Launching communities with Inspire: The Pancreatic Neuroendocrine Tumor (PNET) Support Community
For patients and caregivers facing rare cancers, finding others going through the same experience is challenging. Yet, communicating with others who have “been there” is essential support. This can be especially true when statistics and online information about rare disease – out of context -can be frightening.
In 2011 Inspire’s moderation team found over 2900 mentions of carcinoid and over 200 mentions of neuroendocrine tumor in posts across all the cancer communities of Inspire. Patients, caregivers, and others affected by pancreatic neuroendocrine tumors (PNETs) were asking questions and searching for others with similar diagnoses. Here is an example:
“My sister was diagnosed with neuroendocrine Pancreatic Cancer two weeks ago (the Islet cell tumor type). Several doctors said it was inoperable since it had wrapped itself around a main artery and vessels. They advised chemo to try to shrink it. Just before Chemo was to begin, they informed her this rare type of cancer doesn’t respond to chemo so that was no longer an option. It was almost a ‘go home and wait to die’ sentence for her.”
PNETs, or islet cell tumors, are rare – they are diagnosed in about 1000 people in the US each year and account for between 3-5% of all pancreatic cancers.1
PNETs can be benign or malignant. PNETs are usually slow growing but their rate of growth can change and some grow aggressively. Functional PNETs produce biologically active hormones and symptoms of these include hyperglycemia, hypoglycemia, ulcers and diarrhea. The main symptoms of non-functional PNETs are pain, weight loss and jaundice. Both types are difficult to diagnose with diagnosis occurring between 5 to 10 years after the tumor first develops.2
For tumors that are limited and contained, treatment with surgery results in a 5-year survival rate is around 55%. For tumors that cannot be surgically removed, the 5-year survival rate is about 15%. Overall, the 5-year survival rate is 42%.2
Making a difference
In 2012, Inspire began an effort to find support for members with PNET. A life science company, with interest in learning from patients and caregivers about their experiences with PNET, sponsored the Pancreatic Neuroendocrine Tumor (PNET) support and discussion community. Additionally the community launched in partnership with these non-profits: Neuroendocrine Cancer Awareness Network, The Carcinoid Cancer Foundation, the Neuroendocrine Tumor Research Foundation, the North American Neuroendocrine Tumor Society and the Pancreatic Cancer Action Network.
The community has grown significantly since its start in 2012. Members tend to be informed and share their knowledge with those who are newly diagnosed.
For example, the caregiver of a new diagnosed patient asked:
“My husband is 2_ and was diagnosed last month with pancreatic neuroendocrine tumor (likely gastrinoma) that has metastasized to the liver.
This cancer seems so rare, that we don’t really feel like we have a leg up in terms of understanding this cancer despite being in the healthcare field. After reading many of your posts, I realize that many of you know much more about this disease process than either of us, and we could really use your advice about his treatment plan thus far.
[His]oncologist [has]… a special interest in neuroendocrine cancers has been treating people for over 30 years. We saw him a few weeks ago, and he recommended that he start S______ injections monthly, recheck him in 4 months with a repeat CT, and if stable, continue this indefinitely. Once that option no longer works for my husband, we would talk about other options… Is my husband doing the right thing by starting with S______? He is young and we want to be as aggressive as possible while maintaining his quality of life.”
She got 38 replies. One person recommended:
“there is so much hope with our disease, this wretched rare cancer. First and foremost GET YOUR HUSBAND TO A NEUROENDOCRINE TUMOR SPECIALIST. This is so important to take the right steps immediately with a professional who specializes in this disease. Lots of oncologists will tell you they can treat him but you really need to find a NET specialist to get proper treatment.”
Others mentioned medications:
“You did not mention C______ in your post, however, which was surprising to me. Did you talk about C______ with your doctor? If not, I would suggest your reading up about it, including the research papers published in the medical journals (which are fairly comprehensible to laypersons despite the technical jargon) and then discussing this option with your husband’s doctor.”
Still others advised getting a second opinion:
“The thing I always tell people is that you should feel in sync with your docs. If this onc is being conservative and you feel you want to be more aggressive, then seek other opinions. I’ve been aggressive with getting opinions, from the tops guys, who each have given me differing opinions…This alone has made me feel better because I’m able to see the situation through several pairs of experienced eyes. At the time of diagnosis I was working at a teaching hospital/medical university and so I was well immersed in the culture of medicine. I was hesitant to get a second opinion because I somehow felt that it was inconsiderate to my local onc. I actually had a conversation with our Dean of Graduate Studies, who encouraged me without condition to seek out as many opinions as I wanted because it’s my health. Somehow I needed permission to do it.”
As the community has grown, so have the opportunities for communication and interaction with it. For example, the life science partner wanted to provide patients with up-to-date PNET treatment options. Together with Inspire, they created a webinar exploring PNET treatment options with Dr. Eric Liu, Director of the Neuroendocrine Center at Vanderbilt University Medical Center.
Continuous patient engagement in a safe environment is a significant benefit of having a dedicated community on Inspire. Sponsoring a community not only benefits patients – giving them up-to-date information on clinical trials and treatment options – but it also provides opportunities to incorporate the patient’s voice in drug development and evaluation. The synergies and special features of a sponsorship provide significant and strategic value to help life science companies achieve their short- and long-term marketing, research and access goals.
Read our case study to learn specifics about the growth of this community and the benefits of sponsoring an Inspire community. Click here to learn more about sponsoring a community through Inspire Launch.
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