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Identifying a Doctor and Facility When You Have Cancer

Continuing the interview with Dr. Simeone - page 2

VC:
These are important questions, but they can also be intimidating from the perspective of a patient, who may feel uncomfortable "challenging" an authority figure by asking about his or her "30-day survival rates" or similar statistics. Also, patients may be concerned that asking for a referral to receive a second opinion may anger their doctor. For these reasons, patients may hesitate to ask questions and seek referrals. What advice would you offer patients with these concerns?

DS:
It's my firm opinion that all experts in this field should fully expect to receive questions from the patient, and not be offended by being asked these critically important questions. Patients should come prepared with a written set of questions. One way to address this is to say, "My reading has led me to understand it is wise to ask certain questions."

VC:
Many times, pancreatic cancer patients live a considerable distance from a major cancer center, yet understand the importance of receiving treatment at a high-volume, multi-disciplinary center. Is it possible to receive a diagnosis, second opinion and/or treatment plan at a major cancer center, then implement the plan with a cancer treatment team closer to home?

DS:
Yes. Distance from the center of care is a common concern, and in my experience, most pancreatic experts in high-volume centers are willing to work with a local oncologist to optimize the patient's treatment plan. So, it's not unusual for part of the plan to be executed in a high-volume center, in particular, surgery, and for a post-operative treatment plan to be executed locally. Frequently, I see high-volume centers and local physicians working as a team to facilitate patient care. This is an ideal situation. It's important to get a treatment plan outlined by experts in the disease, but if the treatment ultimately is going to be quite similar to what would be given locally, then it makes perfect sense to have that treatment plan executed locally by a qualified oncologist.

VC:
What about patients who turn to the internet and/or other sources of information to learn more about specific treatments, perhaps even identifying a protocol that they would like to receive?

DS:
Some patients investigate the disease and come to their initial consultation with specific ideas regarding their treatment. I encourage patients to be well informed and proactive about learning their treatment options. I also think this approach needs to be taken in context with all of the different options for treatment. For example, some treatments may sound great, but aren't well proven, or the pre-clinical data might be weak, even though the treatments are now available in clinical trials. Patients need to do their homework as best as they can, but also allow the well-informed physician to put the entire spectrum of treatment options into an overall perspective for the patient. This includes not only potential risks and benefits of a particular treatment, but also logistical considerations such as the physical, emotional and financial burden of traveling to a specific center for a clinical trial, based on what's known about the efficacy of that trial.

VC:
When a patient comes to a medical 'crossroads', and may consider changing a course of treatment, is it necessary or recommended to then change treatment teams? Also, when is it time to consider experimental therapies or clinical trials?

DS:
There are times, during the course of treatment, when there needs to be a review of how things are going, especially for a disease like pancreatic cancer, where a majority of patients are not cured with surgery up-front. It is important to talk with your oncologist about whether it's time to change course and try a new treatment. Both the patient and doctor should be open to considering options both locally, and at other cancer centers, especially if the treatment team has exhausted all approaches that they have to offer.

The decision about whether to change treatment teams and/or centers is the patients call. Part of it will depend on how comfortable the patient feels with the physician, including how knowledgeable he or she is about the range of available treatment options. And certainly, it never hurts to get a second opinion from a "fresh eye." Frankly, there remains a fair amount of variability in treatment options presented to patients based on the level and areas of expertise of the medical expert making the recommendations.

So, I encourage patients to seek second opinions, especially when they're facing a crossroads in the management of their disease. Today, there are many promising clinical trials that may offer improved treatment for individuals with pancreatic cancer. From day one, when the treatment plan is outlined, the patient should ask about different treatment options, including clinical trials. Most oncologists are familiar with clinical trials that are available, not only at their institution but around the country. The patient and his or her physician can together decide whether a clinical trial might be appropriate. Trials need not be reserved for people who have failed standard treatment.

One final item worth mentioning is that there are also physicians and scientists who are trying to make inroads to better treat pancreatic cancer. As a patient, you can help by considering participation in clinical trials. These research efforts are critical to help us identify better treatments that will improve patient outcomes in the future.

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Helpful Resources:
List of NCI-Designated Comprehensive Cancer Centers

CancerNet
Cancer.Net provides timely, oncologist-approved information to help patients and families make informed health-care decisions, such as Finding a Treatment Facility, which is also available as a free Podcast.