2 posts tagged “kidney cancer”

Meet Peggy from the PatientsLikeMe Team of Advisors

Posted February 10th, 2016 by

Say hello to Peggy, another member of your 2015-2016 PatientsLikeMe Team of Advisors. A survivor of both kidney cancer and Stage II breast cancer, Peggy believes that most of us are “ill-prepared to be ill,” and that better health education can lead to better outcomes.

After years of teaching and volunteering, patient advocacy has come naturally to Peggy. She’s determined to teach others about their treatment options, and writes a blog covering new studies. Her goal is to empower patients to approach their doctors with more confidence.

Here, Peggy touches on how she overcame survivor’s guilt and the challenges of navigating the healthcare system.

What gives you the greatest joy and puts a smile on your face?

In front of me is a bulletin board of picture, heavily featuring my two young grandchildren and a few of my own five children. The sheer joy of seeing my family grow up is in sharp contrast to the realization I could have missed it all, had I not had excellent care of my kidney cancer. In gratitude for what had been given me, and in appreciation for the sacrifices others had made, I am determined to teach others about their kidney cancer and their treatment options. I was horrified to realize that many patients were not only late in being diagnosed, but also receive substandard care. This is generally due to lack of knowledge and I knew that I could educate patients to pursue the best care. This new role as patient advocate seemed to be a natural extension of my life’s work as teacher, mother and community volunteer. I can only hope that other patients can continue to be a part of their own families, thanks to the work that I do.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My condition is now that I am a healthy person. Except for scars and CTs, no one would think I had been ill. That permits me to examine challenges that patients face as they come to deal with their illnesses, and how our society’s expectations and the convoluted health system limit patient outcomes. For example, people rarely learn how to be effective patients, and are ill-prepared to be ill! They have been taught to be passive in healthcare settings, have not learned how to assess the information given them, and have no experience in navigating a complex health system. Further, they are asked to trust in doctors who do not communicate well, assess conflicting information, and of late, encouraged to be “their own best advocates,” but without any training to do so. Of course, this is usually done at the time in which the patient is most vulnerable!

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

My kidney cancer and my “long-term remission” is an example of what is happening in cancer care and research today. It is a story of great advances in research, hampered by a grim history with its negative expectations, and the time constraints in modern medicine. Though the tools we have at present can reveal the cancer at an earlier stage, or offer more ways to destroy the tumors, we have a very uneven usage of those tools. Rarely is care integrated, with medications sequenced with surgery or radiographic ablation. The typical diagnosis is inadequate, yet that drives treatment into a guessing game, with dire outcomes all too likely. Again, this does not have to be, as simply providing treatment that reflects the recognized guidelines would improve outcomes. Those guidelines can provide basic care, but using all the information now available, and doing so in a timely manner, could change kidney cancer statistics dramatically.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

I would recommend that the patient first understand as much about his own general health condition as possible, recognizing any special challenges. What the patient brings to that party is as important as the diagnosis in treating the disease. Next would be to learn as much about the new condition, and assess whether the diagnosis is complete, or indeed, correct. There are many conditions which are described in “typical” terms, and to understand where the patient fits or does not fit is valuable information, most likely to come when the patient understands the disease and his own situation.

Next would be to learn to say, “I am the kind of patient who wants to learn everything about my disease and how to deal with it. I will probably ask you many questions and hope you can guide me. I will want copies of my tests, any reports and your assessment of me. How do we make this work?”

How important has it been to you to find other people with your condition who understand what you’re going through?

I had a unique situation in that I was essentially cured of my “incurable” Stage IV cancer. There was a time I felt guilty to talk about my successful treatment, feeling that it would be more hurtful for other patients who were not getting the kind of response that I had. I hesitated to offer advice and to share my knowledge, until someone explained that I had “survivor’s guilt.” That feeling had a name, but no initial direction. I knew I had to share the valuable information I could gather. My old schoolteacher/mothering instincts finally made me realize that I could provide a good example for others, and help guide them through the swamps they were in. That role as a “good example” suited me, and made it far easier to give not only information, but advice in a similar role.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

When I was newly diagnosed with breast cancer, which was my second cancer, I felt quite capable of dealing with the treatments to come. Then I met my new oncologist! Recommended through my Medicare Advantage group, I was surprised when his online bio did not mention anything about his skill in treating breast cancer. He noted that his area of specialist interest was in prostate and blood cancers, which did not fit my needs.

Nevertheless, I went to the first appointment. The biopsy report was in my purse, but wanted to hear his interpretation. That report clarified my type of breast cancer, the size of the tumors and location, all of which have a tremendous bearing on treatment. But first I asked about taking certain bone-strengthening agents in the presence of breast cancer, recommended in recent research. “Don’t even worry about such things. You won’t need it,” he said, this despite the existing guidelines. Moreover, he did not even discuss the pathology report, but recommended I see a certain surgeon, saying, “Go get your breast removed and come back to me, and then I will take care of you.”

More stunning than this statement was to learn that the surgeon was especially skilled in abdominal and vascular surgery. Closer to the breast than the prostate, I thought but still not close enough! He did not sound like the type of doctor who could do the best breast surgery on me, nor would he have the expertise to determine the level of surgery—lumpectomy, mastectomy or reconstruction.

The HMO had no particular experts in breast cancer, as “they all can do it,” as an explanation. I quickly shifted back to Medicare, and sought the expertise of a surgeon from a breast center in an academic center. My first appointment was thorough, the pathology discussed at length, as was the size and location of the tumors, which required a complete mastectomy. I understood that I was not a candidate for a lumpectomy, but was offered immediate reconstruction and to anticipate taking hormone inhibitors for the coming years.

In a short time, I had the necessary mastectomy and reconstruction, was set up with a physical therapist, and was comfortable enough to travel overseas just two weeks after surgery. I just don’t think that the prostate guy and the abdominal surgeon would have made that possible!

What makes you a valuable member of PatientsLikeMe when you are not dealing with the daily impact of either of your cancers?

I have asked myself what value I might bring to PatientsLikeMe, and to other patient-to-patient forums for several years. As I had discussed earlier, this role may be unique inside PatientsLikeMe, as most patients are dealing actively with treatment. My profile of how I feel is pretty boring, as I am happy and healthy 99% of the time. But my example might also be of value to other patients who confront serious diseases and find relief from the disease itself, yet never from the anxiety and impact of that illness. I might also be an example of more patients to come, who successfully conquer a cancer — for some time — only to have it return years later, or another take its place.

As cancer and other illnesses are becoming more like chronic illnesses than swift and savage killers, the affected patients and their families are changed forever. Never again will an odd bump or lingering cough pass unnoticed, nor will the fear that the cancer, in its drive to survive, will emerge again.

In addition, many of us are here because we did not get a good diagnosis early in the course of the disease, which may have cost us years of health or even a cure. Much of that should be attributed to the tenacity of diseases or our own cells missing a step at an inopportune time. However, a system which helps the patient work to get a diagnosis earlier, and one which teaches him how to engage his doctor in better care is possible, and the most effective way to benefit all of us.

Thus, my emphasis in PatientsLikeMe will continue to be an example of how one must learn to be engaged with one’s own health, knowing that this will vary from patient to patient, and from event to event. Engagement is a dynamic process, but is empowering, which alone can have a healing effect on the patient. I would hope other patients would recognize the value of their input into the research questions, that they support clinical trials, and work to create partnerships with all their healthcare providers.

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PatientsLikeMe launches “24 Days of Giving” to encourage sharing of health data for good

Posted November 16th, 2014 by

Napkin Notes Dad Garth Callaghan Joins Campaign Calling on People
to Donate Health Data Starting on Giving Tuesday

CAMBRIDGE, Mass. (November 17, 2014) – On December 2, PatientsLikeMe will launch a new campaign that will extend through the month and ask people to rethink their giving this year. PatientsLikeMe is calling on patients who are living with a chronic condition to donate their health data after donating to their favorite non-profit on Giving Tuesday.

The December campaign, officially branded “24 Days of Giving,” asks patients to simply share their health data for good. To do so, they can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. By sharing this data on the site, patients not only help themselves, but help others who can learn from their experiences, and advance research. “Our members have learned how to live better day-to-day and have contributed significantly to medical research,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy. “We hope more will consider sharing their health data for their own, and the greater, good.”

At PatientsLikeMe, health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. The data are de-identified and shared with partners to help bring the patient voice to medical research, develop better clinical trials, and create new products and services that are more in tune with what patients experience and need.

Garth Callaghan, kidney cancer fighter and author of Napkin Notes, understands the importance of data for good in furthering clinical research and is an active PatientsLikeMe member. Garth has been diagnosed with cancer four times and may not live long enough to watch his daughter Emma graduate from high school. Rather than dwell on his diagnosis, Garth takes each day as a gift and a chance to connect with those he loves. He has fulfilled a promise he made to write 826 napkin notes so that Emma will have one for every day until she graduates high school. Garth uses PatientsLikeMe to share his data in the hope that others living with cancer can learn from his experience and help fight their own battles better.

“I keep my promise to Emma by sharing wisdom through my napkin notes, and I share my cancer stories online through PatientsLikeMe,” said Garth. “When I donate my data to an organization that can aggregate it and see a pattern or meaning, I’m not just helping myself, I’m helping all of the other people who are living with cancer, and their doctors.”

The “24 Days of Giving” campaign will be active across PatientsLikeMe’s Twitter and Facebook social media channels through December (#24DaysofGiving). Anyone can join PatientsLikeMe and share their experiences to help others while helping themselves. To learn more, go to www.patientslikeme.com.

About PatientsLikeMe
PatientsLikeMe® is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 300,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Margot Carlson Delogne
(781) 492-1039

Rachel St. Martin
(646) 221-6933