The First Steps after a Breast Cancer Diagnosis
- Stay calm (if you can). For most women, the reaction to a breast cancer diagnosis is understandably one of shock, concern, and even panic. But it’s important to try to find some way to feel hopeful and optimistic too. Cure rates for breast cancer have never been better. When breast cancer is detected early, survival rates can be higher than 90 percent, and in cases of DCIS, survival can be as high as 99 percent. If at all possible, try to remain calm. Working with doctors who instil this sense of calmness and confidence in your prognosis will help; right from the start, don’t choose any doctor who doesn’t make you feel this way, who does not explain next steps in a way that makes sense to you, or who does not allot you enough time to answer all of your questions. Finding some sense of calmness comes with many benefits—after all, no one finds it easy to make important decisions under extreme amounts of duress. As you move forward, a calmer state of mind will allow you to process information, think more clearly, and make better decisions for yourself about your care.
- Find the right team. Breast cancer care is multidisciplinary, which means that different doctors from different disciplines (surgery, medicine, radiation, plastic surgery, and others) may be involved in different –aspects of your care. And just to make it potentially more complicated, the number and types of different doctors and specialists that may be involved with your care will vary from person to person and from case to case. Not all women need to see all these different types of doctors. That’s why navigating your path through breast cancer can be particularly confusing and overwhelming, but with the right guidance it’s not. To start, it’s important to know that almost all treatment for breast cancer is sequential. For example, if it’s determined that you’ll need surgery, chemotherapy, and radiation, you’ll get these treatments one after the other, not at the same time, and therefore will have a sequence of different doctors running the show at different points in the course of your care. Who comes first? How do you make your way from one doctor to the next? you will learn about the order in which you will be likely to meet and interface with the members of your treatment team—including breast surgeon, plastic surgeon, medical oncologist, radiation oncologist, and others— because even at the outset, when you’ve just been diagnosed, you’ll want to assemble a team that you feel confident and comfortable with. I’ll explain how.
- Do everything you can to see doctors who specialise in breast cancer. When patients are taken care of by doctors that treat more cancer—known as high-volume breast surgeons —the results are better. In one study investigating breast surgery outcomes related to volume, only 7 percent of surgeons met the criteria for performing a “high volume” of breast surgery (more than fifty cases per year), and only 25 percent of patients had their surgery performed by a high-volume breast surgeon. The other 75 percent had surgery with a medium- to low-volume surgeon, many of whom performed fewer than two breast procedures per month. Here’s why that matters: those patients who went to high-volume breast surgeons were significantly more likely to be offered and receive the most advanced breast surgery options, and thus better treatment.It makes sense: the more experience someone has regularly performing a task—whether it’s a haircut, a business deal, or a particular type of surgery—the higher likelihood of a better result. Along these lines, some patients incorrectly assume that all surgeons have the same level of expertise- they don’t!
This is particularly true for breast cancer care today. With all the advances that have already been made, all the different treatment options out there, and more progress occurring each year, there is so much to know and so much to keep current on when it comes to breast cancer (you should see the stack of medical journals and publications on my nightstand). So if at all possible, avoid doctors who “dabble” in breast cancer care as part of their practice. The doctor who dabbles, treating only a few patients per month or even per year, may not have the up-to-date knowledge base to provide the best recommendations for treatment. For most doctors, high volume is usually achieved by becoming a breast specialist. A specialist is someone who, after receiving general training, goes on to get additional, advanced fellowship training in one specific area, or someone who chooses to focus his or her practice on one particular disease or organ system. So breast cancer care is best provided by specialists who have chosen to focus only on breast cancer in all its forms and all its treatments. See Benefits of Specialisation
With each member of the team, if at all possible, it’ll be key to find a specialist: someone who focuses primarily or completely on breast cancer within his or her particular field. So a breast radiologist spends most of his or her time looking at mammograms and all of the other imaging studies related to diagnosing breast cancer. A breast surgeon is a surgeon who devotesmost if not all of his or her practice to performing breastsurgery. Seeking out high- volume specialists is one way to stack the odds in your favour for getting the best breast cancer care.
- Along the way, make sure you choose doctors you feel you can work with to make decisions. When you are diagnosed with breast cancer, you will have many choices to make: Lumpectomy or mastectomy? Chemotherapy or no chemotherapy? What about additional treatments? And so many more. More than with any other disease type, decision making in breast cancer care is often both medical and personal. As I frequently tell patients, “I may be the expert in cancer, but you are the expert in you.” And because we’re talking about an area of a woman’s anatomy that is both extremely visible and very personal (and often an essential part of her sense of herself as woman), there’s a huge amount at stake. When you get the information you need provided by the right specialists, you can feel calm and optimistic, which in turn will maximize your chances of making the best decisions, for now and for your future.
- Know that it’s not an emergency situation. It’s hard not to imagine that cancer is growing and spreading by the minute, the hour, and the day, and most women and their families believe that when you are diagnosed with breast cancer, time is of the essence. It’s important to know that this is not how cancer works.The only forgiving thing about a diagnosis of breast cancer is that it usually does not constitute a medical emergency. Breast cancer is not like appendicitis or a bowel obstruction, where you need to act within hours or else risk dire consequences. While many patients have visions of the cancer running wild and spreading throughout the body even in the time it takes to read an article in your doctor’s waiting room, the fact is that even the most aggressive newly diagnosed cancer does not grow or spread in a day, a week, or even a month; it takes a much longer period of time. You may be surprised to learn that even a cancer that seems to have just “popped up out of nowhere” has grown over the course of months to years. With rare exceptions, a new breast cancer diagnosis is not a medical emergency, so it’s okay to take a deep breath and allow yourself some time to formulate a plan. Taking a week or two to consider your first steps and to arrange appointments with the right doctors in the best places, rather than taking the first appointment with whomever you can get, will not jeopardize a good outcome in any way. Don’t feel desperate to get in to see the first doctor who will give you an appointment; it is certainly safe to wait days or weeks to get to the right doctor.This does not mean you should delay treatment for too long. Once you’ve identified your plan of action, there’s really no reason to wait. All that said, waiting can prolong the psychological agony. Ideally, you want your surgery or treatment to begin within four to six weeks of diagnosis.
- Always, always, always remember that no two cases are the same. The only way to determine what’s right for you is to arm yourself with the facts, discuss them with a doctor you trust, and then listen to your own voice above all. With breast cancer, every case is different. And even two women who seem to have the same diagnosis may have cases that differ in subtle ways that make a big difference in treatment options or recommendations. Because of this, there is a limit to what one can learn about her disease from the internet, an article, or even a friend who seems to have “exactly the same thing.” I think it is safe to say that when it comes to breast cancer, one size does not fit all—it doesn’t even fit most. As one of my patients said to me relatively soon after her diagnosis, “If I hear one more person tell me what she would do if she were me, I am going to lose it! How does anyone know what they would do if they were in my situation? And even if they were in the same situation, they’re not me!” So in this book, you will learn how to get the facts that pertain to you and your case, which will enable and empower you to move ahead with your care.
- Focus on what matters and tune out the background noise. How do you do that when there is so much information out there? It’s unrealistic to expect to insulate yourself completely from the onslaught of information and advice headed your way, but you need strategies for how to maintain optimism and a positive outlook in the face of the storm. How do you do that? By learning to let some of the information roll off you, by differentiating fact from fiction, and by getting a preview of the many myths out there related to breast cancer, and understanding how to dispel them. And if you can succeed finding the right team, making sure your doctors are specialists, and having medical providers you’re comfortable with—the number of questions you need to research on your own should be reduced, and you will have reliable, trusted specialists in your corner to turn to with your concerns.
Putting Together Your Treatment Team – It Starts with the Breast Surgeon
Most women diagnosed with breast cancer assume that right off the bat they need to see an oncologist. Oncologists are the doctors who take care of patients with cancer, right? Correct, but we need to qualify what we mean by an oncologist. In fact, there are three types of oncologists: surgical, medical, and radiation. Breast cancer care is multidisciplinary. That means that different doctors from different disciplines of medicine (breast surgery, medicine, radiation, plastic and reconstructive surgery, and others) may be involved in different aspects of your care. And just to make it potentially more complicated, the number and types of different doctors and specialists that may be involved will vary from person to person and from case to case. Not all women need to see all these different types of doctors, and the order in which you see them may vary. Your particular case may require you to see a breast surgeon and then a medical oncologist, whereas your friend needed a medical oncologist, then a breast surgeon, and then a radiation oncologist.
Given that most aspects of breast cancer care are sequential, not simultaneous, each doctor will be the “team captain” for that portion of your care, passing the baton to the next caregiver at the appropriate point for the next part of your treatment. While navigating the path through breast cancer treatment may seem particularly confusing and overwhelming, it’s not. You just need to take the first step, and for most women newly diagnosed with breast cancer, the first step is to see the breast surgeon. Almost all women who are newly diagnosed with breast cancer will have surgery as part of their treatment. And if surgery is not the best first step in your particular case, your breast surgeon will tell you this, explain why, and help get you set up with a medical oncologist.
It’s worth spending some time thinking carefully about your choice of breast surgeon. See What to ConsiderA breast surgeon isn’t just the person you are going to trust with your operation. A good breast surgeon will provide you with the critical information that you need to make the right decisions. In addition, he or she will get you set up with the right specialists that you may need to see for other parts of your treatment. The breast surgeon acts as the “gatekeeper” to the whole multidisciplinary breast cancer treatment team. For example, a plastic surgeon may be needed to participate in your surgery, and your breast surgeon would help you arrange that consultation. And as mentioned above, there are other specialists you may need to see after surgery is done. Depending on your case, a medical or radiation oncologist may need to be consulted for decision making regarding additional treatment and your breast surgeon will help guide you toward the right specialists for those consultations as well.
Some women see a breast surgeon before they have been diagnosed with cancer, and this can be beneficial in many ways. Who is the right person? To start with, I highly recommend that you seek out a breast surgeon devoted to the treatment of breast cancer. It may be that you look for or are referred to a general surgeon out of convenience simply to “get a diagnosis.” My patient Melissa followed this course of action after she noticed a small knot in her upper right breast, near the armpit, about six months after her annual mammogram. The general surgeon who examined her—who had an office in the same building as Melissa’s gynaecologist, who recommended him—told her that he needed to take her to surgery to remove the lump right away, and that time was of the essence since it could be cancer. Melissa asked him whether it would be worthwhile to repeat the mammogram or conduct some other tests before rushing off to the operating room, but the surgeon said there was no reason for the mammogram to have changed, and that taking the lump out directly would be the best approach. Before she left the surgeon’s office, Melissa scheduled the surgery for a few days later, but by the time she got home, she was feeling very uneasy about moving forward. She called my office, and I assured her that she was absolutely right to be concerned. She did not need to rush off to surgery, and there were other tests we could do to determine what was going on before racing to remove anything. What had originally seemed like a convenient decision to see a general surgeon ended up costing Melissa more time and stress in the long run.
Yes, it’s true that general surgeons can perform breast surgery. In fact, breast surgery is taught as part of general surgery training, and so anyone who has been through a general surgery residency is qualified, at least on paper, to operate on a breast cancer patient. Up until the late 1970s and early 1980s, going to a general surgeon was the standard model of care for women with breast cancer. At that time, there was a limited amount that the surgeon needed to know about treating breast cancer, and only one operation: the radical mastectomy. No one spent any time or needed much specialized training to discuss the options, because there weren’t any options to discuss!
In the modern era of breast cancer care, however, there is a much larger range of options and issues, most of which are quite complex: lumpectomy versus mastectomy, for example, or mastectomy versus bilateral mastectomy. And that’s even before we get to choices around sentinel lymph node biopsy, the management of lymph nodes, the role of genetics, and MRI and other imaging. A general surgeon performing an appendicectomy on Monday, gall bladder surgery on Tuesday, and a breast cancer surgery on Wednesday cannot realistically be expected to have the knowledge base or expertise to guide you through all of the complex issues that are critical to making the right decisions for your care in the same way that a specialist working only on breast cancer cases every day of the week can.
Of course, patients may not have a wide variety of options when it comes to surgeons. Women who live in small towns or rural areas will most likely end up going to the one and only surgeon in their area who performs breast cancer surgery as part of his or her general surgical practice. If you don’t have a qualified breast cancer specialist near you, however, you might want to consider traveling, if you can. Sometimes this may be impossible financially or because of logistical limitations or insurance constraints; the operating surgeon may be a matter of assignment rather than choice, as is the case in the public hospital system. But if at all possible, your priority at this early stage should be getting to a place where you will get the highest level of care, and that will be with a specialised breast cancer surgeon. See Interstate/Overseas Patients
Choosing the right breast surgeon
If you are fortunate to have a choice of breast surgeons, you’re most likely going to look to family and friends or to your physician for guidance. If someone you know and trust has had a good experience with her breast surgeon, it is worth pursuing that as a starting point. But do keep in mind that most laypeople do not have the ability to truly assess the skills and judgment of a surgeon, much less to have an understanding of what actually goes on in the operating room. Your neighbour’s opinion of her breast surgeon is based mostly on subjective factors such as the breast surgeon’s personality, the convenient location of his or her office, and the service and efficiency of the office staff. It’s not that these factors aren’t important—it’s key to feel like you connect with the person who will be operating on you, and it could become important that you can get to the doctor’s office without a long drive—but these factors should also be weighed against more critical ones.
If you do have a choice, here are some questions to ask:
- Is the surgeon dedicated to breast surgery as the mainstay of his or her practice? There is just so much to know about breast cancer. And a huge part of being a breast surgery specialist is not just doing the actual operation, but rather the decision making that leads up to it. Thanks to research, each year brings more advances and improvements in the standard of care for breast cancer surgery and treatment. Keeping up with the latest for breast cancer alone is challenging enough, and a surgeon who has to do this as well as stay up to date on other types of diseases and their management may not be able to offer the same level of expertise and focus.
- How many breast operations does the surgeon perform each week, month, or year? There is clear-cut data demonstrating that surgeons and centres that do a high volume of specific types of surgery have better outcomes. This has been shown for various cancer types, including lung, prostate, and breast. It makes sense: a surgeon who performs more operations of the same type per month is better at the job than a surgeon who performs a range of surgeries in different categories, or only a few of one type. Usually with a breast specialist, high volume is a given. But finding someone who performs a high number of breast operations can be harder than it sounds. In New York State, data from as recently as 2002 show that approximately
75 percent of breast operations are performed by surgeons who do fewer than sixteen breast operations a year. It’s highly unlikely that a surgeon performing one to two breast operations a month can have the same level of expertise, experience, and knowledge regarding appropriate management as someone who performs several breast cancer operations a week (as I and many of my breast surgery colleagues do). So look for that high volume.
- Has the surgeon completed a breast cancer fellowship? Another way to identify excellence is to ask about your surgeon’s level of qualification. Did he/she obtain their medical degree from a top university? Was any post fellowship training undertaken at a prestigious institution? Did he/she prioritise their career to the extent that they were willing to relocate overseas for a period of time in order to pursue advanced training internationally? For well over a decade now, advanced training in breast surgery has been offered as a two year accredited fellowship. What this means is that surgeons who plan on devoting their careers to the treatment of patients with breast disease can spend an additional two years beyond general surgical training to focus on their area of interest. During this time, surgeons can gain an increased depth of understanding and learn the newest, most advanced techniques from the experts. There are top-notch fellowship positions all over the world devoted to training breast surgery specialists. A surgeon who has been through this type of fellowship is much more likely to have the knowledge base required to deliver the highest quality of care, and he or she has shown a commitment to breast surgery as a specialty. It’s therefore worth asking if your breast surgeon completed a two year breast surgery fellowship. See Questions to Ask
A WORD TO THE WISE
While friends and family can be a wonderful source of support and may be able to recommend good medical centres and doctors for your care, there’s always the danger that their input can become overwhelming. As you begin the process of diagnosis and treatment, my advice is to be wary of people offering unsolicited advice: the websites you must read, the long email threads with words of caution from friends of friends of friends, the phone calls, the texts. While there is no doubt that most people are doing this from a place of kindness, it would be hard for these friends or family members to provide any meaningful information about your care without having knowledge of the specific details of your case. So don’t let the onslaught of input upset your clarity and confuse your decision making during this crucial time.
The rest of the multidisciplinary team
Surgery is not the only aspect of your treatment, and so it follows that your breast surgeon is not the only person you will meet during your diagnosis and treatment. Your surgeon is part of a team, and the team is only as strong as its weakest link. You may have found a wonderful breast surgeon—someone who is kind and compassionate and who gave your friend the most beautiful incision in the world—but a surgeon cannot operate (literally or figuratively) in a vacuum. For example, in many cases, reconstruction is performed at the same time as the surgery for cancer, and thus a plastic surgeon will be involved. In such cases, the breast surgeon and plastic surgeon operate together, as a tag team: the breast surgeon goes first, and the plastic surgeon comes in afterward to reconstruct the removed breast. Because the breast and plastic surgeons must be able to work together, at the same facility or institution, usually the breast surgeon will refer you to a plastic surgeon with whom he or she works regularly.
In fact, the list of team members required for an excellent surgical result is quite extensive: anaesthetists are critical, operating room nurses and technicians prepare the right equipment and make sure it is well serviced, technicians process the pathology specimens, pathologists examine the tissue removed, secretaries schedule the procedure. Everyone must be part of an integrated, specialized team. See Multidisciplinary Breast Cancer Care
When this doesn’t happen, the quality of care may not be at its highest level. For example, if the breast surgeon performs a perfect operation but the pathologist does a less than perfect job examining the piece of tissue removed, then the surgeon’s ability to make the right decisions and recommendations regarding your care will be compromised. In certain situations it can be hard for a pathologist who doesn’t see a lot of breast cancer cases to distinguish between a cancer and something that is benign. Similarly, breast surgeons frequently depend on radiologists to localize an area before surgery so that it is easier to identify the tissue that needs to be removed. The surgeon’s ability to retrieve the correct area is dependent on the radiologist’s level of precision during the localization procedure. Excellent care may very well be available at the local hospital in your town, but if not, don’t feel that you have to settle. It will make a difference if you go elsewhere. As one of my former mentors used to say, “We may not cure everybody with good surgery, but we are not going to cure anybody without it.”
The other specialists who may be required for subsequent parts of your treatment include a medical oncologist, who prescribes drug treatments such as chemotherapy, anti-hormonal therapy and targeted therapies, and a radiation oncologist, who gives radiation when necessary. Again, not all women need to see all of these specialists, and your breast surgeon should be able to guide you through the ensuing steps and get you connected to the doctors you need to see. The most common sequence for seeing these specialists is breast surgeon first, medical oncologist second, and radiation oncologist third. Under some circumstances, your surgeon may want you to see a medical oncologist before surgery is performed, and chemotherapy may even be recommended prior to surgery. If this is a possible course of treatment, your breast surgeon and medical oncologist will work together with you to devise the best plan for your care.
Putting together your team: “all under one roof” versus “mix and match” from different places
You and your doctors should work together to make sure your care flows seamlessly from one phase to the next. One way to do this is to have your care in a specialised breast cancer centre, where all aspects of care are given under one roof. Doctors who work together regularly as a team in a high-volume centre, can often provide the highest level of care. Within a specialised unit breast surgeons can review their patients’ films side by side with radiologists to optimize plans for care. Patients who discover a new lump on a routine follow-up exam with one of their doctors can often be taken immediately to radiology, for further imaging and evaluation without delay. Doctors of all disciplines convene in regular multidisciplinary meetings, putting their heads together to come up with the best plan. From a practical standpoint, specialized units often enable doctors to arrange expeditious appointments for their patients with the other doctors, allowing patients to easily move through the system.
Many women, however, choose to mix and match, having different aspects of their care in different places. I have many patients who come from all over to New York City to have me perform their surgery but then prefer to stay closer to home for other parts of their care, which involve more frequent visits or treatment that would be inconvenient to travel for. You may find that after seeking different opinions you like one doctor at one medical centre for surgery but another for medical oncology. While this arrangement may require you to take more initiative in order to keep all your doctors on the same page and make sure records are transmitted back and forth, seamless care can still be easily accomplished with different doctors’ offices faxing and emailing, which is done all the time.
When a second opinion is needed
Sometimes it may be necessary to seek a second opinion. But they are not always necessary. Second opinions are an option but not an obligation. If the breast surgeon you have already seen meets all the requirements discussed above, there is really no reason you must get a second opinion. In my practice, I often see patients whose friends and family members are pushing for second opinions because they feel that “this is what you are supposed to do.” Although these friends and family members are well-meaning, their advice can sometimes be misguided.
That said, there’s no doubt that a second opinion can often be quite reassuring. Sometimes you are just so overwhelmed that hearing it all again from another doctor, in perhaps a slightly different way, is exactly what you need. Even if the second doctor says the same thing as the first, often it all seems to make more sense the second time around. I call this the “repetition factor.” It’s all so new, you may simply need to hear it more than once. And of course a second opinion becomes especially important if you harbour any doubts about the path you have chosen or the place you have chosen for your care. If your breast surgeon or facility does not meet the standards outlined above, then I would say a second opinion is probably an excellent idea. A good second opinion facility will ask you to bring in all the materials leading up to your diagnosis, including your breast x-rays and your pathology reports(which show the tissue that was removed at the time of biopsy). They’ll also take into account your personal and family history, and based on all these factors, you’ll receive a completely independent review, assessment, and recommendation. See Second Opinions
If you do decide to seek a second opinion, it’s important that you don’t sit in the second doctor’s office explaining in detail the first doctor’s recommendation. When I hear patients launching into a lengthy description of the other doctor’s plan, I usually cut them off, asking them to forgive my rudeness for interrupting. Then I explain that they are entitled to a completely unbiased second opinion and that this cannot happen if I first hear what the other doctor recommended. Once the patient has heard my recommendation, then we can talk about any discrepancies in the two opinions.
The first two opinions are different. Do you get a third opinion? Or a fourth? When should the information seeking end?
Sometimes when you reach the point of the third or fourth opinion, it becomes counterproductive to seek another opinion, only serving to delay decision making and getting the needed care. There are many women who understandably will never feel “ready” for surgery, but delaying treatment beyond more than a month or so can be detrimental. Most cases are straightforward enough that there shouldn’t be that much difference of opinion about the important aspects of treatment. So if you find yourself in this position, make sure at least one of the opinions is from a top-notch breast surgeon where you can have a high degree of confidence that the recommendations are reliable. Decide where you are most comfortable, and then move forward.
Getting the best care with limited financial resources and/or no health insurance
If you are already facing financial challenges, there’s no doubt that a breast cancer diagnosis can be particularly devastating. It’s hard enough managing your health needs without factoring in holding down a job or sometimes two, finding child care, and keeping up with your household responsibilities. For women in this situation, Irecommend that you try to go to a major public hospital breast unit. Many of these centres have clinics that provide access to extensive resources such as social workers and these ancillary services can be critical sources of information and support to you and your family before, during, and after treatment.
For women who do not have health insurance, there are still options for solid, good care. See Health Insurance.Most major city and regional pubic hospitals across the country have breast clinics where breast cancer specialists of all disciplines work. See Private vs Public. There may not be the same level of continuity of care as one would have with a private doctor, but receiving high-level care is still possible.
- Find a breast surgery specialist who treats a large volume of patients and is experienced and well trained.
- The breast surgeon is part of a team, and a good breast surgeon usually comes with a good team.
Adapted from “The New Generation Breast Cancer Book”, Elisa Port MD