openness and a rhythm that only people that know one another can really do. It’s amazing to me that we have not lived together since college (20 years ago, GULP!), but I still know how she takes her coffee…how she likes her towels folded…how she hates a dirty baseboard.
Starting Cancer Treatment
Chemo was to start right away, but first she needed surgery for her chemo port. Port placement was not perfect and it eventually required antibiotics to resolve infection at the port. The port caused much pain and swelling, plus it was very hard for Carrie to pick up and hold her baby boy (2 years old) without causing trauma to the port area. None of us were anticipating port issues, but I guess we all live, learn and grown through these situations. On that first day of chemo treatment, Carrie looked like any non-sick person…a little tan, bright-eyed, full head of hair. She leaned over to me and said in her most sarcastic voice, “I guess everyone knows who the newbie is today!” and then she and I both snorted with laughter. Her treatments continued every week when her blood counts would allow them, and by August, she began to morph into the person with cancer that can no longer control her world. By this time, the support network was in full swing. The family was at-the-ready and grandparents really do know when to jump in and shine. T-shirts were printed and distributed: C3 (Cure Carrie’s Cancer). In true Southern style, she had lots of meal help, organized by Carrie’s dearest local friend. Childcare and carpooling were worked out for the remainder of August and into the school year. House-cleanings were booked at regular intervals.
Finding the Right Technology Tools
The well among us do things every day without appreciating how hard they might be if we were sick: child care, pet care, transportation (think soccer mom), grocery shopping, hair appointments, volunteer obligations, social commitments, yard work, house cleaning, and more. The list goes on and on even before the addition of healthcare-related items like doctor visits, treatments, blood draws, prescription filling/refilling, surgeries, and physical therapy. Thankfully, we had technology tools that enabled a connection reaching further and faster than would have been possible just a few years ago. Carrie and I are not techy, but we are also not afraid of technology. Log-in names and passwords don’t bother us. We sat down and took full advantage of several free tools. Social connection was important to Carrie, but Facebook, Twitter, and Instagram were not what she wanted. In fact, she requested that no one discuss her condition on any of these platforms, and we all respected that request. Truth be told, it’s exhausting to respond to everyone’s concerns and awkward to discuss in the midst of back-to-school pics and images of fabulous lunch plates from mild acquaintances.
Using Technology to Coordinate and Connect
Carrie needed a safer place to share her journey and so she chose CaringBridge. It was and is a good tool, and she was able to keep us informed and laughing with her along her journey. CaringBridge also gave people following Carrie an opportunity to donate to cancer research, something Carrie was proud to promote. Carrie’s healthcare network also had a good patient portal. Once signed-up, she could direct message clinical staff, see appointments on a calendar, view medication history, monitor laboratory readings, and review what was planned for her next treatment cycle. The portal allowed Carrie to grant me access to her records, which helped bring data and pragmatism to our otherwise emotion-filled discussion of why she had to skip a cycle. I could also ask the clinical staff questions. The 3-way virtual conversation between me, my sister, and the nurse or oncologist was invaluable in understanding why decisions were being made. One last online tool that was used was Meal Train, an online calendaring system where interested givers can sign up to bring a meal. Carrie and her entire family really appreciated this tool. It allowed them to see what days meals were coming, what the meal maker chose to prepare, and what time the meal was going to arrive.
Health Technology Continues to Improve
These tools were invaluable for what they individually offered, but I kept wondering how much nicer it would have been if they talked to one another, had a single sign-on, were mobile-friendly, and had the same look and feel. Luckily, there are many people out there that are not satisfied with the status quo. I’m one of those people that always expects more, so I’ve been watching new technology that is aimed at making the patient-caregiver-supporter network easier to manage.
What if there was a platform that integrated each patient’s needs, allowed access to health care data and easy access to providers, supported caregivers, invited other supporters into the mix, and took advantage of local resources? What if clinical research could be inserted into this holistic view when applicable and not a disparate, scary add-on to an already hectic and overwhelming system?
New technologies are trying to address aspects of the above, plus other things like mental health for people with illnesses and their caregivers. A few that impress me are:
- Wellist is on a mission to “make life easier for patients and their families.” They offer online personalized services AND a gift registry that they call Wellistry. Clever, right? They are trying to bring together hospitals, service providers, friends and families to support patients in times of need. I was very impressed with this solution, but I want it to expand beyond those lucky folks within the 857 area code.
- What Friends Do is an easy-to-use website designed to help family and friends form a "team" and respond in an organized, helpful way. It includes a calendar that filters and color codes by various tasks that a support network may be helping to complete (e.g. meals, transportation, yard work).
- CanSurround is focused on those affected by cancer. It is beautifully designed and tries to integrate critical components of disease state management. They offer checklists and trackers, journaling, a circle of support for caregivers, and other mind-body tools to enable users to reduce stress and connect their minds with their bodies.
What’s Next?
Each of these newer tools takes a step towards something better. However, none offer full integration with healthcare providers and patient-specific information. Plus, global scalability remains a challenge. If my sister were faced with starting a virtual support network today, something like these newer websites would be helpful, but not the panacea we are hoping to obtain. Innovation requires us to ask hard questions and tackle hard problems. We must try to do better and to not shy away from the challenge of bringing together health care, research, and the daily life of individuals. They are not separate things. We can no longer ignore the need for their integration. Our lives, and the lives of our sisters, brothers, mothers, fathers, children, and friends, depend on seeing the full picture of daily life and well-being in one view.
The Treatment Journey
Carrie’s oncologist said this cancer was not going to win and that the goal for treatment was a complete response. This meant that treatment was going to be a relentless journey towards being cancer free. There is really no other way to describe it.
She completed 5 long months of chemotherapy, including the ups and downs that come with 4 different chemotherapeutic agents, followed by surgery—both lumpectomy and lymphadenectomy. Ringing the bell and coming out of surgery with clean borders and virtually no cancer cells in the removed nodes was a moment to celebrate after what had already been a harrowing journey.
She was preparing to face the last leg of her treatment course (radiation), which she felt was clearly mapped with a defined end date. But to her surprise, her surgeon presented her with an alternative: he recommended that she consider a clinical trial.
Gathering Information; Making a Decision
My sister is an educator and fierce advocate for literacy. I work to advance clinical trials, with a focus on making them better for patients. And so she called me, eager to discuss this new opportunity.
My first question was, what is the clinical trial testing? She did not know the name of the trial, but she was told it was funded by the National Institute of Health (NIH). This didn’t mean much to her, but it gave me enough information to try to find out trial details for her.
While we were on the phone together, I opened my laptop and quickly went to clinicaltrials.gov to search for an open trial, funded by NIH, with radiation as an intervention, narrowed to adults 18-65 years of age, and geo-located to United States-North Carolina. I thought this would narrow the results to something manageable, but it returned over 70 hits. Wow—really? Seventy trials with those criteria all hoping to recruit patients at the same time? I could almost see my sister’s eyes bulging as she tried to understand the volume and the demand for sick people to volunteer to advance research.
That was too many trials for us to sift through, so I asked Carrie to obtain an electronic copy of the informed consent, which would provide a trial title or trial identifier and would include answers to other important questions. As I mentioned in an earlier blog post, Carrie’s health care system has an excellent patient portal, so she received the informed consent document within 24 hours. We read through it and understood that it would randomize her to standard of care radiation (which included both irradiation to the breast affected by cancer and irradiation of the lymph nodes on that same side) or experimental radiation (irradiation to the affected breast only).
She understood what randomization meant, but she was concerned immediately that she might get ‘less’ radiation if she were randomized to breast-only radiation. She asked me, “If I don’t randomize to the standard of care treatment arm, can I leave the trial?” Great question! I did my best to answer by letting her know that she could choose to leave the trial at any time; however, if she was not comfortable with being randomized to breast-only radiation, she may need to consider not enrolling in the trial. Data in clinical trials is precious, and we discussed that if she chose to enroll, then she should also intend to complete the trial.
There were many other questions:
- Why would they create a trial like this—one that is testing standard of care with something “less”?
- Who pays for clinical trial treatment? Will my insurance still cover treatment and will I have a co-pay?
- The trial’s main physician is different than my physician, my oncologist, and my surgeon—how will they all stay informed? Will my data and information still be available to me in my patient portal?
Seeking Answers
Using online sources, I started by making sure that Carrie knew the basics around clinical research and what might be involved in trial participation. Luckily, I could point her to a couple of blogs published through LillyPad and to explanations of key concepts described in the education center by The Center for Information and Study on Clinical Research Participation (CISCRP).These were helpful, but were not specific enough for Carrie’s circumstances to answer all her questions.
We also asked for a second opinion, an objective voice, if you will. Two members of the family happen to be physicians with deep understanding of oncology treatment options and clinical trials. With their input, she was closer to making her decision but still needed a few final questions answered.
Since Carrie already knew that her surgeon and her oncologist were supportive of the clinical trial, it was time for her to meet with the clinical trial’s primary investigator. So, she made an appointment to discuss the trial and arrived armed with her questions. Did I mention that she is very diligent in writing things down and making sure her questions get answered? Here’s how things played out.
- First the good: The investigator was thorough and did a terrific job answering her questions including her most difficult ones regarding the potential risks. They also covered the importance of the participants in each arm of the trial and staying in the trial until its completion, even through the long 5-year observational period. She felt informed.
- Now the not-so-good: She had to drive across Wilmington to the research center. She had to wait longer than usual since the investigator was fitting her into his schedule for a non-billable appointment. When she left, the front-desk receptionist tried to charge her a co-pay for the “visit.” And she realized that she would not have access to her data easily accessible in her handy patient portal. For that matter, neither would her regular oncologist, surgeon, gynecologist or general practitioner.
Her Decision
She decided against participation. The deciding factors included:
Acceptance of the risks associated with standard of care irradiation. She was willing to accept the consequences and wanted irradiation to both the affected breast and lymph nodes. Lack of convenience for participation in the clinical trial. Since the trial site was across town and the observational follow-up still required in-person visits, the time commitment was going to significantly affect her ability to return to work as a teacher and the life of her busy family. Diminished access to her data. For her own knowledge and for the rest of her health care team, data access was imperative and she found it difficult to understand why this was such a hard thing to share. Making a decision to join a clinical trial is personal and requires you to seek answers and to make the best decision for you.
Her Experience
Carrie underwent standard-of-care radiation, and we are very happy to report that she had a complete response, just as her oncologist predicted way back when he created her treatment map. She still believes in clinical research and in the benefits of clinical trials when they fit the needs of the individual. When asked if she would consider a different trial under different circumstances, her response was overwhelmingly positive: “Yes, I would consider a clinical trial again if it became a possible treatment option for me or to benefit those who come after me.”
Making Things Better
We can’t control who is going to get cancer. We can’t predict which tumors are going to have full responses and which are not. But we can make strides to make the experience of clinical trials better for patients through things like:
- Accessibility to the trial site
- Choices in location for some visits
- Access to data
We can work on these not-so-good aspects of clinical trials and together, we can make the experience better and more appealing for those contemplating the next step in their treatment journey.
We want to hear from you. Share your own experiences or thoughts about breast cancer, technology’s place in supporting patients and caregivers, and some of the factors that people consider before clinical trial participation. You can share on Twitter. It’s nice to know that support, common experiences, and passion to make things better are out there.