Confronting & Coping With Pancreatic Cancer Diagnosis

Receiving the diagnosis of pancreatic cancer can be unnerving, confusing, and disorienting. You have mixed emotions of surprise, disbelief, and anger; and you may feel sad and disappointed, with fear and uncertainty for the future. But you are not alone.

pancreatic-cancer-coping

In Australia, around 3000 people were newly diagnosed with pancreatic cancer in 2011. By age 85, 1 out of 56 Australian men found they have pancreatic cancer, 1 in 71 for women. Pancreatic cancer is the tenth most common cancer for Australian women, and the ninth most common for men. [1]

I’ve just been diagnosed with Pancreatic Cancer, what can I do to cope?

* Be informed.

If you have no idea what pancreatic cancer is, start by asking your doctor. He or she can explain how this type of cancer affects your body.  Ask your doctor about the symptoms linked to the cancer and how to manage them.

It is important to know what kind and stage of pancreatic cancer you currently have. Some forms of pancreatic cancer, when diagnosed early, generally have a better outlook compared to those who were diagnosed in advanced stages [2]. Knowing the cancer stage can help you understand what treatment options are available for you.

You should know whether you can

  • whether surgery is an option,
  • need chemotherapy,
  • radiotherapy,
  • endoscopic treatment,
  • or a combination of these treatments.

You can ask about what to expect with each treatment. Know how long each treatment will be or what side-effects your medications or therapy might bring. Ask about whether there are

studies to test new forms of treatment, such as new drugs, new approaches to surgery or radiation treatments, and novel methods such as gene therapy for pancreatic cancer (clinical trials) and whether you are eligible to be in one. [3]

You can also find out about what tests are available to monitor your progress.

There might be an overwhelming amount of information to gather, but as Francis Bacon once said, “Knowledge is power.” The more one knows, the more one is able to control events. [4] The more you know about your cancer, the more empowered you become in picking the treatment that best suits you. Doctors can give advice and offer you options, the right to make decisions about medical treatments [5] remains yours – best make it an informed choice.

* Establish a support system

Devastation, disbelief and anger are only some of the emotions you might experience when diagnosed with pancreatic cancer. By affecting your family role, work, relationships, and daily activities, being diagnosed with cancer is associated with high levels of psychological stress.

Concerns about side-effects of treatments, loss of personal and social control, progressive weakening of the body, and thoughts of potential death is manifested through anxiety and even depression.[6] This is the time when connecting with people is essential.

There is no easy way to live with Pancreatic Cancer, but having a good support system helps keep the burden lighter.

Talk to a spouse, a parent, a sibling, or your children.

Communicate your worries and concerns about your condition. A family friend, a spiritual leader, a family counsellor, a palliative care specialist, or your GP, can give you guidance in processing your emotions regarding how pancreatic cancer is affecting your body and your being.

Having a support system creates:[7,8]

  • emotional support – family members can offer esteem, trust, concern, and a listening ear
  • instrumental support- friends and relatives, nurses and carers aid in money, time, labour, and/or in kind
  • esteem (appraisal) support – friends can give encouragement and affirmation [9], and
  • informational support – mates can give information, advice, instruction, and problem solving suggestions to be able to assist with everyday routines.

Support outside the immediate circle of family and friends is also possible. You can associate and connect with different pancreatic cancer survivors through phone or mail. Helplines are also available from the local government agencies and international organisations.

Participating in a support group for people with cancer has been found to significantly improve the emotional state (anxiety and/or depression), develop the relationship with a spouse, boost adaptation to illness, and overall enhance quality of life.[10]

 * Take care of yourself

Pancreatic Cancer can affect your diet. [11] You may need to see a dietitian and have special dietary arrangements. Problems with how your body processes food may arise (like diarrhoea, nausea and vomiting, mouth ulcers, etc.) but coping with dietary symptoms at home is possible. [12, 13]

Try to keep active by engaging in regular exercise. If you have not done any form of regular exercise before your diagnosis, start with small changes to your daily activities.[14]  One study documented exercise in a person with pancreatic cancer helped them sleep better, decreased psychological distress, and managed cancer-related fatigue, among other benefits.[15]

* Consider complementary therapies for handling symptoms

Complementary therapies is an emerging branch of therapy used to manage symptoms of pancreatic cancer. The National Cancer Institute defines Complementary Therapies as “treatments used along with standard medical treatments, but are not considered as standard treatments”. With increasing support to study CAM scientifically, more therapy options are available to use, along with standard treatment, in managing cancer symptoms.[16]

* When necessary, consider hospice care

Talk to your doctor about Hospice Care. It is a specialised kind of “medical, psychological, and spiritual support”, “provided to patients and their loved ones when cancer therapies are no longer controlling the disease”. The focus of hospice care is control of symptoms and pain related to cancer, keeping you as “comfortable as possible near the end of life”. As one cancer institute states, “Choosing hospice care doesn’t mean giving up. It just means that the goal of treatment has changed”.[17]

* Consider making Advance Directives

Advance Care Directives is a legal document that helps others (family, friends, and medical personnel) know what future or end-of-life health care and living arrangements you want if the time comes that you are unable to make the decision yourself due to circumstances (like sudden physical deterioration leading to coma, being in an accident, having dementia or a serious mental health problem). Advance directives differ from region to region and state to state, so it is best to check which laws apply to you. [18,19]

* Consider making an Enduring Power of Guardianship

This is a legal document where you can appoint one or more individuals to serve as an enduring guardian. He/She/They will be responsible for making “personal, lifestyle and treatment decisions on your behalf” [20]

As with advance directives, different states have different forms and laws governing the Enduring Power of Guardianship.

* Consider setting finances and will

Talk to your GP or a palliative care specialist to help you with (disability) grants and expenses related to your daily living, heating, and household costs. They may be able to help claim benefits for you and your carer(s).

Although advance directives and enduring power of guardianship are legal documents, they cannot be used in decisions regarding legal concerns and future finances. Seek legal advice when you make an Enduring Power of Attorney. It is a legal document giving power to an appointed person to “manage your legal and financial affairs”. This includes “buying and selling real estate, shares and other assets, operating your bank accounts and spending money on your behalf.” [21]

In the unfortunate event that you may face death related to the severity of your pancreatic cancer, it is wise to be prepared by making a Will.  A legal Will allows you to decide what will happen to your assets when you die.

We’re All Different

There is no standard pathway to confronting pancreatic cancer – each person has a different set of circumstances at the time they discover they have cancer, and each person’s journey will be different. Knowing where to go and what to do next after receiving your diagnosis can guide you how to cope, confront, and face pancreatic cancer.

Pancare Foundation provides information for people affected by pancreatic cancer. Please visit our website for information on symptoms, causes, treatment, specialist information, online resources (webinars, videos) and telephone support group information.

https://www.pancare.org.au/patient-support-services/pancreatic-cancer/

Pancare Foundation, Patient Handbook for people affected by pancreatic cancer

Pancare holds a bi-monthly support group at the Ivanhoe Uniting Church in Ivanhoe, Victoria. For more information, please contact 1300 881 698 or email info@pancare.org.au.

Additional resources for coping with pancreatic cancer:

Cancer Council Australia

13 11 20

Finding Support by The Australian Government, Cancer Australia

Pancreatic Cancer – What to Expect by Cancer Council

Understanding Pancreatic Cancer, A guide for people with cancer, their families and friends by Cancer Council Australia

Diet and Nutrition-Related Concerns:

Dietitians Association of Australia

Phone: 1800 812 942

Australian Cancer Research Foundation

Pancreatic Cancer, Australian Cancer Trials by the Australian Government, Cancer Australia

Pancreatic Genome Initiative

Health Directive and Enduring Power of Attorney Forms per State

Further Reading – References & Resources