How to Effectively Build a Metastatic Breast Cancer Health Care Team

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If you have de novo metastatic breast cancer—breast cancer which has spread at the time of diagnosis—putting together a cancer care team will be new for you. Yet even if your metastatic breast cancer is a recurrence, you may be looking at a new health care team.

Let’s talk about the specialists who will be managing your care, when you might wish to get a second opinion, and how to keep the lines of communication open with your healthcare team.

Your Team

Unlike days gone by when someone with cancer had a general practitioner who managed their care, it’s likely you will have a whole team of healthcare providers to manage your disease.

While this offers specialized treatment and reflects the tremendous advances in cancer care it can be confusing when you are diagnosed. Who is ultimately in charge of your care? Who should you call if you have any side effects? Where should you go if you have a problem on weekends or after hours? And how can you make sure that all of these people are communicating?

The members of your health care team may include:

  • Medical oncologist – Your medical oncologist is often the physician who coordinates the care you receive from other physicians and specialists. She is also usually the one to call if you have any concerns.
  • Primary care physician – Some people, instead, have a primary care physician such as an internist or family physician who coordinates their care. Primary care physicians vary tremendously in their comfort level when it comes to working with people with metastatic cancer and it is important to clarify this early on in your treatment.
  • Patient advocate or cancer navigator – Many cancer centers now have patient navigators who play a big role in coordinating the specialists managing your care.
  • Radiation oncologist – If you will need radiation, for example, if you have bone or brain metastases you will probably also have a radiation oncologist. These physicians manage the doses and scheduling of radiation, as well as some of the related side effects.
  • Oncology nurse – Your oncology nurse can be a wealth of information and is often a good first person to call with minor concerns.
  • Palliative care specialist – If you have a palliative care team, these people can manage many of the symptoms of cancer and cancer treatment such as pain control and weight loss.

Second Opinions

Most people with metastatic breast cancer opt to get at least one second opinion. This is true even if they trust the physician they are seeing and are comfortable with the treatment plan put forth.

A second opinion doesn’t mean you don’t trust your physician’s judgment. Instead, it shows that you recognize that the field of oncology is vast, some physicians have more experience with some cancers than others, and those oncologists may have different approaches based on their experience.

Some people are afraid that their physicians may get upset if they bring up a second opinion. This is simply not true. In fact, it’s often expected that people with metastatic cancer will get at least one second opinion and most oncologists would do so themselves if faced with cancer.

An important point to keep in mind when considering a second opinion is that, having had a second opinion, you may feel more comfortable in the future if your treatment does not go as you would wish.

In contrast, if you’ve had more than one opinion recommending the same treatment, you may feel more comfortable that you chose the right options for treating your cancer. You won’t find yourself second guessing and wishing later on that you had gotten a second opinion.

When getting an opinion it is important to find a doctor in a different clinic. In other words, you don’t necessarily want to see another physician who is part of the same oncology practice. Many people choose to get a second opinion at one of the larger National Cancer Institute-designated cancer centers. In addition, some of these larger centers are more likely to be involved in conducting clinical trials studying the newest treatments.

Effective Communication

We know that an open line of communication between people with cancer and their healthcare team can make a big difference in both quality of life and a sense of empowerment over the care received. We also know that, just like relationships between any two people, communication between people with cancer and their physicians is subject to misunderstandings.

Here are a few tips for keeping the lines of communication open and reducing the opportunity for misunderstandings between you and your healthcare team.

  • Ask questions. Lots of questions. Don’t be afraid to ask the question again if you don’t understand the answer.
  • Take notes.
  • Ask for what you need. Some people find that they don’t want to “bother” their physician with some of their concerns. It’s almost always better to ask a question as soon as you have it rather than put it off for a later date.
  • Speak up if you feel there may be a misunderstanding. Most misunderstandings are much easier to resolve right away. If you find it difficult to speak up, ask a friend to speak for you. Don’t let miscommunication fester and become an even greater issue.
  • Be patient waiting. Always bring something to occupy you in the waiting room to make the time flow more easily and reduce your irritation. Most physicians don’t like to be behind and don’t like to let patients wait. If your physician is running behind, it’s likely that she had an emergency or that an earlier patient required more time than was scheduled. Keep in mind that next time it may be you that requires more than your allotted time. If you want a physician who is there for you when you need it and takes the time to answer all of your questions, that same physician is likely to get backed up at times.

Questions to Ask

In addition to the questions you might wish to ask about treatment, it’s important to know who is in charge of coordinating your care or who to call in an emergency. Hopefully, you won’t need to know the answers to these questions, but preparing ahead of time can reduce a lot of anxiety and worry if the need should arise.

  • Who is in charge of coordinating your care?
  • If you are taking part in a clinical trial, when should you call the clinical trial investigator and when should you call another member of your healthcare team?
  • Who should you call if you have any symptoms on weekends or after hours?
  • If you need emergency care, where should an ambulance take you?
  • What symptoms might suggest an emergency? This is a very good question to ask your oncologist as the answers will depend on your specific situation and the treatments which you are receiving. Some of the symptoms that indicate an emergency may not be obvious to you.
  • What types of emergencies may occur with a cancer like yours?

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