For most women, their primary care doctor, gynecologist, or breast radiologist has been spearheading their care and advising decision making up to this point. Once you are diagnosed with breast cancer, a different set of doctors will be needed to direct your care.
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 surgeon and then a medical oncologist, whereas your friend needed a medical oncologist, then a 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, or surgical oncologist. 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 (more on why this may be the case later), your 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 surgeon. A 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. 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 (see chapters 9 and 10 on additional treatments that might be needed), and often your surgeon will help guide you toward the right specialists for those consultations as well.
Some women actually see a breast surgeon before they have been diagnosed with cancer, and this can be beneficial in many ways. While it may seem like overkill to consult a breast surgery specialist when you have to have a lump removed or a biopsy done and don’t yet know if you have breast cancer, decision making regarding even the need for surgery and how it is performed can have a profound impact on your future care if a cancer is found, and it helps in terms of your confidence and continuity of care to know that you’ve started with the right person. Who is the right person? To start with, I highly recommend that you seek out a clinic or 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 gynecologist, 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 (for more on this, go to chapter 6). 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 (discussed elsewhere in the book). A general surgeon performing an appendectomy 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. 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 specialized breast cancer surgeon, known also as a breast surgical oncologist.
Choosing the right surgeon
If you are fortunate to have a choice of 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 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 neighbor’s opinion of her surgeon is based mostly on subjective factors such as the 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 the big three questions to ask:
1. 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 exciting 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.
2. How many breast operations does the surgeon perform each week, month, or year? There is clear-cut data demonstrating that surgeons and centers 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 ten or more operations a week (as I and many of my breast surgery colleagues do). So look for that high volume.
3. Has the surgeon completed a breast cancer fellowship? Another way to identify excellence is to ask about your surgeon’s level of qualification. For more than a decade now, advanced training in breast surgery has been offered as a one-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 year 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 country 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. So if your surgeon has been in practice for less than ten years, it’s worth asking if he or she did a breast surgery fellowship.
A WORD TO THE WISE
While friends and family can be a wonderful source of support and may be able to recommend good medical centers 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 surgery team
Surgery is not the only aspect of your treatment, and so it follows that your 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 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: anesthesiologists 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 correct procedure. Everyone must be part of an integrated, specialized team.
When this doesn’t happen, the quality of care may not be at its highest level. For example, if the surgeon performs a perfect operation but the hospital’s 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, 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 completely dependent on the radiologist’s level of precision during the localization procedure (for more on this, see chapter 6).
In the best-case scenario, you would be able to go to a major medical or cancer center where breast cancer is treated regularly and in substantial volume. Excellent care may very well be available at the local surgicenter in 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 chemotherapy treatments and medicine, and a radiation oncologist, who gives radiation when necessary. Again, not all women need to see all of these specialists, and your 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 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 (for more on chemotherapy before surgery, see chapter 9). If this is a possible course of treatment, your surgeon and medical oncologist should 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 specialized breast cancer center, where all aspects of care are given under one roof. Doctors who work together regularly as a team in a high-volume center, especially within a recognized medical center, can often provide the highest level of care. In the Dubin Breast Center at Mount Sinai Hospital, where I work, we have all of the specialists one might need for any aspect of breast cancer diagnosis or treatment working adjacent to each other and available within one facility. Within a specialized center such as this, 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 be taken immediately to radiology, down the hall, for further imaging and evaluation without delay. If any lab or imaging tests are done, all doctors have access to the results. And when difficult or complicated cases arise, doctors of all disciplines convene in “tumor board” meetings, putting their heads together to come up with the best plan. From a practical standpoint, specialized centers often enable doctors to arrange expeditious appointments for their patients with the other doctors, allowing patients to easily move through the system. In most major medical centers and their breast centers, doctors also share centralized electronic medical records, which means that you don’t have to worry about making sure information is transmitted from one doctor to the next, or about critical details slipping through the cracks.
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 center for surgery but another in a private practice office 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. Examples of when I think you should consider getting one have already been pointed out in previous chapters, and I will continue to point out other instances when getting a second opinion may be warranted. But they are not always necessary. Second opinions are an option but not an obligation. If the 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.
To give you an example: After a needle biopsy, Jill, a forty-three-year-old mother of two, learned she had two small cancers in separate areas of her right breast. I met with Jill to discuss the options, and we decided together that mastectomy—removing the whole breast with the cancer—was the best choice for her. With her husband and her closest friend at the appointment, we discussed the approach at length and proceeded to schedule surgery. A few days later Jill called to say she was receiving a lot of pressure from another friend to see a surgeon at a different hospital for a second opinion. This friend, Sarah, had had a double mastectomy with the same surgeon earlier in the year.
Jill and I had a long, frank discussion. I said I had absolutely no problem with her seeing another doctor for a second opinion, and Jill certainly had time to do so, as her scheduled surgery was approximately two weeks away. I also told her that I was completely confident that the plan we had chosen together was the right one and that there was no reason in her particular case to remove the other, healthy breast. Jill did go to see the other doctor, who made the same recommendation as I had, and ultimately we proceeded with surgery as planned. During one of our follow-up visits, Jill indicated to me that she felt as though her friend was strongly advocating for her to have a double mastectomy, as that was what had worked for her. But no two cancer cases are the same, and it’s important that you make your decision in collaboration with your surgeon and on your own terms.
That said, there’s no doubt that a second opinion can often be quite reassuring, as it was for Jill. Sometimes you are just so overwhelmed at the first appointment 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 harbor any doubts about the path you have chosen or the place you have chosen for your care. If your 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 radiology pictures and your pathology slides (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.
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 center where you can have a high degree of confidence that their 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 at all
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, I highly recommend that you try to go to a major medical center if you can. Many of these centers have clinics that provide access to extensive resources such as social workers, financial planners, and organized and free support groups. These ancillary services can be critical sources of information and support to you and your family before, during, and after treatment.
For the significant number of women who do not have any health insurance, there are still options for solid, good care. Most major city and county medical centers across the country have clinics where young breast cancer specialists of all disciplines are working. There will most likely 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.
THE TAKEAWAY
• Find a breast surgery specialist who treats a large volume of patients and is well trained.
• The surgeon is part of a team, and a good center usually comes with a good team.