NETS Patients’ perspectives
The life of a person diagnosed with cancer changes dramatically in a single moment when they hear the words “you have cancer”. Imagine what it feels like to hear that you have neuroendocrine tumours (NETs), a rare cancer that is “usually” slow growing. Canadians are hearing this news with increasing frequency as the incidence of NETs steadily increases , partially a result of better awareness among the medical profession and better diagnostics. However there are few medical professionals in Canada who truly understand and can effectively treat NET patients. Many suffer for years with misdiagnosis or no diagnosis, even at top Canadian cancer centres. On average it takes 5 to 7 years for NET patients to obtain an accurate diagnosis which results in many having metastatic disease at diagnosis.
NETs are rare neoplasms that involve hormone-secreting tissues and cells everywhere in the body, from the brain (pituitary) to the rectum and virtually every tissue between. They are not only cancers that can grow and metastasize, but they also have a significant impact on patient day-to-day life because NETs make hormones that have debilitating effects on function, both physical and emotional. A complicating factor in the diagnosis and treatment of NETs is that it can present as very slow growing, requiring many years of care and ongoing monitoring or it can also be very aggressive, requiring a more assertive treatment plan.
CHALLENGES IN CANADA FOR NET PATIENTS
A diagnosis of NETs comes with a number of challenges such as late or incorrect diagnosis, once diagnosed lack of access to clinical expertise, difficulty in accessing the most effective and accurate diagnostic tools, coordination of care among several specialists, obtaining accurate and reliable disease specific educational resources and support , burden of a “long-term” battle with the disease and lack of access to clinical trials as research interest and the development of new treatment options are less common in the NET space.
PATIENT IMPACT
NET patients very often find themselves in the position having to quickly become “experts’ in their own diagnosis and self–advocating in an effort to compensate for the inherent shortcomings of our Canadian healthcare system. Lack of healthcare navigators in hospitals and cancer centres often leave patients at a loss as to how to effectively navigate the provincial healthcare systems to obtain the best possible care and effective support. Accessing NET expertise is one of the biggest challenges for Canadian NET patients as there are few “experts” in this country. Additionally, it is well known that a multi-disciplinary approach to NET management results in much better patient outcomes. However our health care system does not necessarily support this model and patients often bear the weight of an inefficient system and the responsibility of self-education as to who are the most important specialties they need to seek and pursue consultations with. Coordinating multiple appointments among various specialists is incredibly challenging for patients and attempting to get the various members of their team to communicate with each other is another challenge that sadly often falls on the patient. Canadian patients need greater access to specialized NET centres, of which there are currently only a handful in Canada. In these centres, patients typically have access to a large multi-disciplinary team and rarely have to co-ordinate themselves.
Two critical components of NET patient care are (i) the current most advanced diagnostic tool, Ga68 PET/CT, and (ii) the nuclear treatment, PRRT with Lu177. Both of these are currently only available in a clinical trial setting at few select centres in Canada. It is not uncommon for NET patients to travel long distances at significant personal expense for access to this diagnostic and treatment, which is financially and emotionally stressful. Both of these tools are incredibly valuable to NET patients and have the ability to dramatically change treatment plans/disease management and very often offer disease stability. The current clinical trial structure is sometimes not fair and there is not enough capacity to support every patient who needs access. Canadian patients need more access and they expect to be able to get it in their own province.
Patients who have the more common, slow growing form of NETs often face years of requiring access to diagnostics, care and resources, which is not necessarily all that common in cancer care although this does seem to be changing with new developments in treatments that result in longer life span. It does not appear though that our healthcare system is structured to provide this long-term support and NET patients can find themselves struggling to get access to supportive programs and end up seeking answers outside of their care centre, and very frequently turn to other patients for support. On the other hand, patients with the more aggressive forms of NETs are not always sure of where they fit within the NET community. Their journey can be very different from the average NET patient and they struggle to find other patients who have travelled a similar path to turn to for support and sharing of treatment plans etc.
In 2014 the Global NET Patient survey was carried out and included responses from 1,928 patients from 12 countries. The survey, the first of its kind, provided a true picture of the devastating impact of this cancer, how difficult it is to obtain a diagnosis and the benefit of the multidisciplinary approach to care. This survey was a first step in global recognition of the challenges specific to this group of cancers and should be used to develop a path forward to ease some of the burden on this patient population.
FILLING THE GAP
In general more and more patients are relying on advocacy and charitable organizations to fill the gaps left by ineffective healthcare systems. In Canada there is only one charitable organization that supports the NET patient community, CNETS Canada. CNETS Canada offers patients in-person support through a 1-800 number and face-to- face peer support groups. Patients can call CNETS Canada to talk about their diagnosis, find the names of doctors close to them who offer care for NET patients and find out where the closest in person patient support group is located. They are connected with a local support group leader if one exists. CNETS Canada also provides patients with a comprehensive resource guide that was developed in partnership with Canadian NET medical professionals that provides much needed information on the various types of NETs, common diagnostic tools and treatment options. CNETS Canada provides patients across the country with access to local patient education sessions chaired by their local NET experts and once every two years a national patient conference brings together NET experts of various disciplines from across the country to present to NET patients on general disease information, latest advances in NETs and what is in the pipeline. These are critically important events for patients to not only learn about their disease but to connect with other patients who have a similar diagnosis. With the wide variety and complexity of NETs even within our own community it can be challenging to find someone with a similar diagnosis.
CNETS Canada also supports Canadian research into NETs through 2-3 grants per year and holds a Canadian NETs Medical and Scientific meeting yearly to bring together the Canadian NET experts to share their knowledge and expertise with the future generation of care providers. Advocacy is another very important aspect to the work carried out by CNETS Canada and in recent years we have been aggressively advocating for increased patient access to the Ga68 PET/CT and PRRT treatment with Lu177 with some success. We will continue our efforts in this area as access is nowhere near where it needs to be.
While there is no doubt that CNETS Canada provides an invaluable service to the Canadian NET community unfortunately as a volunteer led organization with limited resources CNETS Canada is not equipped to move all of the mountains faced by Canadian NET patients. It is more important than ever that we work together with the medical profession and the healthcare agencies to overcome the many challenges.
In addition to the role played by CNETS Canada, it must be mentioned that there are select centres across Canada that are very dedicated to improving the lives of Canadian NET patients and they are doing incredible work on behalf of this patient population, making a significant difference in the lives of patients. We need more of these centres and more partnerships to make significant advances across the country. We must never forget that patients live in every corner of this great country and all of them deserve equal access to expert care.
