Understanding Your Options

First things first, Understanding the staging of pancreatic cancer is crucial as treatment options will be decided based on the current stage. Is the cancer resectable or unresectable? Can surgery be performed? What’s the treatment plan, and when does it start?

There are set questions you should be asking and your health team should have the answers too. The following questions are sorted conveniently by Craig’s Cause and available for download.

Once a treatment plan is decided, don't allow delays in starting chemotherapy. Immediate treatment is essential, as pancreatic cancer can progress rapidly. For patients in smaller provinces like our home province of Newfoundland and Labrador, where specialists in any disease, let alone those from high-volume cancer centres who handle a high volume of Pancreatic Cancer cases, are slim to none) connecting with specialized cancer centres in bigger cities like Toronto or Vancouver for second opinions can be invaluable. Proactively inquiring about referrals to these centres ensures you receive the best care possible.

Early exploration of treatment options is vital for an effective strategy against pancreatic cancer. Key treatments include surgery, chemotherapy, radiation, and emerging therapies like immunotherapy and targeted drugs.

Understand the Role of Genetic and Somatic Testing

Pancreatic Cancer Action Network (PANCAN) might have trademarked the term, but for good reason. When my sister and I first plunged into the overwhelming world of pancreatic cancer, we found ourselves navigating a sea of information alone.

We kept coming the terms somatic and germline (genetic) testing from U.S. advocacy groups like PANCAN. Initially, it felt like just more medical jargon, but as we delved deeper, it became clear that these tests could be crucial to my mom’s treatment. Clinical research has shown the importance of these tests in developing personalized treatment plans.

Surprisingly, despite their significance, these tests weren’t part of the initial discussions with our oncologist. It was only after we brought them up—following weeks of our own research—that they were considered.

This experience highlights a concerning gap in the proactive care that patients in Newfoundland are receiving. While our oncologist was undoubtedly committed to my mom’s care, it’s unsettling that we had to initiate conversations about such a vital aspect of her treatment. It raises important questions about the support and information available to both doctors and patients in smaller provinces of Canada.

Somatic Testing

Molecular Biology, Precision Oncology, Precision Cancer Therapies, Targeted Therapy

Somatic testing involves examining the genetic mutations in the tumour itself rather than your inherited genes. This test can reveal specific genetic changes driving the cancer's growth. Knowing these details can guide your treatment in powerful ways. For instance, specific mutations may respond better to particular chemotherapy drugs or targeted therapies, including immunotherapies like Keytruda. Think of it as personalizing your battle plan against cancer.

Here's why somatic testing is particularly beneficial for pancreatic cancer: 

• Targeted Therapy: Some mutations might make you eligible for targeted therapies, which can be more effective and less toxic than traditional chemotherapy.
• Clinical Trials: Understanding the genetic makeup of your tumour might open doors to clinical trials that you wouldn't otherwise qualify for. These trials can provide access to cutting-edge treatments unavailable to the public.
• Prognostic Information: The genetic details can offer insights into your cancer's behaviour and how aggressive it might be. This information helps your healthcare team tailor more precise and effective treatments.

In smaller Canadian provinces, healthcare resources may be limited, and oncologists might be hesitant to suggest somatic testing due to costs and a lack of experience with actionable mutations leading to treatment changes. 

However, discovering actionable mutations can offer additional treatments beyond the standard treatments, potentially improving outcomes significantly. Despite the anxiety and anticipation of waiting for results, taking this extra step is crucial. Somatic testing provides insights into how the cancer has mutated in your body, not just inherited genetic mutations. It’s worth exploring every option in your fight against the disease.

Navigating test results and medical jargon can be exhausting, but remember that you are your best advocate. Ask questions and seek clarification from your healthcare team. Clinical trials were considered for my Mom's KRAS G12D mutation because of promising developments and published results. Sharing results with clinical trial matching services like PANCAN is essential, as it customizes the search based on your biomarkers. Bringing these results to second opinions is also important. Studies have shown that patients with actionable mutations have improved overall survival (The Lancet Oncology, 2020).

The sooner you get these results, the sooner you can identify any actionable mutations. While treatments for current mutations are limited, they do exist, and clinical trials may offer additional options, with potential FDA-approved treatments in the future. Any approved treatment will have started in a clinical trial.

Genetic Testing

Also commonly referred to as germline testing, Genetic testing is essential for pancreatic cancer as it can reveal mutations like BRCA that guide treatment decisions. People with BRCA mutations might respond better to certain chemotherapies, like platinum-based drugs. (Canadian Cancer Society, 2024).

Other mutations, like PALB2, ATM, and CDKN2A, can also influence treatment choices. Genetic testing can also identify hereditary cancer syndromes, helping the families of those with pancreatic cancer manage cancer risks.

Comparing Somatic and Genetic Testing

Chemotherapy Regimens

Chemotherapy will be the standard approach for many in treating pancreatic cancer, often combining drugs to maximize efficacy. Different chemotherapy regimens aim to improve patient outcomes by enhancing the effectiveness of treatment and overall well-being of people living with pancreatic cancer.

1. FOLFIRINOX: Combines four drugs—fluorouracil, leucovorin, irinotecan, and oxaliplatin—for patients with good performance status.
2. Gemcitabine: Administered alone or with other agents like Abraxane, suitable for those unable to tolerate aggressive treatment.
3. Combination Therapy: Utilizes multiple chemotherapy agents for synergistic effects and potentially better outcomes.
4. Neo-adjuvant Therapy: Given pre-surgery to shrink tumors and improve surgical success.
5. Adjuvant Therapy: Used post-surgery to eliminate microscopic residual disease

Surgical Interventions

Whipple Surgery

Surgical interventions may offer the best hope for curative treatment in eligible patients. A successful “Whipple” can significantly extend survival time. 

The Whipple procedure, or pancreaticoduodenectomy, is an operation that involves removing the head of the pancreas, part of the small intestine, the gallbladder, and the bile duct and then reconnecting the remaining organs.

Due to the complexity and potential risks involved, seeking care at specialized centres with experienced surgical teams is vital, which may mean travelling out of the province.

This may be the time to consider second opinions to ensure surgery is feasible and the timing is optimal for the best possible outcomes. Some surgeons may decline to operate, while others may feel they can complete your operation. 

PANCAN, one of the most prominent advocacy organizations for Pancreatic Cancer worldwide, estimates that anywhere between 30-50% of patients eligible for surgery are told they are ineligible.

Advances are being made in the field of Pancreatic Cancer surgery, and we would advise seeking a second opinion from a more extensive cancer Center as our Mother did.

Modified Whipple Procedure (Pylorus-preserving pancreaticoduodenectomy)

The Modified Whipple Procedure, or pylorus-preserving pancreaticoduodenectomy (PPPD), is a surgery used to treat pancreatic cancer and nearby tumors. It’s similar to the traditional Whipple surgery but with one key difference: it keeps the pylorus, the part of the stomach that connects to the small intestine, intact. This helps maintain normal digestion and can reduce complications like diarrhea and major weight loss that sometimes happen after the traditional Whipple procedure.

It has some advantages, such as less blood loss and shorter surgery times. However, it also comes with challenges, like a higher chance of delayed gastric emptying (DGE), which means the stomach takes longer to empty its contents and can slow down recovery (Shrikhande et al.). Even though it might be harder to remove all the cancerous tissue with PPPD, it’s still a good option for patients whose tumours don’t involve certain critical areas, offering a balance between effective cancer treatment and preserving normal digestive function.

Distal pancreatectomy

A distal pancreatectomy is a surgical procedure where part of the pancreas is removed. Specifically, it involves taking out the left side of the pancreas, which includes the body and tail. This surgery might be recommended if a patient has a tumor or other issue in that part of the pancreas.

While it sounds complex, it’s often done to help manage pancreatic cancer or other conditions affecting that part of the organ. The goal is to remove the problematic tissue while preserving as much of the pancreas as possible to maintain its function.

Stent Replacement

Stent replacement is a procedure where an old or blocked stent is swapped out for a new one. A stent is a tiny tube placed inside a duct or vessel to keep it open, and it might be used for things like helping bile flow when it’s blocked by a tumor. Over time, stents can get clogged or move, so they need to be replaced to keep things running smoothly. The replacement is usually done through an endoscope, a flexible tube inserted through the mouth or another natural opening, making it a less invasive option than surgery.

Celiac Plexus Nerve Block

The celiac plexus nerve block targets the nerve network that transmits pain signals from the pancreas and surrounding organs. By blocking these signals, people living with Pancreatic Cancer can experience substantial pain relief, which is often more effective than oral medications alone. It may also reduce the need for high doses of opioids. 

One thing my Mother was adamant about was not taking more pain medications than she had to. When the palliative care doctor would call and ask how her pain was, he was astonished when my Mom would insist that she found more relief from everyday Tylenol.

My sister and I became aware of the procedure about a year into my Mom’s journey. We discussed it with our Oncologist, who had to do a little digging about who exactly performed the procedure in Newfoundland (again, small-town challenges, not her fault but of the system). The method is quick and painless, and my Mother agreed to do it after some hesitation.

Unfortunately, after she went in, they realized the tumour had wholly enveloped, and there wasn’t a clear path through to the nerves. For that reason, the surgeon had to abort. This was another letdown and one that we wouldn’t want others living with Pancreatic Cancer to experience.

Therefore, it’s crucial to have the conversation with your Oncologist early so they can perform the procedure (if it will benefit you) when the window is there.

Immunotherapy

Immunotherapy has emerged as a promising frontier in pancreatic cancer treatment in recent years. Previously, ”cold tumours” like Pancreatic Cancer were thought to be somewhat immune to immunotherapy, but progress is happening. For those with high Tumor Mutational Burden (TMB) like my Mom, Keytruda exists as one of the treatment options.

Compared to standard treatments, such as chemotherapy and radiation, immunotherapy leverages the body's immune system to target and destroy cancer cells. This approach aims to enhance the body’s natural defences to combat the disease better.

Early clinical trial results show positive outcomes, although more research is needed to understand its potential benefits and limitations fully. Immunotherapy treatments like immune checkpoint inhibitors, CAR T-cell therapy, and cancer vaccines are at the forefront of these innovations. Patients with specific genetic markers could respond particularly well to these treatments.

However, access to immunotherapy can be limited, especially in smaller provinces in the Atlantic areas like Newfoundland. Although it was too late in Mom‘s disease for her to try Keytruda when we discovered her TMB, we heard many stories of Newfoundlanders making their way to a more prominent cancer center in Toronto for immunotherapy.

For our next part in the Intro to Advocacy series, we’ll talk about how to optimize nutrition and quality of life, including some of the recipes that worked for us, the role of pancreatic enzymes and the importance of having conversations about palliative care early on .