Posts tagged ‘cancer’
Jesica Harrington is a 5th grade teacher at Timber Trail Elementary School in Castle Rock, Colorado whose patient story was featured on the Johnson & Johnson (J&J) website and in their 2009 Annual Report. Jesica was diagnosed with breast cancer while pregnant with twins, lost one of the babies a month later, and “underwent a mastectomy before beginning four rounds of chemotherapy.” She searched for information online and found little on battling breast cancer while pregnant. Her father, who also searched, found out about a blood test that captures, identifies, and counts circulating tumor cells in patients with certain types of metastatic cancer, which Jesica asked her doctor to order. Jesica delivered a healthy baby boy, completed her cancer treatment, and is in remission. I contacted her because of my interest in patient stories, curious about how her story was featured by J&J and why she decided to tell her story in a very public way.
Lisa: You mentioned that being diagnosed with breast cancer when you were pregnant made it harder to find information. Did you find that the professionals treating were less prepared?
Jesica: Initially, the diagnosing doctor seemed insecure about diagnosing my cancer and in explaining how we would treat it. It was through our (mine and my husband’s) persistence that we went around the recommended procedure and sought out an oncologist directly to help us learn about what we would do with breast cancer and being pregnant with twins. My oncologist came highly recommended and had prior experience with women in my situation, so I felt I was in good hands.
Lisa: Did you search for information online about breast cancer and pregnancy, or did people recommend sites to you?
Jesica: I had friends send me all kinds of information, mostly success stories and current practices similar to what I was dealing with. I searched for answers as well, especially because I had so many questions. The problem was realizing there is a fine line between being/getting educated and just knowing too much.
Lisa: What did you find that was ultimately most helpful?
Jesica: Factual information about types of cancer, methods to treat, drugs and their side effects, and a couple of stories about local women, whom I talked with, who had been through breast cancer while pregnant.
Lisa: How did you learn about J&J’s test?
Jesica: My father was looking for methods to monitor how and if chemotherapy is working. He came across a local news story, which led us to a newly released test used at the University of Colorado Cancer Center (UCCC). He told me to take a look at the article, that it was something he thought I should do. I contacted a rep from the UCCC and inquired how I could take the test. I persuaded my oncologist to order the test and we went from there.
Lisa: Why did you decide to tell your story?
Jesica: People were interested in the information I had. I am a very private person, but also felt that this was something I had to share. I couldn’t keep it secret, when my own life affected so many around me (students, parents, coworkers, family, friends, neighbors, doctors, other women in my situation, media…) In the back of my mind, I hoped that my diagnosis and battle with breast cancer could and would be used for future references. After I had been diagnosed, all of my students and co-workers wanted to support me in my battle-they held a “carnival for the cure” from which all proceeds went to my family and me. Through this event, local papers and news media were contacted. My story initially appeared on a newscast and in a couple of newspapers.
Lisa: Would you have told others your story had your situation been more “typical”?
Jesica: Yes, but it wasn’t. I knew that there had to be more people like me out there searching for information and feeling helpless. Why not take what I’ve experienced and let others learn from it, both from a personal perspective and from a medical point of view.
Lisa: Can you tell me more about the process where J&J contacted, interviewed, and photographed you?
Jesica: Through a publication put out at UCCC, J&J contacted me about the CTC test. I was approached to educate people who are going through a similar experience and to get the word out about a test I found to be helpful during my treatment. I told J&J my story by phone and shared my CaringBridge page as well provided background about all I’d been through. A couple of people come out to interview me, take pictures, and shoot video, both at school while I was teaching and at home that evening. Everything was 100% accurate in both the article and video except they mentioned Boulder instead of Castle Rock in the video.
Lisa: How did you feel about including your students and your family?
Jesica: Fine; I thought it was for a good cause. Someone could learn from my story and experiences and could see what to expect if they happen to be in the same situation. I’d like to think I was a success story, which we all need to help us find motivation to fight a battle such as one with breast cancer.
Lisa: I was surprised J&J posted the two articles and videos at http://www.jnj.com/connect/caring/patient-stories/hope-against-cancer/ and http://www.investor.jnj.com/2009annualreport/medical-devices/hope.html without telling you – it seems like they should have let you know, do you agree?
Lisa: You mentioned that you did other interviews – what made you decide to?
Jesica: I felt strongly about letting others know about a blood test that was out there to help with tracking chemo throughout treatment. I knew the information wasn’t prevalent and I wanted to get it out there.
Lisa: Has it been helpful for your friends and family that you were open about the process you were going though?
Jesica: Yes, information is very powerful. I wanted my friends and family to know and understand what I was going through. People always feel helpless when others are struggling with a disease and going through treatment and they don’t always know how to help, but by being open about it, I think they felt more comfortable in being there for me instead of feeling sorry for me.
Lisa: Finally, does it help you to know that you are helping others? Does talking about it help you process your own emotions?
Jesica: Yes, to both. I’m a teacher – it’s in my blood. I’ve written journals all my life; it’s something that helps me be able to process what comes my way, to reflect and cope.
When you design a health Web site, the most important questions to ask are how and why someone will come to your site. To help my Online Consumer Health students answer these questions for the sites they design, they create personas and then develop scenarios that start with the persona’s trigger for going online and continue with the persona’s ongoing education and support needs.
Triggers can be related to the calendar, the news, an existing health problem, a concern about a potential health issue, or a new diagnosis or prescription. Triggers can occur because of the time of year: searches for “diet” spike on the first week of each new year and crash a week later. Bill Tancer reported on the frequency of health searches related to a diagnosis of a famous person in the news. The most common trigger is the need to learn more about one’s own or a loved one’s health issue. Susannah Fox said, “A medical crisis flips a switch in people.” With 52% of online health inquiries on behalf of someone else, a loved one’s medical crisis is often the trigger that leads to health searches.
Jill D. is a researcher from New Hampshire whose mother was diagnosed with a gastrointestinal tract tumor. Shocked and worried when she heard this, Jill wanted to immediately learn more. She needed to understand what the diagnosis meant for herself and to help her mother understand it; she also needed to help her mother evaluate treatment options. Jill doesn’t live near her mother so couldn’t go with her mother on her next doctor’s appointment. She would have felt comfortable asking her own doctor questions, but didn’t have an appointment otherwise scheduled. So she went online.
In June 2006, my (then) 74-year-old Mom was told that she had a gastrointestinal tract tumor that was probably cancerous. As soon as I heard, I wanted to find out what treatment options would likely be offered to my Mom as well as the statistical likelihood of survival.
I looked online for information because I’m not in my doctor’s office often enough to be able to ask my own physician, “Say, what do you know about tumors of the GI tract?” Also, I wanted to browse through written information at my own pace rather than trying to listen closely to a quick data dump.
I looked online over the course of several evenings. I know that the trustworthiness of information on any given website is highly dependent on the source of the information, so I concentrated on sites provided by highly reputable medical establishments such as the Mayo Clinic and the US National Institutes of Health.
By far the most useful information for my purposes was available at the National Cancer Institute. The reason I found it so helpful is because I was able to read the same article in two versions, one intended for patients and the other for medical providers. I am not a medical provider but I am used to reading dense, scientific journal articles. Thus I carefully went through a page entitled, “Gastrointestinal Carcinoid Tumors Treatment“.
I learned that these tumors tend to grow very slowly and, if the tumor is localized, the 5-year survival rate is 70 – 90%. My Mom was wondering if she would be subjected to radiation treatment but this article indicated that radiation is rarely helpful for these types of tumors so I told her that her oncologist would probably not prescribe radiation. Further, I found out that tumors smaller than 1 cm rarely spread to other areas (metastasize) but that tumors greater than 2 cm frequently metastasize; this told me that my Mom’s 1.6 cm tumor could go either way.
None of the information in the preceding paragraph was available on the page intended for patients, so I was grateful for the chance to read the pages intended for health professionals. I had to look up a few words, such as “telangeictasia” (the formal term for spider veins, one of the potential signs of GI carcinoid tumors). Despite my incomplete medical vocabulary, I felt reasonably confident that I understood the article and wouldn’t misrepresent the information when relaying it to my Mom.
This story has a happy ending because my Mom underwent surgery to successfully remove the tumor and—even better—the tumor was not at all cancerous. Six weeks after the operation my Mom was feeling healthier than she’d felt in years and went off on a long car trip.
Pam Ressler, RN, BSN, HN-BC, one of my students, and I are researching why people choose, or don’t choose, to start and maintain a blog about a health condition. We would appreciate your answers to these questions. We will publish the results of our study here as well. Please respond in a comment or email me.
If you have a blog:
When and why did you start your blog?
What do you see at the primary reason(s) you continue blogging?
How often do you typically post?
What types of feedback do you receive? How many comments do you typically get to each post?
Do you know how many unique visitors you have during a particular time period (say 2009)?
Do you do anything to promote your blog or attract new readers?
Do you use your real name in your blog?
Do you read other blogs by people with health issues and, if so, which and why?
Have you shown your blog to your doctor or other healthcare professional?
If you don’t blog:
Why didn’t you blog about your illness? Did you consider blogging about your illness?
What do you see as the primary reason(s) you didn’t blog about your illness?
If you have discussed your illness with individuals besides your healthcare team, how have you done so (phone, email, in-person support groups, discussion boards, etc.)?
Do you read other blogs by people with health issues and, if so, which and why?
If you know of someone who blogs about their health, please forward this to them or let us know how to contact the person.
Much like love and religion, health literacy is a topic that many people have a revelation about. It is not explicitly taught in school (unless you study Health Communication or a related topic); instead people have personal experiences that lead them to learn about health literacy and recognize its importance in all aspects of healthcare.
My health literacy revelation came while I was a patient advocate for a Cambodian refugee who had cancer. I won’t go into the details of his health condition; just that I took him and his wife to his doctor’s appointments. During the appointments, I encouraged him to talk about his symptoms and medication side effects and asked about test results and treatment options until I understood them. I always made sure the couple were following and checked to see if they had questions.
There are many aspects of patient advocacy I could expand upon, but what struck me the most was how the couple would ask me on the drive home and even weeks later to repeat what the doctor had said. This was information that I retained but they did not. As I started to read about this, I discovered that studies had been done on the emotional impact of disease and how comprehension and retention were impacted.
While language and culture may had been factors, I believe fear had a stronger impact on this couple’s health literacy skills. Now, when I teach, I include health literacy, especially for its role in the design and evaluation of health Web sites. When someone goes to a health Web site, poor health literacy skills can influence the search terms used, the Web sites selected, and how information is used.
Pam Ressler, RN, BSN, HN-BC, and I discussed how healthcare professionals, family, and friends use empathy vs. sympathy to respond to someone who is ill when I told her about my blog post. Pam had insights based on both professional and personal experiences. She told me about Empathy vs. Emotional Reasoning in Nursing, in Advance for Nurses, which Pam posted a blog entry about. The article defines empathy and emotional reasoning as:
Empathy is defined as the ability to understand another person’s circumstances, point of view, thoughts and feelings. When experiencing empathy, one should be able to understand someone else’s internal experiences.
Emotional reasoning is defined as ‘a cognitive error whereby a person who is nervous or anxious resorts to emotional reactions to determine a course of action.’
The article advises “empathy without communication is mind reading. Listen to patients; provide education, but don’t give advice.”
Pam also mentioned a study about doctors and empathic communication that “sheds light on the types of situations and remarks that physicians should recognize as opportunities to express understanding and support… empathic responses can be brief and do not make consultations longer.”
When I ran into Paul S. not knowing he had cancer, I barely recognized him and struggled with what to say. “What happened?” didn’t seem appropriate, although it was my initial reaction. I believe I said, “I barely recognized you,” which was true. I’ve been in many situations where I wasn’t sure what to say to someone who was ill or in distress; I wanted to be supportive but wasn’t sure what would be perceived as helpful.
I’ve been on the receiving end too; most recently when my father died and I remembering saying to myself many times, “I know he/she means well” when their words did not comfort me. I only once curtailed a conversation, when, within minutes after hearing about his death, a friend started telling me a long, involved story about a mutual friend’s father. I stopped her, said that I knew she meant to be supportive but I could not listen right now, and walked away.
People so often mean well but don’t know what to say. I asked Paul S. what he found helpful and he thought it was very dependent on personality. He describes himself as “a very logical, rational, controlled-emotions kind of person, so I hear comments such as you made as empathetic or at worst neutral. ‘Wow, Paul, you look like crap!’ ‘Darn right – I feel like crap.’ I actually like that. But I have known other people who are really bothered by exactly that type of observation. They want sympathy and understanding, but not observation, if you get my distinction. A worried LOOK, and an inquiry about how they are feeling, seems to be what they need. Which I value too. So I guess that’s the safe thing to do.”
When I told Paul about my experience with the friend who I walked away from, he understood my reaction and said, “What I did not want to hear is what you heard: somebody else’s story, not really relevant, and depressing. That’s indicative of a person who isn’t able to listen.” Of course, I was the one who was actually there and don’t think that the person couldn’t listen, but didn’t know what to say and felt moved to say something. The opportunities for mismatch between what one person says and the other person needs are abundant!
The difficulties are compounded by the distinction between advice and information, as Paul articulated, “The other thing I did not want to hear is advice about what I should do or not do – I’m getting the best care available, and I’m pretty competent to take care of myself. But then unsolicited advice is almost never welcome, right? What I DID appreciate, however, was INFORMATION. I didn’t include this in my story, but when I shared my situation with a friend at church, he reported that his mother had experienced something similar and had done extensive research on the web regarding Cisplatin and hearing loss. At my request, he contacted his mother who then e-mailed me several specific web links to good information sites. THAT interaction spurred me to do more research than I had done before.”
When I ran into Paul, my immediate thought was not to offer meals or rides, but sometimes this is the most helpful thing one can say. Paul agrees,”The other thing that was nice, though I didn’t really need it, was offers of help, such as rides to chemo or offers to bring food or visit. I think it’s my personal style to not want or need much of that – I was able to drive the whole time, and didn’t want to put somebody to a lot of trouble; my taste buds and my appetite were shot, plus my partner was taking care of my food needs; and I just wanted to be left alone to vegetate in front of the TV when I felt bad, and not feel like I needed to keep up a conversation or be nice. But I’ve known other people – my (now former) partner is one – who in a similar situation would want almost around-theclock company and help. So it’s good to ask and offer help, as long as you’re prepared to accept ‘thanks, but no thanks’.”
While Paul doesn’t think he is typical, it may be that no one really is in times of need. Which, of course, helps one to appreciate the people who do say or offer exactly what you need at that moment.
Paul also deal with the the common problem of how to keep people informed through email, which is a way of reaching out to people as well and a way of avoiding having the same conversation repeatedly. Paul recounted his experience, “On a closely related topic, something I did that had a surprising and wonderful result: When I entered the hospital, I did a broadcast e-mail to a ton of friends, advising them of the immediate situation and inviting them to opt in to periodic e-mail updates. More than 60 people opted in! Sending those broadcasts helped me feel connected, and I often got lots of replies. But the most surprising thing that kept happening was that they THANKED me for keeping them posted. That blew me away. It still does a year later. True friends WANT to know, want to share the burden. Too many people feel ashamed or embarrassed or unimportant, and they miss this incredible opportunity to strengthen relationships by sharing their situations. Sure, there are folks who complain too much, so it can go the wrong way. My messages were factual and hopeful, even when I felt like crap, and that seemed to inspire a lot of people, which in turn made me feel that something good was coming out of this not-so-good time. I don’t know whether this fits into what you’re trying to do, but I would sure encourage people who find themselves in similar situations to reach out and stay in touch.” There are Web sites for exactly this purpose, but email is certainly simple and, in this case, effective. There are also many people who blog their illness; one of the most moving that I read was NPR journalist Leroy Siever’s My Cancer.
I almost didn’t recognize Paul S. when I saw him with no hair looking rather gaunt. He told me about his cancer and about his experiences with treatment, which included side effects during chemotherapy of potentially permanent hearing loss and numbness in his hands and feet. Paul felt like he had to do his own research because he was not “getting satisfactory answers from my treatment provider”. Here is his story:
I was diagnosed with a germ cell tumor and endured nine weeks of chemotherapy. I was advised of the side effects of the three chemo drugs in a very routine way, emphasizing the nausea, but not dwelling on the other effects, and not really mentioning that some side effects could be permanent.
One of the three drugs was Cisplatin (cisplatinum), a complex compound that includes platinum. During the first round of chemo, I experienced a high-frequency hearing loss. While I could still function in terms of hearing and speaking to other people, I was very aware of the loss in listening to music and even the normal background of everyday sounds – sounds were not as crisp as they had been.
I consulted my oncologists, one of whom said that this was a known side effect of Cicplatin, and that most people recovered their hearing when the drug therapy ended. I asked what he meant by “most”. He replied, “About 70 percent.” Now 70 percent may be “most” to him, but it sure isn’t to me.
From the beginning of my illness, I had started broadcasting news of my illness and treatment via e-mail to interested friends – an opt-in list after the first broadcast. One of the friends replied to my news of hearing loss with research and experience that his mother had acquired in dealing with a similar issue. This spurred me to do some investigation of my own, and it wasn’t hard to find lots of information on Cisplatin with a simple Google search.
What I learned is that Cicplatinhas been used for chemotherapy treatment for several decades, that the hearing loss side effect has been well known for most of that time, and that somewhat extensive research has been done on the nature of the effect and on ways to protect the body from the side effect while still getting tumor-reducing effects from the drug. The drug continues to be used because it has proven highly effective in killing tumor cells with otherwise not-too-awful side effects.
The bottom line is that there is no known way to avoid the hearing loss while still getting the tumor-reducing effect. The hearing loss effect *is* dose-dependent. Armed with this information, I insisted what my oncologist reduce the dose of this drug, and after discussion of the tradoffs, we reduced the dose by 15% for the second and third cycles of chemotherapy.
My hearing recovered somewhat toward the end of the first cycle. Each cycle consisted of five days of Cisplatin and two other drugs, followed by two weeks of one-day-per-week of just one of the drugs (not Cisplatin). So I got Cicplatin for five days, then was off of it for two weeks – one cycle. The loss was somewhat less during the second cycle, but also less recovery, and similarly for the third cycle.
At this point I have what is considered to be a permanent high-frequency hearing loss, accompanied (as expected) by mild ringing (tinitus). It apparently is the price I must pay for being cured of my tumor. I am angry about the loss, but have no target for my anger.
Chemo ended in mid April. During treatment I went through a spell of peripheral neuropathy- numbness in my hands and feet, another known side effect of Cicplatin. The numbness lessened over time, and shortly after chemo ended, I had some residual numbness in my feet but none in my hands. However, in the last two weeks, the numbness has worsened in my feet and has returned to my hands. My oncologist is at a loss to explain why the neuropathy should suddenly worsen weeks after I stopped receiving the drug that supposedly caused it. So I will be continuing my own research since I am not (so far) getting satisfactory answers from my treatment provider.
That’s the story so far. My tumor has gotten substantially smaller, almost to the vanishing point (according to PET scans), but I am not yet officially in remission. The numbness is not painful, but is quite annoying, and it’s worrisome because it shouldn’t be getting worse now. (P.S., private correspondence, 7/31/08).
Paul S. is doing well. As an update he said:
My health is good now. As of the last CT scan in January, there was nothing left of the tumor but scar tissue. I have another scan a week from now as a precaution.
My hearing may have improved slightly – the tinnitus is less, and I don’t get the distortion with loud sounds that I was getting. As for frequency response, well, at my age, there is going to be some high-frequency loss anyway. I know there is still a reduction in high frequencies, but I can’t say for sure at this point whether it is age or chemo. (P.S., private correspondence, 7/6/09).
I told Paul I hope he wasn’t offended that I called him gaunt and he said, “I’m sure I did look ‘gaunt’ when you saw me then – I certainly FELT gaunt.” One so often struggles with what is the right thing to say or how to hide the surprise, or even shock, one feels when seeing someone who looks very different than the last time you saw him or her.