Your Cancer Support Team: Who’s on Your Side?
You cannot imagine how much you don’t know about the cancer world until you visit it. Your journey starts with three of the worst words you can ever hear “You have cancer.” Many people’s first reaction is, “Am I going to die?” It’s not unusual to go blank and not remember much after hearing those words. That is why we suggest you bring along a second set of ears. Bring your significant other, a family member, or your best friend to your appointments. You want notes on what kind of cancer you are facing and what stage it is. You also want to note any recommendations and contacts. Your “other set of ears” may also be prompted to ask some questions you would have asked were you not so stunned by the diagnosis.
So, where do you start? What do you do?
You are going into battle, and you need skilled, experienced people on your team. You want to choose the best people within your network. Why is this important? It’s because providers may bill separately from the facility and may not be in your network. Choosing the right people who are also in your network is critical to keeping your costs under control. Make sure you read our section on finance before scheduling any appointments.
Who will be on your team, and how do you choose the right people? The same people won’t be on your team for the whole journey. Instead, some team members will be on the team only while they perform a specific task. Other team members will be with you throughout your journey.
Make sure that you select the best for you when choosing a surgeon, radiologist, hospital, oncologist, etc. Do they explain things in a way that you understand them? Do they treat you like an individual, not the breast cancer in room 3? Do you feel in your mind and your gut that they want to be fighting on your side? Will they go to the wall for you? If not, ‘fire them’ and look for someone that you can trust with your life. Yes, you can fire them. You pay them, it is your life, and ultimately you are in charge.
Only when you know that you have put together the best team you can find will you have the confidence to fight the battle of your life.
To choose the right team, you need to do some serious information gathering. Also, you need to take charge. Although your surgeon or medical oncologist may become your medical team leader, you must still be in control. It is your health, your body, and your life at stake. Don’t take just the recommendation from a friend or neighbor. Research and make your own decision. Depending upon your location, you will need to decide if you are going to a facility that only focuses on cancer, a cancer center within a major medical center/hospital, or a general hospital in your area. You may have all your treatments at one location. On the other hand, you may have your surgery at the primary location and other therapies at local facilities. Your location, finances, and ability to travel may play a part in your decision.
The cancer centers and many medical centers have teams of oncology (cancer) surgeons, plastic surgeons, anesthesiologists, radiologists, lab technicians, and patient navigators. This is the best case as they will schedule and coordinate treatments and medication. The team meets and decides on the plan and discusses results and modifications to their strategy if necessary. In addition, many of these places have research teams and are in contact with groups in other facilities, such as drug companies. This connection allows them to consider their patients as possible candidates for clinical trials. Doctors also benefit from this team approach. Medical practitioners in training can participate or observe the process and gain years of insight in a short time. This helps future patients.
Not everyone lives near a major medical facility or a cancer center. In addition, not everyone has the money to travel to one of these facilities, but that doesn’t mean you can’t get quality care. Do your research. Many rural hospitals have agreements with cancer centers and major medical centers to share information and conduct virtual consultations or team meetings. Suppose your facility doesn’t have a team approach. In that case, it means you will have to be even more watchful to make sure your treatments are scheduled in the proper order and not overlapping. You will also have to make sure every provider is aware of your treatments and your medications. In addition, you need to check with your insurance company. The coverage may differ if your chemotherapy is administered in a doctor’s office or outpatient facility rather than a hospital.
Don’t let anyone force you to do anything until you fully understand what they are talking about and what will happen to you. If you don’t understand, ask more questions. Keep asking questions until you understand everything being discussed. You may ask the nurse for answers. They have more time and are comfortable answering questions in lay terms rather than medical terminology. Sometimes even the smartest women need a second set of ears to listen to the difficult news. As we suggested, bring someone with you who can sit in on the office visits (no drama queens allowed). Take notes, get the correct spelling of the type of breast cancer you have, and research it. Make sure that you are reading the information in books and on legitimate websites. There are no quick or magical cures for cancer. It would be nice but let’s get real here. Cancer is real, cancer is nasty, cancer is frightening, but cancer can be conquered.
Some women choose to get a second opinion to feel comfortable with their team and its plan. Some women get a second opinion to confirm and help them accept the truth of the first diagnosis. Requesting a second opinion should not insult your first doctor or team. Medical providers recommend not discussing the plan of the first medical team until the second team presents their plan. It will allow you to have an open mind and get a clear picture of each strategy and its associated therapies. Also, don’t allow anyone to rush you. Selecting a team is a critical part of your battle plan.
We also recommend not allowing your financial situation to be the only factor you consider while determining your team and its plan. Cancer centers and major hospitals/medical centers have financial consultants and social workers to help you make financial arrangements or connect with charities and other support organizations. You may be surprised at the number of resources available if you make your needs known.
Lesson: Take your time to gather information and select a team that is right for you. Get a second opinion or even a third if you are uncomfortable with the team or the plan. Take charge and remember, it is your health and your life at stake.
This blog is published with the permission of Peggie Sherry, co-author of Breast Cancer, Tips and Tricks from Two Survivors. To support their work, you can purchase a copy of their book here. Proceeds from the book sales support Faces of Courage a cancer patient support non-profit organization dedicated to providing, free of charge, programs emphasizing practical education; life coping strategies; and improved self-esteem; through non-threatening, engaging, and recreational outings and overnight camps.
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