A diagnosis of RAS-positive pancreatic ductal adenocarcinoma (PDAC) can be a lot to handle. It's often tough to process all the test results, medical terms, and treatment options.
That's why it's important to work closely with your medical team. They can explain your options, answer questions, and guide you on your cancer journey. With the right support, you can feel more confident about how to make the best decisions for your future health.
The Role of Genes in PDAC
PDAC can be a complex disease that's hard to make sense of. It involves different gene changes, or mutations, that affect how the cancer grows. Your doctor can explain how these gene changes, which usually happen in the KRAS gene, shape your outlook. You'll want to know as much as possible about any mutations your tumor has because they can determine your treatment options.
"There are two important things to know: which type of KRAS mutation is present, and if it's not present, is there an alternative driver," says Brandon Huffman, MD, an assistant professor of medicine at Harvard Medical School and a medical oncologist at Dana-Farber Cancer Institute in Boston.
Why Is It Important to Be Involved With Your Treatment?
Your health team is an important source of information and support. Being involved in your treatment can help you:
- Better understand your cancer. Research shows that people who actively take part in their cancer decision-making are more informed and understand their options better.
- Make decisions. More knowledge means you make better decisions about treatments.
- Build relationships. When you ask questions and share concerns with your doctor, they can help tailor information to better support you.
- Have more control. If you're involved, you can have more input into the decisions about your care.
- Find the best treatment. You're more likely to find the best treatment for your needs if you take part in the process.
Huffman says that being proactive can help your outlook.
What Should You Ask Your Doctor?
One way to be involved in your care is to ask your doctor questions. "It's important to talk with your doctor to see if there are any therapies that can be used as a standard of care or are in clinical trials," Huffman says.
Here are some questions you might want to ask if you have PDAC with RAS mutations:
- What specific mutation do I have? ("Ask for the genetic mutation reports," Huffman suggests.)
- Are there any treatments available to target this mutation?
- What treatments do you recommend and why?
- What are the common side effects?
- Would a clinical trial help me?
- Am I a candidate for surgery? Why or why not?
- What other tests or procedures might I need down the road?
- Are there any lifestyle changes I should make?
- Who should I call if I have severe side effects? What about after hours or on weekends?
- Will my insurance cover the treatments?
It's also a good idea to ask questions about your doctor's personal experience, like:
- How many people with PDAC do you treat each year?
- What have the results been for my particular diagnosis?
- Do you work with a team of experts?
- How many surgeries do you perform each year? (if you are a candidate for surgery)
If you plan to have surgery, it's important that your surgeon performs at least 15 pancreatic operations per year.
Getting a second opinion
Sometimes, it's helpful to get a second opinion about your treatment options. Different doctors may have different experiences with your type of cancer. Or they might be able to point you toward a newer therapy in clinical trials.
If you do choose to get a second opinion, you'll likely want to meet with someone at a larger cancer center or academic hospital. Do your research and make sure they specialize in pancreatic cancer. Also, check with your insurance company to see if they cover second opinions.
What Should Your Doctor Know About You?
It's also important to let your doctor know what you care about. You may want to share:
- Your treatment goals. Do you want to do everything you can to cure your cancer? Or, is a good quality of life more important to you?
- What matters to you. If being able to work or travel are top priorities, let your doctor know.
- Concerns you have. Share any concerns you have about treatment side effects or the cancer itself.
- Your medical history. Let them know if you have a history of cancer or conditions like diabetes or pancreatitis.
- Medicines you take. Tell your doctor about all the medicines and supplements you use. Some can interact with cancer treatments.
- Lifestyle factors. Your doctor should know if you smoke or drink alcohol often.
- Mental health issues. Let your health care team know if you struggle with depression, anxiety, or another mental health disorder.
How Can You Manage Treatment Side Effects?
Taking an active part in your health care means you aim to understand your treatment and know what side effects to look for.
"It is also important to communicate when you are experiencing symptoms because they can help discern whether it is from the therapy and how to manage it or the cancer," Huffman says.
Some common side effects of RAS inhibitors include:
- Nausea or vomiting
- Diarrhea
- Fatigue
- Rash
- Muscle and bone pain
- Kidney problems
- Swelling
- Poor appetite
- Trouble breathing
- Liver problems
- Cough
Find out what lab results will help you monitor side effects. For example, if you're worried about liver problems, ask your doctor what markers can tell you if your liver is healthy.
You may want to keep track of your symptoms with a daily log. This allows you and your doctor to look for patterns. If side effects are bad, your doctor can adjust your dose.
Also, be proactive and ask for medicines that can help with side effects. Anti-nausea drugs might help curb sickness. And pancreatic enzyme replacement therapy (PERT) could improve digestion and help you maintain your weight.
What Other Support Might Be Helpful?
Your care team includes more than just your doctor. You might want to seek support from:
- Dietitians. They can help you manage nutrition and maintain strength during treatment.
- Social workers. These professionals can connect you with resources that provide financial assistance, transportation, and more.
- Nurses and care coordinators. They can help guide you through treatments and answer any questions you have.
- Palliative care providers. If you have a lot of pain and symptoms, these experts can make sure you find relief.
- Mental health professionals. Specialists can help you work through mental health concerns, like anxiety or depression.
Sometimes, it helps to join a PDAC-specific support group. These groups connect you with people who truly understand what you're going through. They can give you a space to talk openly and ask questions. Many people also share information about resources and clinical trials in support group settings.
Some organizations that provide support for people with pancreatic cancer include:
- Pancreatic Cancer Action Network (PanCAN)
- Hirshberg Foundation patient support resources
- National Pancreatic Cancer Foundation (NPCF)
These websites provide credible information about PDAC. They also offer various services, like educational programs, online support groups, patient navigator matching, helplines, and other types of assistance.
Takeaways
Life with PDAC can be emotionally and physically challenging at times. It helps to take an active role in your care. One way to do this is to build a good relationship with your doctor and health team. Ask questions and let them know about your goals. Use the support available to help you manage your treatment.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Brandon Huffman, MD, assistant professor of medicine, Harvard Medical School; medical oncologist, Dana-Farber Cancer Institute, Boston.
Triage Cancer: "Why You Should Participate in Shared Decision-Making."
Dana-Farber Cancer Institute: "RAS and Pancreatic Cancer: What You Need to Know."
Pancreatic Cancer Action Network (PanCAN): "Pancreatic Cancer Questions to Ask the Healthcare Team," "Whipple Procedure (pancreaticoduodenectomy)," Communicating with Your Healthcare Team."
University of Utah Health: "Why Patients Should Get a Second Opinion Before Cancer Treatment."
American Cancer Society: "Seeking a Second Opinion," "Questions to Ask When You've Been Diagnosed With Cancer."
Mirati Therapeutics Inc: "Clinical Trial Results."
Amgen: "LUMAKRAS."
Cancer Today: "Tracking Treatment Side Effects Benefits Cancer Patients."
Pancreatic Cancer UK: "Pancreatic enzyme replacement therapy (PERT) for pancreatic cancer."
National Cancer Institute: "Cancer Support Groups," "People in Health Care."
