Breast Cancer Questions to Ask the Doctor

I may have breast cancer. What questions should I ask my doctor?

If you have received a positive or possible diagnosis of breast cancer, there are a number of questions that you can ask your doctor. The answers you receive to these questions should give you a better understanding of your specific diagnosis and the corresponding treatment. It is usually helpful to write your questions down before you meet with your health care provider. This gives you the opportunity to ask all your questions in an organized fashion.

There is much information available online about breast cancer. The reader should make sure to look at reliable and nationally known resources and verify all information with their health care team.

Each question is followed by a brief explanation as to why that particular question is important. We will not attempt to answer these questions in detail here because each individual case is just that, individual. This outline is designed to provide a framework to help you and your family make certain that most of the important questions in breast cancer diagnosis and treatment have been addressed. As cancer treatments are constantly evolving, specific recommendations and treatments might change and you should always confer with your treatment team regarding any questions. You obviously should add your own questions and concerns to these when you have a discussion with your doctor.

Is the doctor sure I have breast cancer?

Certain types of cancer are relatively easy to identify by standard microscopic evaluation of the tissue. This is generally true for the most common types of breast cancer. This obviously implies that you have had a biopsy (removal of some tissue at the possible cancer site) that was then reviewed by a pathologist.

However, as the search for earlier and rarer forms of breast cancer progresses, it can be difficult to be certain that a particular group of cells is malignant (cancerous). At the same time, benign conditions may have cells that are somewhat distorted in appearance or pattern of growth (known as atypical cells or atypical hyperplasia). For this reason, it is important that the pathologist reading the slides of your breast biopsy be experienced in breast pathology. Most pathology groups have multiple pathologists review questionable or troublesome slides. In more difficult cases, the slides will often be sent to recognized specialists with considerable expertise in breast pathology.

What difference does a precise breast cancer diagnosis make?

The importance of an accurate diagnosis cannot be overstated. It is the precise diagnosis that determines the recommended treatment. Treatment must be specifically tailored to the specific type of breast cancer as well as to the individual patient.

A doctor should be able to give someone a clear description of the type of breast cancer along with the treatment options that are appropriate to one’s case.

What has been done to exclude cancer in other areas of the same breast or in my other breast?

Unfortunately, there are some patients who may have more than one area of malignancy in the same breast or even an additional malignancy in the other breast. If this does occur, it can greatly change the recommendations for treatment.

Therefore, it is critically important that your doctors carefully investigate beyond the immediate site of the tumor to make certain there are no other areas with possible malignancy.

Sometimes discovering these “secondary” areas requires careful review of your mammograms. It may also require the addition of special views from different angles and specialized examination of your breasts by ultrasound, MRI, or other imaging techniques. Sometimes imaging techniques will be used to evaluate the rest of your body, as well.

What type of medical team do I need for the most accurate breast cancer diagnosis and treatment?

A well-coordinated team, which includes input from multiple specialists, is the best way to diagnose and treat breast cancer. Oncologists are physicians who specialize in cancer care and will be involved in your care and will often coordinate your care with your primary care provider. Pathologists (physicians who diagnose tissue obtained during biopsies), radiologists, and surgeons will often be involved in the care, as well. Advice from the entire team must be available during biopsies and any tumor-clearing surgery to ensure the best chance of a favorable outcome for the patient.

How important is the role of the pathologist reading my slides?

The pathologist evaluating the slides made from fine-needle aspiration biopsies, core biopsies, and tissue slides of the breast must have a great deal of experience and special training. It is important that the pathologist reliably determine the presence or absence of cancer and distinguish cancer from other conditions such as hyperplasia with atypia (an overgrowth with unusual-looking but benign cells). The pathologist also orders and interprets special studies (see below) on your cancer tissue to determine the precise characteristics of the cancer cells, such as whether the cancer expresses hormone receptors. These results are used to further specify the type of breast cancer and optimize treatment decisions. The remainder of the treatment will be based on the pathologist’s diagnosis.

Have my slides been reviewed by more than one pathologist?

A review by more than one pathologist is optimal. There are many subtleties that can be overlooked when reviewing microscope slides. These can lead to both over-reading (making a false-positive diagnosis) and under-reading (making a false-negative diagnosis). When slides are read a second time by another pathologist followed by a discussion of the conclusions, most diagnostic problems are resolved. This is not a standard procedure at all hospitals.

There are almost always several pathologists available who can review the pathology of your slides (this is termed a “double reading”). The added safeguard of double reading may not be necessary in most cases of breast cancers but can be a critical factor in some cases.

Can I have my biopsy reviewed by a pathologist at another diagnostic center?

It should always be possible to send slides from your biopsy to a pathologist at another diagnostic center. First of all, there should not be a rush to treatment; breast cancer is almost never an emergency. Developing the best treatment plan depends on a good, thorough pathologic evaluation as well as a complete workup of both breasts, as noted above. You should discuss this with your treatment team or primary care giver as they can help you arrange for this.

Second, good pathologists are never offended by a request for an outside opinion. They also usually know the names of some of the finest breast pathologists in the country and should be willing to arrange a consultation with one of these doctors.

In most cases of breast cancer, it is not necessary to obtain this in-depth consultation. However, if there are any unusual aspects of your case, it can be important in your decision-making process. The matter of obtaining additional consults may take a week or more.

Is my family history relevant to my breast cancer diagnosis?

If you have a strong (positive) family history for breast cancer, ovarian cancer, or even prostate cancer, this information is relevant to your diagnosis. A strong family history in this case usually means that a mother, sibling, child, or father has had a related malignancy. Information about other family members (aunts, nieces, etc.) is also important. This is especially significant if the diagnosis of breast cancer was made at an early age or involved both breasts or a breast and an ovary in the same individual. A positive family history may necessitate a more comprehensive diagnostic workup, more involved treatment, and consideration of genetic testing, not only for you but for other family members.

What other studies should be done on my breast tissue biopsy?

Microscopic evaluation of the slides made from involved tissue provides critical information about the tumor. A reasonably accurate prediction of tumor behavior can be made based on the appearance of the cancer cells, their size and similarity to one another, and the presence or absence of these cells in the lymphatic and blood vessels immediately adjacent to the tumor. This type of evaluation is a standard part of the diagnostic process.

However, there are additional relevant data that the laboratory should obtain, and this analysis is directed by the pathologist at the time of diagnosis. This information includes, at a minimum, an assessment of the estrogen and progesterone receptors on the malignant cells and the status of at least one oncogene, called her-2-neu. An oncogene is a gene that plays a normal role in cell growth but, when altered, may contribute to abnormal cell division and tumor growth.

Currently, these tests (estrogen and progesterone receptors and her-2-neu) have an accurate enough predictive value that their status should be determined in all cases of breast cancer. Test results are available within a few days to a week after removal of the tumor tissue. The results of these tests should then be taken into account in the final decision-making about treatment. These tests are constantly evolving and changing, and your treatment team will be able to discuss the current standard and advanced testing available.

Genomic assays (tests that evaluate gene expression) in the tumor tissue are often performed on certain breast cancers to help determine the likelihood that a tumor will recur (come back) and to help determine whether chemotherapy will be beneficial.

How urgent is it that I make decisions and begin breast cancer treatment?

It is extremely rare that a patient must be rushed into treatment. The biology of breast tumors is established fairly early in their development, and by the time the tumors are detectable, most have been growing undetected for considerably more than a year. This means that if you take a few weeks to complete a thorough evaluation, obtain appropriate consultations, understand the situation, discuss the alternatives, and initiate a treatment plan, it is not likely to add any significant risk. This time frame, however, should allow the facts of your case to be carefully sorted out and errors to be minimized. Your treatment team should be able to help you in this process and specifically advise you on the urgency to start certain treatments.

Are there controversies in the recommended treatments among reputable experts?

Doctors may differ in their recommendations if they weigh the risks differently. There will always be uncertainties in any given case. These issues are rarely “right versus wrong.” They can be compared with decisions such as, “How do I balance my desire to have the largest and safest care with the need to have convenience and economy?” There are tradeoffs. For example, certain breast cancer treatment options may favor cosmetic appearance but slightly increase the risk of recurrence in the affected breast. If you have concerns, a second opinion by a different treatment team can often be helpful. A good treatment team will help the patient make informed decisions.

How might my treatment affect future risks and follow-up treatment?

There are often indirect consequences of treatment decisions. For example, breast-conservation therapy achieves, as its goal, treatment of the breast cancer along with preservation of the breast. This is clearly a highly desirable objective. However, in doing so, it leaves the possibility that cancer may recur in that breast. The risk is small but is definitely there. Most of the time, the recurrence will be recognized and the new tumor treated early but not always.

These risks mean that a patient choosing breast-conservation therapy must have the treated side (and the other breast as well) carefully monitored with regular examinations and imaging tests. Occasionally, tissue abnormalities develop that may suggest a new or recurrent cancer, thereby necessitating further evaluation with more tests or even another biopsy. The majority of these abnormalities turn out to be benign, perhaps caused by benign breast disease or changes from the surgery and radiation therapy. But the psychological impact of having to repeat such an evaluation may be very upsetting to some patients. Breast conservation is not appropriate for every breast cancer patient or breast cancer type.

There are similar considerations in each treatment plan that have to be understood and carefully evaluated before committing to a particular method of therapy. You should discuss these issues thoroughly with your doctor.

Should genetic testing be part of the treatment decision process?

The majority of breast cancers occur as unconnected (sporadic) cases and are not caused by an inherited genetic abnormality (mutation) passed from parent to child. However, if you have close family members, such as a mother or sister, who have had the disease, especially if it occurred at a young age, then the possibility of a genetic predisposition to develop cancer cells should be investigated. In these situations, genetic testing may provide valuable information. The test results may affect not only recommendations for your therapy but may also have major implications for other family members, as well. Gene testing should only be done after careful genetic counseling so that everyone has a thorough understanding of the potential value and also the limitations of these tests.

Should I stop taking hormone replacement therapy (HRT) after a breast cancer diagnosis?

Breast cells are programmed to respond to certain hormones as signals for growth and multiplication. The most prominent examples of these hormones are estrogens and progesterone. Many breast cancer cells retain hormone receptors (molecular configurations on the cell surface to which the hormones bind). The hormone receptors, therefore, make the cancer cells responsive to these particular hormones.

In general, taking hormones is not recommended if a diagnosis of breast cancer is under consideration. This does not necessarily mean that you can never resume postmenopausal hormone therapy. This issue is generally reconsidered after the completion of your evaluation and treatment. You should consult with your physician before you stop or start any new medications.

Even though my breast tumor does not have hormone receptors, should I take tamoxifen to reduce the risk of a new tumor?

Following completion of your treatment for breast cancer, whether or not tamoxifen (Nolvadex) is prescribed should at least be addressed. In many cases, the primary breast cancer for which the patient is being treated may not be hormone-receptor positive. In these cases, tamoxifen (which binds to the estrogen receptor in place of estrogen) is not generally part of the treatment protocol.

However, the Breast Cancer Prevention Trial (a study of the use of tamoxifen) demonstrated a significant reduction in the development of new cancers in the opposite breast in patients who were treated with tamoxifen. So, the possible use and benefits of tamoxifen should not be ignored. A thoughtful evaluation of all the factors in a particular case will lead to a recommendation which balances the benefits of tamoxifen against the potential risks. Your treatment team should address this issue with you.

I have a ductal carcinoma in situ (DCIS), a type of localized cancer. Why have I been advised to have a mastectomy when other women with invasive breast cancer have lumpectomies?

Ductal carcinoma in situ (DCIS) sometimes presents a difficult dilemma. Most patients with DCIS can undergo successful breast-conservation therapy but not all. The diagnosis implies that this is an “early” form of cancer in the sense that the cancer cells have not acquired the ability to penetrate normal tissue barriers or spread through the vascular or lymphatic channels to other sites of the body. It is important to realize that breast cancer is a wide spectrum of diseases, and no comparisons should be made just on the basis that someone you know has “breast cancer” and shares a different treatment approach with you.

However, the millions of cells forming the DCIS have accumulated a series of errors in their DNA programs that allow them to grow out of control. There are varying degrees of disturbance, called “grades,” of the normal cellular patterns. Low grades are usually more favorable, and high grades are less favorable.

The DCIS cells originate from the inside of the breast gland ducts (microscopic tubes). As they multiply, the cells fill and spread through the normal ducts of the breast glandular tissue. With many DNA errors already in place and millions of these cells exposed to the usual risks of additional DNA damage, a few cells will ultimately become invasive. This invasive change is the real risk of DCIS.

Treatment that does not physically remove all of the DCIS seems to leave some risk of recurrence and, therefore, invasive disease. In cases where the DCIS has spread extensively through the breast ducts, even though the disease is in a sense “early” because it is not yet invasive, it may still require a large surgical resection, at times even a mastectomy (removal of all or part of the breast).

Your treatment team should be able to discuss the pros and cons of the different approaches and actively include you in the decision process.

Should I start chemotherapy before surgery for breast cancer?

The classical concept of breast-cancer treatment has been a sequence of tumor-removing surgery followed by chemotherapy and/or radiation therapy. The goal of surgery and radiation therapy is to destroy or remove the primary cancer. Follow-up chemotherapy is designed to eliminate any cancer cells, as yet undetectable, at remote sites.

Recently, there have been new findings suggesting a potential benefit in some patients when chemotherapy is started before surgery. However, initial chemotherapy (neoadjuvant chemotherapy) should be considered primarily in patients with larger tumors and those with strong evidence of lymph-node involvement at the time of initial diagnosis.

If you are enrolled in a clinical trial, the advantages and disadvantages of all protocols should have been explained to you, giving you the opportunity to make an informed decision.

If I am advised to have a mastectomy, what are the risks and benefits of immediate breast reconstruction?

If a mastectomy is necessary, immediate reconstruction offers a great psychological benefit to most women. However, as is often the case in medicine, there are trade-off risks that must be considered. If the reconstruction is done during the same surgery as the mastectomy (immediate reconstruction), the final results of the pathology tests on the removed tumor and tissue is not yet known and will not be known for at least a day or two.

There are sometimes findings on the final pathology report that make chest wall radiation advisable in order to reduce the risk of local recurrence. If a prosthesis for the breast has been implanted, the radiation treatment will still work, but the radiation may significantly compromise the cosmetic appearance of the prosthesis. There may also be healing problems that delay chemotherapy, potentially increasing the risk of breast cancer recurrence. These and other factors should be discussed and carefully considered before committing to immediate breast reconstruction.

Should breast cancer patients have their lymph nodes removed?

Lymph nodes are small glandular structures that filter tissue fluids. They filter out and ultimately try to provide an immune response to particles and proteins that appear foreign to them. There are thousands of these nodes scattered in groups throughout the body. Each cluster is more or less responsible for the drainage of a particular region of the body.

The lymph nodes under the arm (axillary nodes) are the dominant drainage recipients from the breast. When cancer cells break free from a breast cancer, they may travel through the lymph tubes (vessels) to the lymph nodes. There, the cancer cells may establish a secondary growth site. The presence of cancer cells in the lymph nodes proves that cancer cells have traveled away from the primary breast tumor. Therefore, the presence or absence of cancer cells in these regional nodes is an important indicator of the future risk of recurrence. This information is often important in making decisions about whether to use chemotherapy and what type of chemotherapy should be employed.

Unfortunately, removal of the lymph nodes also carries a potential risk of lymphedema, a condition that may cause the arm to swell. Lymphedema can occur early after surgery or many years later. It can be a difficult and disabling condition. Here again, there are tradeoffs in risk. When more lymph nodes are removed, more accurate information about tumor spread is obtained and the chance for tumor recurrence is less. But there is a greater incidence of lymphedema.

There are alternatives to standard lymph node removal (called axillary node dissection). These alternatives should be considered in each patient’s situation. They include

1. replacing standard axillary-node removal with sentinel node biopsy (explained below);
2. not doing lymph-node removal in patients who will receive chemotherapy anyway based on other information; and
3. not doing lymph-node removal in patients with very small or “favorable” tumors.

Again, these alternatives must be selectively applied with the benefits and risks carefully evaluated.

What is a sentinel lymph node biopsy, and what are its benefits and risks?

A sentinel node biopsy takes advantage of a peculiar physiologic and anatomical finding. Although there may be many lymph nodes in a particular drainage region, it appears that only one or two are the first recipients of the regional fluids.

This means that if any nodes will be involved by tumor spread, the sentinel node will be the first. It also means in general that if the sentinel node is not involved, then no other nodes will be affected. Therefore, only the sentinel node needs to be removed. There are techniques for removing just the sentinel nodes. A sentinel node biopsy allows the pathologist to more intensively study this node and apply specialized techniques that are capable of detecting even a few cancer cells.