Choosing a Provider: The Case for the Specialist

“We cannot direct the wind, but we can always adjust the sails.”

— Sailor's Wisdom

It’s important to recognize that not all doctors have the latest knowledge or sufficient experience in treating neuroendocrine cancer patients. In neuroendocrine cancer care, it is essential that you find the right specialist to “captain your ship” and direct the course of your care from the very beginning. It cannot be overstated—you deserve the right treatment by the right team at the right time. Therefore, it’s important to have someone at the helm who knows the boat, knows the waters, and can adjust the sails for an optimal journey.

Specialists in NET have the experience and expertise to apply the appropriate treatment option at the right time for the optimum outcome. The more NET patients they’ve treated, the more likely it is that they have seen conditions similar to yours. Early consultation with an expert can lead to properly sequenced treatment plans that consider both the present as well as the future. Careful disease management over years is often needed.

How do I find a NET expert? Here are some suggestions:

• Ask your diagnosing physician to help you find a specialist.
• You may want to engage your primary care physician or a trusted medical professional in the search for a specialist.
• NET patient organizations can provide information regarding NET centers and NET specialists, and many have links to talks given by various NET experts by specialty or disease type.
• Contact NET patient support and advocacy groups to learn names of providers in your area and beyond.
• There are online patient groups organized by disease type that may help you find other patients on a similar path who have received great care in a particular region.

The Multidisciplinary Care Team

One value of finding a NET expert to serve as the captain to guide your treatment is that he or she will likely have access to the best “crew,” a multidisciplinary group of specialists, each with expertise in a specific area, who contribute to charting your treatment course. Medical specialties that may be represented on your multidisciplinary care team include: pathology, radiology, interventional radiology, nuclear medicine, surgical oncology, medical oncology, endocrinology, gastroenterology or pulmonology. Your care team could also include PAs, NPs, nurses, dietitians, respiratory therapists, counselors, social workers, pharmacists, or patient navigators.

While the multidisciplinary approach is optimal, it may not always be achievable. NET specialists are not found in every medical center or even in every cancer center. Traveling to centers that have NET specialists may not be an option due to economic, health or logistical reasons. Insurance networks may dictate which physicians you can see. You may be able to surmount these barriers and emulate the benefit of a multidisciplinary care team if you find a local physician who is willing to research on your behalf and seek consultation, review the latest guidelines on NET treatment paths, and refer you to other providers as needed for your care or for a second opinion. Out-ofstate specialists may offer virtual consultation by phone or video conferencing if allowed by their state medical licensing board. Medical files and discs containing CT, MRI or PET images can be sent to specialists for review. Due to the rarity of this cancer, many insurance plans may approve consultations as needed.

Finding a Doctor You Trust

Here are some questions you might consider asking to understand if your doctor has the necessary expertise in NETs to manage your care:

• How many NET patients are you currently treating? A low number may raise concerns about experience level.
• Would you be willing to consult or collaborate with a NET expert?
• Are you familiar with and are you willing to consult the latest expert guidelines for treating neuroendocrine tumors by the National Comprehensive Cancer Network (NCCN) and the North American Neuroendocrine Tumor Society (NANETS)?
• Do you have a multidisciplinary team to collaborate with on my case? Will my case be discussed by a tumor board (a regular meeting of specialists who discuss treatment options for cancer patients)?

It’s best to find someone with whom you feel comfortable talking about your disease and whom you trust, whether they are an expert or not. If you read about a treatment online or hear about something in a support group, you should feel free to ask questions about what you learned and IF it might be appropriate to consider, either now or later. Do not assume that a treatment or intervention you hear about is appropriate for you but do expect your physicians to listen and advise you. In choosing a physician, take note of your ability to relate to and communicate with him or her during your initial appointment. Does the physician give you enough time during the visit to understand your situation and appear to listen carefully to what you are experiencing? If the physician is not providing satisfactory answers or is dismissive of you, it may be a sign to move on.

Quality Communication with Your Healthcare Providers

Communication is a two-way street, and you can influence the traffic in both directions. As a patient, try to organize your thoughts and questions ahead of communicating with a healthcare provider. Prioritize your questions and concerns. Answer your provider’s questions as fully as you can. Listen closely to what he or she is saying and repeat it back if you are unsure of its meaning. Work toward open and honest conversation, which is not always easy when discussing personal matters.

One of the most important things when patients are going through their NET journey is the honest conversation they need to have with their providers. When you’re able to establish that honesty up front, it really helps to build trust within the relationship. When both sides are able to open up, and listen to each other, you can start to understand each other fully.
--Daneng Li, MD

Other issues that can affect your health, including stress and depression, can arise during cancer treatment and need to be addressed. Be sure to share these and any other concerns with your physician even if they may not seem to be related to your disease. The same goes for embarrassing symptoms like diarrhea and excessive gas. These could be due to a number of factors, including hormone oversecretion, insufficient absorption of enzymes and other nutrients, or changes in your body following a surgical resection. Your doctor needs to know what’s going on with you and what, if anything, changes over the course of your disease in order to adjust your treatment or recommend other remedies that will improve your quality of life.

It is quite common to have difficulty remembering what has been said in an appointment. There is a lot on the line, and the emotional stress can affect your recall. It can be helpful for a family member or friend to accompany you and take notes. With current technology, it is also possible to record the appointment on your phone or tablet device. Always ask your doctor for permission before doing this. This is especially helpful when a loved one or caregiver cannot attend the appointment and offers the opportunity to review and debrief together at a later time.

It is usually a process to encourage good communication and help patients feel comfortable speaking up. I do ask a lot of detailed questions and take my time to listen to the patient. As well, I personally appreciate when family members come with the patient to a visit, as it helps all of us to enhance communication and navigate through difficult topics.
--Boris Naraev, MD, PhD

Do not assume that all of the healthcare providers on your team are on the same page. Try to confirm that your primary or lead physician is keeping your other doctors informed. You may have to obtain and share your records with them if this is not happening. If the provider uses a web portal to communicate with patients, be sure to set it up and try it out right away. Find out if emails are an appropriate way to ask questions. Learn what each provider’s stated response time is so you know when to follow up if you haven’t heard back. Ask how you can reach a provider after hours in case you have an urgent question or issue.

Taking care of neuroendocrine cancer is really a team effort. Unfortunately, communication can be difficult, and we frequently rely on the patient and family to help interface between specialists and local health professionals. Never be shy about following up on documents and reports. Help us by keeping good records and bringing them to your visits.
--Eric Liu, MD, FACS

Making Treatment Decisions

Caring doctors will always support your efforts to understand your disease. Work to foster open, honest communication with them. Share your hesitations and struggles. Don’t be afraid to ask questions or request a second medical opinion (or even a third) before making a big treatment decision. Patients who are secure in their treatment decisions often report improved outcomes, including better quality of life. Remember, you are a vital part of your care, and what you bring to the process is the most important filter of all.

"The more quality information you have, the better decision you can make. Working with a specialist helps get more information, detail, and experience about the different treatment options, which can fill out the picture and help you evaluate what is right for you. Such choices can be very personal too. Your thoughts and feelings about treatment choice are critical. The most important thing is to remember that we are here to help you."
--Eric Liu, MD, FACS

Following this process may help with your decision-making:

1. Start with yourself. List your goals for treatment and preferences for your quality of life, and anything else that is important to you. Do you prefer to be treated close to home? Do you want to continue working during treatment?
2. List any financial, insurance and logistical considerations that might affect your decisions.
3. Ask your medical team about the effectiveness and side effects of treatment and the time it will take to recover.
4. Ask what else is out there. Clinical trials can be an avenue to therapies that show promise but are still considered to be “investigational.” It is important to remember that statistical data from scientific studies is averaged across a large patient population, and your experience with a particular treatment might be different from the “average.”
5. In addition to getting a second opinion, request that your case be reviewed by a multidisciplinary tumor board if available.

“There are so many layers of information, and it takes repetition to begin to integrate it all. We start with questions about diagnosis, treatment options and prognosis. Most of that initially comes from the doctor. That information is enhanced and supplemented by many other sources, including primers like this, websites, and patient support groups. It’s easy for patients to get overwhelmed. The knowledge base is so deep that it’s our responsibility as providers to make sure we supply the information at a time when it can be accommodated and at a time when it’s relevant.”
--Hagen Kennecke, MD, MHA

Decision-Making Challenges

While consultations can be extremely helpful, they can also create confusion if your consultants recommend different courses of action. You may feel pressured by loved ones to choose a particular medical intervention. This can lead to tremendous stress and discomfort. Everyone involved needs to respect your decision—a decision based on your goals and what you can tolerate. Having respectful and caring conversations with your loved ones may help them understand your decision and the reasoning behind it. Social workers and therapists can help navigate these conversations if emotions run high.

You may get many suggestions from friends and family. Whether it is finding a clinical trial, taking a dietary supplement or following a special diet, everyone seems to have an opinion. During this difficult time of adjustment to your rare cancer, unsolicited advice can be a drain on your energy. If so, ask a trusted friend or relative to run interference for you. Or redirect the conversation by saying, “What I really need now is...”

The fear and anxiety that can accompany a cancer diagnosis can be very limiting and hard to overcome. Decision fatigue can set in. Consider asking to speak with a social worker or psychologist if you find things overwhelming and need more help.

“Sometimes I find family members are kind of like the arms-length, third-party adjudicator that is needed. They are so key in helping to make some of these tougher decisions. I find that the primary local oncologist and the primary care provider can be really helpful as well.” --Hagen Kennecke, MD, MHA