About Pancreatic Cancer

THIS IS A JOURNEY

By the time you are looking at this page it is likely someone has told you that you may have pancreatic cancer. At this stage, pancreatic cancer may only be one of several possible diagnoses. This page will give you an idea of the steps and tests that may be taken from here to definitively confirm or exclude the diagnosis of pancreatic cancer. If you already have a definitive diagnosis of pancreatic cancer this page also contains information about potential treatment pathways.
This page is an attempt to give patients and their families a rough road map for the journey with pancreatic cancer. It is not an exhaustive source of information, and if you have questions raised by this page please speak to your surgeon or treating team. It is possible that your investigations and treatment will differ substantially from the steps below. Your doctor will tailor an approach specifically for you, depending on your unique circumstances. This page cannot and should not replace the specific advice of your doctor.
At the Australian Pancreatic Centre your care may flow from one specialist to another during your treatment. To help keep this as smooth as possible and to facilitate rapid progression to appropriate treatment the Pancreatic & Neuroendocrine Cancer Care Coordinator provides continuity & a consistent point of contact for patients.
This may be as simple as helping you find a community dietician or as complex as helping you navigate between public and private centres or fast tracking your treatment by putting you in touch with the most appropriate specialist.

EARLY SYMPTOMS

Your initial symptoms may have included one or more of these
  • General weakness & lethargy
  • Weight loss
  • Loss of appetite
  • Upper abdominal pain
  • Jaundice: yellow skin and eyes, dark urine and pale stools
  • Nausea and vomiting
  • Change in bowel habit, more likely diarrhoea
Your local doctor may have referred you to a gastroenterologist or general surgeon, or have arranged an ultrasound or CT (CAT) scan. This scan has detected or suggested a mass in the pancreas. A mass in the pancreas does not automatically equal cancer but it does need further investigation.

SPECIALIST SCAN

After referral to an Upper GI or HPB surgeon, such as Professor Samra or Dr Mittal, a repeat scan is likely to be needed.
This will be a high resolution CT or MRI of the pancreas.
The results of this scan will then be discussed at a radiology or multidisciplinary team meeting where the features of the mass will be discussed and the next step to confirm the diagnosis determined.

IF YOUR SCAN SHOWS A CYSTIC LESION

Your scan results may include words like “cystic” which means fluid filled.
Cystic pancreatic lesions include benign lesions and premalignant or low grade malignancies. These are different to “pancreatic cancer”. The different types of cystic lesion can look very similar on images but they require different management. Careful examination of the images by an experienced diagnostic radiologist is undertaken and the features identified on the imaging are discussed with the surgeon and team.
Benign lesions without suspicious features such as pseudocysts and serous cystic neoplasm (SCN) are managed to control symptoms. You and the surgeon will have a discussion about the best management for you. Your options include watchful waiting but surgical removal may be discussed.
Features on the scans which suggest low grade or premalignant lesions such as intraductal papillary mucinous neoplasm (IPMN) and mucinous cystic neoplasm (MCN) warrant further investigation.
Blood tests including tumour markers, if not done before, and a tissue biopsy are now likely to be done. Obtaining a sample of tissue from the lesion is done by Endoscopic Ultrasound. One of our experienced gastroenterologists introduces an endoscope through the mouth into the duodenum alongside the pancreas and localizes the lesion with ultrasound and a sample by fine needle aspirate (FNA) is taken.
If the CEA reading (carcinoembryonic antigen, a tumour marker) is high and there are worrying features found in the tumour sample then you and your surgeon will discuss the possibility of surgery to resect the tumour.
If your tumour markers are normal and the FNA sample is reassuring then your surgeon may think it reasonable to wait and watch, with a plan to continue following up with them and repeating the scans periodically.

IF YOUR SCAN SHOWS A SOLID LESION

Your initial scan may have shown a “solid” pancreatic lesion. This absolutely requires investigation as these solid tumours are more likely to be malignant than cystic lesions.
The CT images will be reviewed and discussed at a radiology meeting with the multidisciplinary team and an initial management plan decided upon.
At this stage your case also comes to the attention of the pancreatic & neuroendocrine cancer care coordinator who will help you navigate what can be a confusing system and a barrage of tests.
Please remember you may not require all of the investigations described below.

ENDOSCOPY

Obtaining a tissue sample is important to confirm the diagnosis of pancreatic cancer. This is often done with endoscopic ultrasound and fine needle aspirate (EUS & FNA).
However, if jaundice is part of your presentation, your management may first require relief of the obstruction of the common bile duct. This is done with ERCP, an endoscope introduced through the mouth down to the duodenum. Then using X-rays, a stent (plastic tube) is placed through the obstructed part of the duct. While doing this a tiny brush can be used to collect cells from the pancreatic duct and these will be examined by the pathology department looking for cancerous cells.
If no abnormal cells are obtained from the ERCP, your surgeon may ask for an EUS to obtain tissue for a definitive diagnosis.

PATHOLOGY

The pathology result determines the next steps in management.
80% of pancreatic tumours are pancreatic ductal adenocarcinoma.
A small percentage (3-5%) are found to be pancreatic neuroendocrine tumours (PNET). Their management differs but PNETs are still managed by the multidisciplinary team.
The next steps in management refer to pancreatic ductal adenocarcinoma, which we will continue to refer to as pancreatic cancer for simplicity.

FURTHER TESTING

Once the diagnosis of pancreatic cancer has been confirmed with a tissue sample, an assessment of whether it can be surgically removed needs to be made.
This is an important assessment made by the radiologist, surgeon and medical oncologist, as the only potential for a “cure” in pancreatic cancer is with surgery, however only a small percentage of tumours will be surgically resectable.
To aid in this decision the team may ask for additional procedures to be performed.
  • PET scan: This is to reveal any small or distant metastases that cannot be seen on the CT scan. The cost of this test is not covered by Medicare, it is worth asking about the out-of-pocket expense when you book this test.
  • Staging laparoscopy: (keyhole surgery) may be performed to make sure there are no tiny metastases on the surface of the liver or near the primary tumour. This is to avoid an unnecessary laparotomy.
 
There are three outcomes from the extensive testing described above:
  • Resectable tumours
  • Borderline resectable tumours
  • Unresectable tumours

RESECTABLE TUMOURS

This decision is made by your surgeon in consultation with the radiologist and medical oncologist.
If they believe the tumour is resectable a discussion with you and your family about the risks and benefits of surgery will be undertaken.
The surgery to remove a tumour from the head of the pancreas is called a Whipple’s procedure and a distal pancreatectomy is surgery on the tail of the pancreas.
It should be noted the procedure to remove the cancer is a lengthy and complicated one. The recovery is equally arduous for the patient. Even if your tumour is resectable, your surgeon may advise against the procedure.
If surgery is thought, on balance, not to be beneficial for you, your surgeon is likely to involve the medical oncologist early in treatment.
Palliative chemotherapy is increasingly being used to help reduce symptoms for patients in whom surgery is not undertaken.
After recovery from surgery the medical oncologist will plan a course of chemotherapy and you will see them frequently for follow up. They may involve the radiation oncologists for advice about radiotherapy options in your case. Your surgeon has less of a role in this phase of treatment.

BORDERLINE RESECTABLE TUMOURS

There is a group of tumours that fall in between being absolutely resectable or absolutely unresectable. This grey zone is known as “borderline resectable”.
The decision to proceed to surgery is a major one and there is often extensive discussion of these cases by the surgeon and medical oncologists.
The management of a borderline case may involve a trial of chemotherapy and radiotherapy called “neoadjuvant therapy” and then reassessment of the tumour.
The CT or PET scan will be repeated to see whether some of the features making it “borderline” are now more favourable for a successful resection.

UNRESECTABLE TUMOURS

What makes a tumour “unresectable”?
  • Metastases in the liver or other organs or distant lymph nodes
  • The tumour is encasing the large arteries to the stomach & intestines
  • The tumour has invaded the surrounding organs ie the stomach, colon or mesocolon
  • The tumour has invaded the major blood vessels, either the inferior vena cava or abdominal aorta
If any of these features are found on CT or other investigations, there is no survival benefit from surgically removing the primary tumour in the pancreas. Despite so much care and the many tests described above, some people will undergo a laparotomy with the intention of resecting the tumour only for the surgeons to find during the operation that it is unresectable.
If a tumour is unresectable, the aim of treatment is the alleviation of symptoms and the extension of life.
This phase is managed by one of the Centre’s experienced medical oncologists in conjunction with the multidisciplinary team.
Palliative chemotherapy has been shown to improve people’s quality of life, as well as giving a modest improvement in life expectancy.
Radiotherapy may be used to treat symptoms as part of this regime, however it can not be used for all patients.
Involvement of palliative care physicians is also a part of good management, as some  symptoms may not be alleviated.

PALLIATIVE CARE AND SUPPORT

At the Australian Pancreatic Centre our approach to treating pancreatic cancer is one of quiet optimism.
We understand that while both doctor and patient know that pancreatic cancer is an ominous diagnosis, there is no need to approach this disease and its treatment without hope.
As part of all holistic treatment plans the treatment of symptoms is of utmost importance. This is especially true in pancreatic cancer, as “cure” is not a word we can often use, we are heavily focused on managing symptoms.
This often means early involvement of palliative care specialists. Palliative medicine is entirely focused on quality of life and relief of suffering. It is not just for people who are dying, palliative medicine is an extension of the treating team, offering advice on symptom management, as well as addressing the emotional and spiritual aspects of life with cancer.
The journey with cancer can be emotionally taxing, please use our page of useful links to help you find someone to speak with. From patient support groups to psychology services, these resources are specialised and experienced in the journey of cancer patients.