Your Medical Team
You are about to begin a battle and you need the best army and generals you can possibly assemble.
While it may be easier to go to someone close to your house, is that the best doctor in the area? Now is not the time to stay in your comfort zone. Now is the time to fight a foe that doesn’t fight fair, is sneaky and ruthless.
You need the best doctor you can find.
If you have a large teaching hospital or even better, a cancer center near you, go there for at least an opinion on your case and your future care. If this location is far from you, get a protocol set up and work in conjunction with your local doctor. Many doctors do this.
A good doctor is not afraid of you getting a second opinion. In fact, they should welcome it. It is very important for you to get a second opinion because you want to make sure that nothing gets overlooked.
If this was a toenail fungus you were dealing with, any dermatologist would do. But this is your life. Accept only the best. If you are in a rural area, travel to the best cancer center nearest you to get the proper protocol and then work with your local doctor in conjunction with the doctor’s plan from the cancer center.
Your care does not stop at the oncologist. Please see the doctor list to help you assemble your team.
Who Does What
Primary Care Physician
Keep your primary care physician (PCP) in the loop of everything that is going on with you. Your primary doctor knows you the best, knows your history, the medications you are on and can keep things moving smoothly in this world of managed care. When getting tests done, and there is a form to fill out asking “which doctor do you want results sent to?” ALWAYS list your primary.
For many women, this is their primary care doctor. Your gynecologist must care for you throughout your treatment and well beyond. He will be the one who will be treating you with long-term follow-up care should you need hormonal therapy or a hysterectomy. And he will be the one keeping an eye on your ovaries because we have an increased risk of ovarian cancer once we are diagnosed with breast cancer. Many hormonal changes may occur within the next few years and you need a doctor sensitive to this. He should have an open and ongoing dialog with your primary care physician. Let them both be your advocates.
This is the doctor who has been charged with ridding your body of any stray cancer cell that was not removed during surgery. This is the person you will be relying on with your life. He will determine what is the best protocol for you. This includes chemotherapy and hormonal treatments that are targeted to stop cancer from growing. He will set up a schedule of treatments and, along with his staff of trained oncology professionals, will monitor your response to treatment as well as any adverse side effects you might experience. You must pick an oncologist based on the following:
Respect. Is he respected by other doctors?
Is he on top of the latest trials and drugs? Is he open to all ideas?
Does he respect YOU as a patient? If he is understanding, empathetic and takes the time to explain things, then he does.
Is he around your age? This is a life long relationship. Does he look like he is worn out and about to retire? Or does he look like he wants to be the one to find the cure for cancer and he wants you to be the first patient to be cured?
Some people believe that they can get the same level of care from a general surgeon as they can from a surgeon who specializes in breasts. They cannot. And, in fact, a recent study concluded that a woman has a better chance of cure by surgery alone (70%) if she has her surgery performed by an experienced breast surgeon.
These doctors know how to make incisions that do not affect the rest of the breast. They know techniques for making biopsy and lumpectomy sites less noticeable. You are much better off with someone who only operates on the breast.
If you opt to have reconstruction you will need a plastic surgeon who specializes in reconstructive surgery.
Not all “nip and tuck” surgeons do. The ideal is a plastic surgeon who has worked closely with your breast surgeon in the past. This is a team effort in the operating room and all the members of the team need to be able to work well together. In the case of a mastectomy with immediate reconstruction, it is your breast surgeon who removes the breast tissue and any lymph nodes that need to be removed for analysis. When he is satisfied that he has removed all breast tissue that is necessary, the plastic surgeon will then take over.
This is a separate doctor from the radiation oncologist who you will see later . This is the doctor who runs the screening tests such as Mammograms and Ultrasounds. Essentially, this doctor has the ability to find your cancer while it is still tiny. Apart from reading films, radiologists also perform biopsies in their offices under the guidance of mammogram or ultrasound technology. It is a very precise and intricate field.
Not the radiologist you saw to diagnose your cancer, this doctor treats your cancer after it has been found.
You will see this doctor before you begin radiation. You go to radiation treatments every day but you only see the radiation oncologist once a week, when he checks your skin and asks you how you are. The best way to know that you have found the right one is if he is recommended by more than one of your other doctors.
This is someone you will meet in the hospital or ambulatory care center. You often don't have a choice which doctor will be assigned to you. However, with breast cancer there usually are multiple surgeries involved. If you find a doctor you like, request that he be your anesthesiologist when you go in for pre-surgical testing before your surgery.
You will meet this doctor right before your surgeries. He is the doctor who gives drugs or gases that keep you unconscious and pain free during surgery.
Before you go into the hospital, make a list of previous surgeries and any reactions you had and bring it with you. You will be nervous the day of surgery and you may not remember everything while filling out your forms.
It’s important for you to take the time to mention to him any troubles or past reactions you have had to previous surgeries.
This doctor is responsible for you as a whole person during your surgery. He follows your breathing and temperature and really is your guardian throughout the procedure.
She works with your oncologist and has had special training in caring for cancer patients.
She is the one you will see the most. You can also call her with questions without having to call the doctor. If there is something that she thinks is important, then she can get you in to see the doctor right away.
Chemo nurses are angels in scrubs. You will never find more loving, tender, caring people on this earth than a chemo nurse. Quite a few are survivors too-- so they really do understand what you are feeling.
This is a traumatic experience. It may benefit you to see a psychologist or psychiatrist while going through treatment. You can discuss things with them that you can’t mention to your family, or don’t want to mention because you are afraid of frightening them or putting too much of a burden on them.
Talking things through can help you make better decisions, help you feel less alone, and best of all, help you with the fear.
You are making life altering decisions. Don’t just go with one person’s advice. For any of these doctors you have every right to obtain a second opinion. You need to feel as comfortable as possible with the choices you make.
Gather the information you received from your doctor and then find yourself another one. Present your case the exact same way you did to the first doctor. More likely than not you will hear the same thing from both doctors if they are both of the same caliber. And that gives you confidence in your choice and your treatment plan. It is a good thing to do.
Most people don’t bother because it is too overwhelming and they don’t want to insult the first doctor they saw because they think it seems like they are doubting him. You aren’t doubting him. And a good doctor will encourage a second opinion because he is confident and sure of the treatment protocol he wants you to have.
Warning Signs of a Bad Doctor
1. Talks to you only in the exam room while you are undressed
2. Never looks at you when you are speaking, but rather, writes furiously in your chart not listening to a word you say
3. Has not reviewed your case at all prior to your visit. You know this because while you are perched on the iron table in your paper dress waiting for him, you hear him leave the exam room of another patient, then he is standing outside your door and you hear him remove your chart from the little cubby on the front of your door, flip through a few pages for 30 seconds and then he comes in. THAT is not PREP. Either come in and open the chart and talk or review it before hand at your desk in a proper way.
4. Doesn’t wash his hands upon entering. He just left another exam room- do you really want him touching you?
5. Makes no eye contact, isn’t quite sure of your name and simply goes through the motions of an exam. Or worse, never touches you. Never lays hands on you but writes up five prescriptions anyway.
6. Acts as if we are all the same person- more like cars in a body shop than human. Once he opens the hood of a Chevy it is the same as a Ford.
7. Doesn’t let you speak, ask questions, or express your fears
8. Doesn’t seem to care that you have cancer. There is no empathy. He either tells you he can “cure you” or he says off hand “we’ll see if this works”
9. When you question him about wanting a test or a certain chemo he makes a face because you “read it on the internet”. He then proceeds to inform you that anything you read is wrong and he is the only one who is right.
10. Has the same routine with everyone, never thinks of you as an individual. You can tell from the way he is talking it is a rote speech he has delivered thousands of times. But he never puts YOU into the speech. You can tell your particular case is of no interest to him―he has done this thousands of times, he would like you to just be quiet and listen to what he has to say.
11. You express a fear about your hair falling out and he/she makes a joke and tells you to stop being vain.
12. Doesn’t take into account the quality of your life when he is lining up one harsh treatment after another.
13. If you ask him about a side effect he says it “goes with the territory”
14. Makes you wait―not just in the waiting room but even in the exam room where you are left there waiting and waiting. At least in the waiting room there were magazines to read! Once in a while, and if an apology is given then it is fine, but every time with no apology is unacceptable
15. Is unavailable for after hours emergencies. OR if you finally do get through to him, he insinuates that you “bothered” him for nothing
16. Won’t share your case and what he feels needs to be done with your other doctors.
17. Never calls you with test results.
18. Thinks you are overreacting and might need some kind of counseling, anti-depressant, tranquilizer, etc. or you have fibromyalgia―when if he took five minutes to put your mind at east you wouldn’t need anything.
19. Won’t let you bring your husband, brother, sister, or best friend in with you to discuss your case- all you are doing is taking up too much of his time.
How to Be A Better Patient
Your doctors and nurses should never assume that they have a real understanding of what you are actually going through. Unless they have been there themselves, it is impossible for them to really know. It must seem to them as if they do know because of how many patients they see, but seeing it and living it are very, very different. So it is up to you, as a patient and your own best advocate, to make sure that you are very clear about what you are feeling and experiencing. For example, anyone who has had chemo knows there is a difference between the heartburn you get from chemo and the steroids to the nausea you get from it. If you tell your doctor you have a bad tummy, he may give you more anti- nausea meds instead of a prescription antacid. So be clear: say what is wrong as specifically as possible.
If you are expressing fear of the future and the unknown and in return are told, "Don't worry your hair will grow back", tell your doctor that is not helpful and is actually a hurtful comment. Your doctor should be smart and sensitive enough to know the difference between someone who is afraid for their life and not just their appearance. Speak up! You want answers; you are having the fear, let them know what you want so they can help you.
A health care worker should be empathetic to your experiences, should acknowledge your fears and concerns as real, and offer help outside of their office.
Your doctor might suggest a therapist, or a support group, or a "cancer coach" who will get you through the things that cannot be dealt with adequately in his office. You should find ways of letting go of the built up fears and emotions and these outlets may help you enormously.
A support group can help with feelings of isolation and help you to share with others who are experiencing everything you are. But a word of caution: it can be a double edged sword. As helpful as a support group is, there will always be someone there who is sicker than you and who might not return. This can be extremely frightening, even though we know that all our cancers are different and everybody is not the same and does not end up the same way. When you are there sharing with someone who is no longer able to come to the meetings and you are newly diagnosed or in the throes of treatment, it can do more harm than good to imagine not winning this war. You need to know this before you join a group. If you can join a newbie group then that is the best thing. Avoid the groups that have all ranges of illness and all types of cancer. That is why online support groups - such as the No Surrender Survivor Forum, are the best choice of all. You read what you want to read, get help where you need it, turn off the computer when you don't want it and best of all, you can attend this type of support 24/7 in your pajamas.
Remember, your doctor is only human. You cannot expect every detail of your case to be remembered, even with a medical chart. It is up to you to make certain you have all your questions answered, and if you feel something is wrong, it is up to you to call it to your doctor’s attention.
Know your test results from the last set of tests you took. This way, when you are sitting across from your doctor and a question comes up regarding the results of your last bone scan, you will be able to report, right away that the test was clear. You just saved yourself the extra five minutes it would take for your doctor to wade through your chart to answer his own question.
Gone are the days where we handed everything over to our medical team. In today’s world of HMOs and timed office visits, an informed patient can save her own life.