Pancreatic Cancer Treatment Needs to Focus on Patients

Patient advocate Anne Glauber explains how focusing on a patient’s unique needs and leveraging science can improve treatment for rare diseases

Anne Glabuer and her family

When patients are diagnosed with pancreatic cancer, doctors often tell them there are limited treatment options and to prepare for the worst. For pancreatic cancer patient and advocate Anne Glauber, though, a patient-first approach to treatment is helping her beat the odds. Glauber explains why patients need to make their voices heard during treatment.

When did you learn that you had pancreatic cancer? How has it affected your life?

I was diagnosed with stage IV pancreatic cancer in May 2014, and, to put it mildly, it has completely transformed my life. I had no signs or symptoms at all until a week before my diagnosis when I got jaundice and was feeling tired. I thought it was just because of my busy schedule; I was working as a managing partner at the public relations firm Finn Partners, co-founded NO MORE, had just published a book and was busy with pro bono projects as well. My diagnosis was shocking and devastating. My entire life halted.

How important was it to know that you were not alone at that time?

I couldn’t have gotten through that shock without the support of my family, my children Lili and David, my partner Dave, and my close friends. They all helped me research where I should go for treatment and who the best pancreatic cancer specialists in the country were.

Anne Glabuer

Anne Glauber was diagnosed with stage IV pancreatic cancer in 2014 and since then has advocated for a patient-first approach to pancreatic cancer treatment. Source: Anne Glauber

How limited were your treatment options?

When I was diagnosed, the doctor told me there were 2 treatment options—both had side effects but could possibly give me a couple of extra months to live. I went to the top cancer institutes in the country and heard the same things—they were offering me standard-of-care treatments. A friend recommended that I meet a doctor in Los Angeles, so my family and I packed our bags. Our planned 3-day trip turned into a month-long stay after speaking with him about his treatment approach. He is creative and innovative in treating pancreatic cancer. I was introduced to another doctor at New York Presbyterian, who is now handling my day-to-day care and is also very innovative and shapes treatments that are personalized to my tumor. They introduced me to scientists involved with cutting-edge research.

How has that research informed your treatment?

It’s made it more personalized. We’ve incorporated approaches to make the cancer more susceptible to treatment, including investigative research in circulating tumor cell analysis. I also have an organoid, which are my tumor cells living in a lab dish. These cells can be tested with thousands of different possible treatments to see what can be effective for my pancreatic cancer. My organoid was created by scientists led by a researcher at the Lustgarten Foundation’s Pancreatic Cancer Research Lab at Cold Spring Harbor Laboratories.

Why is it important for patients to make sure their voices are heard? 

I think pancreatic cancer patients need to be informed about their treatment and to advocate for science-driven care that can be personalized to their unique tumor and cancer. Patients and families need to be educated about science-driven options beyond the standard of care so they can ensure that they are getting the best treatment possible for them.

Because I’ve personally seen what the science can do, I became a board member of the Lustgarten Foundation, the largest private funder of pancreatic cancer research. I am also working on launching an interactive website called “Let’s Win” that will help pancreatic cancer patients share information about treatment with each other and learn about new science advances and clinical trials. Let’s Win will be launched in May.

What should we as a society be focusing on with regard to pancreatic cancer? There’s no cure for pancreatic cancer, and I don’t know if we’re anywhere close to a cure. We need to get more resources to explore personalized medicine further. We need to make genomic analysis easier to access and have better insurance coverage for it. While some things like organoids and circulating tumor cell analysis remain investigational, we need to make sure insurance keeps pace with the science. Personalizing treatment is really, really critical for pancreatic cancer patients.

What would you like people to know about pancreatic cancer on Rare Disease Day?

We need more resources dedicated to pancreatic cancer research. We need to get more funding for scientists who are making great strides in detecting and treating this disease. Pancreatic cancer is underfunded, especially given the relatively high mortality rates. We must have more funding for research into this disease.

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Support

Connect with other people whose lives are also affected by pancreatic cancer. Share personal stories, get information, and find support.

 

Stories

Patients can read stories from real people whose lives have been affected by pancreatic cancer. They can also share their own story.

 

Setting Goals and Creating a Treatment Plan

Setting goals is a 2-way discussion that patients should have with your healthcare team. Patients can follow these tips to help them set their treatment goals.