Access to healthcare professionals who focus on symptom management and supportive care improves patient outcomes and is critical for quality of life.
The World Pancreatic Cancer Coalition recommends that pancreatic cancer patients have their symptom management and supportive care needs addressed at all stages of treatment.
Craig’s Cause Pancreatic Cancer Society strongly recommends that all patients have their diagnosis reviewed and are supported by the following healthcare professionals and organizations:
1. Hepato- Pancreatico - Biliary (HPB) surgeon, who is trained specifically in the complex pancreas surgeries.
2. Medical oncologist, who has an interest in treating pancreatic cancer and has knowledge of clinical trial information BEFORE treatment starts.
3. Nutritionist, knowledgeable about dietary challenges of living with pancreatic cancer.
4. Psychologist knowledgeable in the treatment of a cancer diagnosis for both patients and caregivers.
5. Social worker, who can provide support and guidance to access a number of resources.
6. Palliative Care Specialist
7. Patient advocacy organizations who can provide direct support to patients.
Are Biopsies Necessary?
Yes! Pancreatic cancer is not one disease that follows one pathway. Different types of pancreatic cancer respond to different treatments. Up to 10% of pancreatic cancers are not traditional pancreatic cancer. Other types of cancer (like melanoma, ovarian cancer, renal cell carcinomas and others) can spread to the pancreas. Lymphomas and pancreatic neuroendocrine tumors also can present as a pancreatic mass. To receive the best care you must find out what type of pancreatic cancer you have, which can only be determined by a biopsy. Additionally, to access most clinical trials, a tissue diagnosis is required.
Although 15- 20% of pancreatic cancer patients are eligible for surgery, research indicates that patients are not always informed of this option. Surgical removal of the pancreas tumour is the only curative treatment for pancreatic cancer. It can also offer long-term control of pancreatic cancer.
Craig’s Cause Pancreatic Cancer Society strongly recommends that patients diagnosed with pancreatic cancer are referred to a HPB (Hepato-Pancreatico-Biliary) surgeon, who is a specialist specific to treating benign and malignant diseases of the liver, pancreas and biliary tree.
Depending on the diagnosis, there are three major procedures used to remove pancreatic tumours. These are:
Pancreatic cancer patients have higher Quality of Life scores when they receive supportive care (symptom management and palliative care).
Craig’s Cause Pancreatic Cancer Society strongly recommends that every patient diagnosed with pancreatic cancer is referred to a medical oncologist, experienced in treating pancreatic cancer patients.
Chemotherapies are powerful drugs which are typically given intravenously (I.V.), but can now sometimes be administered in pill form or through injections. Currently, all chemotherapies used to treat pancreatic cancer are administered by I.V. at this time.
Chemotherapy drugs disrupt the “growth program” of cancerous cells; however, they also disrupt the “growth program” of normal cells. It is important to remember that unlike our healthy cells that grow, die and rejuvenate, cancerous cells just continue to grow (they forget how to die). Cancerous cells are not reprogrammed to grow, once they die. If we can get the cancer cells to die, they will stay dead. The goal of chemotherapy is to disrupt this cancer cell growth.
A medical oncologist is a physician who specializes in the diagnosis and medical treatment of cancer and its complications.
Patients are typically referred to a medical oncologist after being diagnosed with cancer but occasionally may see one before a cancer is confirmed.
Depending on a patient’s diagnosis and stage of disease, medical oncologists may recommend:
Neoadjuvant therapy before surgery is recommended when a cancer cannot be removed initially; however, surgery may be possible if radiation, chemotherapy or a combination of these treatments can shrink the mass. Additionally, neo adjuvant therapy is being used with the possibility of prognostic improvement, however, for resectable pancreatic cancer this remains controversial.
Adjuvant therapy after surgery may be recommended for 3 reasons: a) The surgeon may not have been able to remove the cancer completely, so treatment may be used to help shrink or control what was left behind. b) Chemotherapy may be used to reduce the risk of the cancer coming back in the future. c) The surgeon was unable to remove the tumour at all.
Palliative or symptomatic and supportive care is recommended to control the disease and prolong survival, to minimize or improve the symptoms, improve or maintain function and quality of life, and to minimize problems from the disease.
Gemzar® (Gemcitabine) was approved in 1996. It can be used prior to surgery (neo adjuvant therapy) and after surgery (adjuvant therapy), as research supports the benefits, in terms of patient survival.
In 2011, FOLFIRINOX was approved in Canada as a first-line treatment for metastatic pancreatic cancer. FOLFIRINOX is a combination of 4 drugs including 5-FU/leucovorin, irinotecan, and oxaliplatin. Clinical trials have demonstrated positive results and, as a result, FOLFIRINOX has become a standard of care of metastatic pancreatic cancer. This treatment is often recommended only for patients who are healthy enough to tolerate the side effects.
In 2014, ABRAXANE® (Albumin-bound Paclitaxel) was approved in Canada and is used in combination with Gemzar® (Gemcitabine) as a first-line treatment for metastatic pancreatic adenocarcinoma.
There has been no phase 3 randomized clinical trial study to date to compare which regimen FOLFIRINOX or gemcitabine + Nabpaclitaxel so superior and therefore both are used as first line treatments for metastatic pancreatic cancer.
Patients can receive treatment after undergoing pancreas surgery however choice of treatment is based on each individual case.
There are two treatment options available for patients, but it is one or the other. FOLFIRINOX OR Capecitabine + Gemcitabine.
ONIVYDE® , or liposomal irinotecan, when used in combination with 5-FU (Fluoroouracil) and leucovorin, has been the only drug identified to date to have a survival benefit in the second line treatment of pancreatic cancer after progression on gemcitabine-based therapies based on the NAPOLI-1 phase 3 study (Wang-Gillam A, Li C, Bodoky G, et al. Nanoliposomal irinotecan with fluorouracil and folinic acid in metastatic pancreatic cancer after previous gemcitabine-based therapy (NAPOLI-1): a global, randomised, open-label, phase 3 trial. The Lancet 2016;387(10018):545-557.)
While it has obtained Health Canada approval in August 2017, it has not been approved for coverage of funding in Canada to date. Some private insurance plans may cover funding of this drug currently.
There are a variety of medicines which are available to treat the symptoms of pancreatic cancer and the side effects treatment. These include:
Pain Medication- Pain is a serious issue for many diagnosed with pancreatic cancer. Please see page on Pain Management
Celiac Plexus Nerve Block- The pancreas sits on a nerve bundle which can cause pain. This nerve bundle can be frozen (just like a tooth can be frozen, at a dentist's office).
Appetite/Energy Stimulants- The pancreas is involved with nutrition, so pancreatic cancer can cause weight loss and malabsorption. There are medications that can stimulate appetite and assist in the absorption of foods.
Anti-Nauseants- Patients often experience nausea and/or vomiting, making eating difficult. There are medications that can prevent feelings of nausea and may prevent vomiting.
Many medical oncologists work with a primary care nurse. If there are issues that the patient would like to resolve, they may feel more comfortable speaking with the primary care nurse.
In closing, it is important to remember that a medical oncologist is a very important member of a patient's medical team, so it is important to find one who is willing to work with the patient and their primary caregivers. If a patient is not comfortable with their current medical oncologist, they can request a second opinion. A second opinion can be requested through the current medical oncologist or through the patient's family physician.
This chapter was written in collaboration with Dr. Daniel Rayson MD, FRCPC and Dr. Ravi Ramjeesingh MD, PhD, FRCPC, both of whom are medical oncologists at the QEII Health Sciences Centre, in Halifax Nova Scotia.
Pancreatic cancer patients who participate in clinical research have better outcomes. Clinical trials can advance research and improve treatment options.
The World Pancreatic Cancer Coalition strongly recommends that everyone diagnosed with pancreatic cancer is given the opportunity to take part in a clinical trial.
Clinical Trials (also referred to as Clinical Studies or Interventional Studies) are research studies performed on people and are aimed at evaluating new:
The outcome of the product or approach is unknown. The process has usually been designed to compare a new medical approach to:
The goal of a clinical trial is to produce the best data available for health care decision making through research and to advance medical knowledge and help improve patient treatment and care.
Before a research study meets Clinical Trial criteria, it must undergo a very long and careful research process. Before a clinical trial starts, the research must prove that the trial follows strict scientific standards and will remain safe and effective for participants.
All clinical trials offer patients additional care. The additional care may come in a variety of forms such as:
For an individual to be eligible for a clinical trial they must meet a set of criteria. This is why it is important to discuss the option for a clinical trial, before standard of care has started, when possible.
It means that patients must meet the listed standards. These standards are referred to as eligibility criteria. Participants must meet a list of standards or they will be disqualified.
In Canada, there have been minimal advancements in pancreatic cancer mortality since 1998. Clinical trials are the only way we can change this statistic.
Finding a Clinical Trial that is right for you is very important. Use the button titled "Clinical Trial Finder" above to assist you.
What was once referred to as Palliative Care is now often referred to as Supportive Care. Palliative care can be part of a supportive care program. For this section, we will use the term Supportive Care.
We know that patients who have access to supportive care have improved patient outcomes, making it critical for quality of life. The World Pancreatic Cancer Coalition strongly recommends that pancreatic cancer patients should have their symptom management and supportive care needs addressed at all stages of treatment and their pancreatic cancer journey.
One misconception about Supportive (Palliative) Care is that patients are only referred when they are nearing the end of life. This is not true. Patients can be referred to supportive care at any point during their pancreatic cancer journey.
What is Supportive Care?
Supportive Care is specialized care which focuses on a patient's quality of life, associated with life-threatening illness. It can bring many services and healthcare professionals together for the patient and family, taking on many roles such as:
In Canada, Supportive Care can be provided through a variety of programs, depending on the needs of the patient, family and services available. The following are some programs offered in Canada.
Home Care
This program enables patients to remain safely in their homes, with dignity, independence and quality of life.
Home care can include personal care, respite, essential housekeeping, transportation and nursing care.
The cost of home care can vary from province to province but is often based on your income, the service that is required and the amount of time required. Asking for a referral from your healthcare team may assist in deferring of costs.
Residential Hospice
The goal of residential hospice is to keep the patients as comfortable as possible. Staff will also work to ensure that the patients emotional and spiritual needs are met.
This program provides full time care to patients who are making no further plans for diagnostic tests, resuscitation or other life-prolonging interventions. Patients usually must show that they have explored all appropriate and available supports, but are no longer able to be supported at home.
The cost of residential hospice care programs are often not covered by the public health care system, so the family or patient may be required to pay an additional daily fee.
Hospital
Hospitals have staff who have received specialty training within the palliative care field. They not only work with the patient and the families but also with the patients’ health care providers.
Although hospitals vary depending on provinces and resources, most hospitals have a palliative care ward or a unit. These wards or units are often used to manage symptoms that are more complex or difficult. They often try to create a room for you or your loved one that has privacy and a “home like” feel to it.
Palliative care units may be used for a short period of time or long term support, but stays are dependent on what the patient needs in terms of support.
Personal Care Homes
Personal care homes are also referred to as nursing homes. These personal care homes or nursing homes provide regular palliative care. It is important to understand that you do not have to be a long time resident to receive palliative care services within a nursing home.
Once again, nursing home facilities often have access to teams who have specialized training in palliative care. They will work with the patient, the family and health care providers to ensure that symptoms are managed and that the patient is made as comfortable as possible. Many of the staff are also trained in helping families and caregivers make difficult decisions.
What is the difference between palliative care and hospice care? Palliative care can be offered at any age and stage of the disease. It can be offered along with a curative treatment.
Hospice care offers many of the same services as palliative care, however, the services are used predominantly for patients who have only a few months left to live.
When choosing supportive care, it is important to understand:
• How each service works in the patients province
• The services provided
• How each program is funded
Things to consider
Many families find the financial burdens difficult and challenging, during times of illness. Some hospital foundations may have financial support programs to aid patients and caregivers. Do not be embarrassed to ask about these programs, as they were developed for this very purpose. Asking for a referral to a Social Worker is often the way to start this process.
Each family and patient will have individual needs so there is never a “one fit” program. Looking into each program and deciding which program is best, is recommended. It is important to ask as many questions as you need to, to determine if the services offered match the needs of the patient.
info@craigscause.ca
P.O. Box 8561
Halifax, N.S. B3K 5M3
Call us, toll free:
1.877.212.9582
