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A Guide for Women who have been Recently
Diagnosed with Cancer of the Breast

Lawrence T. Geoghegan

4-Page Printable Booklet

When a woman first learns that she has breast cancer, it is usually such a shock that she finds it difficult to take in any more information. The idea for this booklet came from hundreds of women who had recently been diagnosed with breast cancer. They asked for written information that they could read and digest at home, that could give them a chance to think about what questions to ask when they return to see their physician.

We wrote this booklet to give you that chance, and hope it alleviates some of your anxiety.

Special thanks go to Dawn Metcalf, LICSW, for her wise and sensitive work on this project, and for writing the section on support services.

Thanks also to the members of MIT Medical's Cancer Support Group for invaluable suggestions, and to the many MIT Medical staff who reviewed this pamphlet: Marie J. Avelino, R.N., Bethany Block, M.D., Sarajane (Sally) Ciampa, Rochelle R. Friedman, M.D., Laureen Gray, R.N.,C.S., Annette Jacobs, William M. Kettyle, M.D., Annie S. Liau, M.D., Dawn C. Metcalf, L.I.C.S.W., Janice M. McDonough, R.N., C.S., Marla J. Notaro, R.T. (R) (M), Margaret S. Ross, M.D., William A. Ruth, M.D., Elaine L. Shiang, M.D., Dolores Vidal, R.N.,C.S., Arnold N. Weinberg, M.D., Lori Ann Wroble, M.D.

MIT Medical offers a multidisciplinary approach to care: the best possible medical treatment combined with sensitive emotional support.

Breast Cancer

Learning that you have cancer is frightening to everyone. But the diagnosis of breast cancer is in a category by itself in terms of the fear and anxiety it creates in the women it affects.

In this brochure we hope to dispel some of the myths about breast cancer, and to help women cope with the disease.

It is important to know that

. . . the diagnosis is in no way a death sentence,

. . . in most cases early diagnosis and treatment leads to normal life expectancy,

. . . breast preservation is the norm.

This brochure attempts to unravel the complexities of staging and treatment of the disease to allow women to make rational decisions about their care.

Discovering Breast Cancer

An abnormal mammogram, finding a new lump, or a nipple discharge can lead to discovery of breast cancer.

Diagnosis

Diagnosis is confirmed by removing tissue from the lump or the suspicious area seen on a mammogram. There are several methods available.

If there is a palpable lump (a lump that can be felt), the next step is usually a needle core biopsy. This technique may be possible even if the area is not palpable but is visible on ultrasound. A needle core biopsy avoids a formal operation since it can be performed by a radiologist in the x-ray area with a local anesthetic. Without a formal surgical procedure, the provider can establish the diagnosis, and the patient and provider can then discuss the treatment plan.

If the suspicious area can only be seen on a mammogram, the next step is usually needle localization and an open surgical biopsy. In this procedure the radiologist localizes (locates) the area with a thin marker needle guided by mammogram, so the surgeon can remove the marked area in question.

The area removed is so tiny that most women say this is not a very painful procedure. In fact, most women are given a prescription for a small amount of pain medication to take after the procedure, and most report that they don't need it all. The procedure does not deform the breast, although there may be some temporary black and blue discoloration. It usually takes 48-72 hours to get the result of the biopsy.

What's the difference?

Needle localization requires open surgical biopsy to remove the tissue, while a needle core biopsy actually takes multiple small samples of tissue for diagnosis, using ultrasound for guidance of the biopsy site.

Although both procedures establish the diagnosis of malignancy, needle localization and open biopsy may provide more initial information. In many cases, the cancer may be completely removed and its characteristics better defined than is possible with a needle core biopsy.

QUESTION: I have been told that I have breast cancer. What does that mean? Are all breast cancers the same?

ANSWER: For the purpose of discussion we will divide breast cancer into two types, invasive and noninvasive. Noninvasive cancers are also known as DCIS, or ductal carcinoma in situ.

Almost all breast cancers begin in the mammary ducts. When malignant (cancer) cells spread or invade breast tissue outside the ducts, we call this invasive cancer. The implication is that the malignant cells can not only invade surrounding breast tissue, but ultimately can also spread (metastasize) elsewhere in the body.

Non-invasive cancer (DCIS) has not spread beyond the mammary duct where it started. By definition, it also has not spread beyond the breast (metastasized). However, if not removed, DCIS does have the potential to become invasive. From a practical viewpoint, it should be treated as a very early form of invasive cancer.

These two types of breast cancer are treated differently, primarily because DCIS, by definition, has not spread to other parts of the body.

The biopsy usually tells which of the two types of cancer you have.

Treatment of Ductal carcinoma in situ

Ductal carcinoma in situ (DCIS) hasn’t invaded surrounding breast tissue. By definition it has remained in the duct where it started. Since it hasn't metastasized, axillary lymph node dissection or removal is not necessary.

Treatment is aimed at local control in the breast. Currently the treatment consists of wide local excision – surgical removal of the cancer – usually followed by radiation to the breast. This is because DCIS, if not treated adequately, has a high incidence of invasive local recurrences.

Radiation treatment, or radiotherapy, is performed by a radiotherapist, a physician who specializes in the use of radiation to treat disease. MIT Medical uses radiotherapists at Massachusetts General Hospital and at Mount Auburn Hospital.

Recent studies have suggested that some patients don’t require radiation. This depends on the size of the tumor, the cell type, and whether or not the surgeon was able to remove a small amount of normal breast tissue on all sides of the cancer tumor.

When the pathologist examines the tumor, if the tumor extends to the edge of what was removed, it implies that there is cancer left in the breast, which must be surgically removed before deciding on radiotherapy.

Treatment of Invasive Breast Cancer

Invasive breast cancer therapy is aimed at controlling the disease locally and systemically throughout the body.

Patients are often confused by this. It is important to understand that radiation is a local therapy – an alternative to mastectomy when preservation of the breast is preferred. Large, well-controlled studies have demonstrated that in patients with early cancers, lumpectomy and radiation have been proven to be as effective as mastectomy for local control.

Chemotherapy, by contrast, is treatment to the whole body, and is necessary when (and only when) there is the chance that the cancer has spread beyond the breast.

Staging

Breast cancers are classified by stage, based on size of the primary tumor, microscopic appearance, and evidence of local (lymph node) or distant (metastatic) spread. What treatment is best for each individual woman is determined by considering all these factors.

The stages range from 0 through IV, with many complex subcategories, and by itself the stage (classification) does not address many important issues, such as a patient's suitability for breast-conserving treatment or the risk of distant relapse with or without systemic therapy.

Your surgeon will discuss your own condition – and what your particular stage (classification) does and does not tell you – when you meet.

The physician’s goal is to make his or her very best recommendation for treatment based on the stage of the disease and the patient’s general medical condition. The stage is determined by removing the primary tumor (cancer), and microscopically examining a number of lymph glands from the axilla (underarm) on the same side as the cancer. Other less specific tests, such as bone scan and liver function tests, are also used to check overall body function and health.

QUESTION: Please explain the surgery involved in establishing the stage.

ANSWER: First let's talk about the term biopsy. In this case it means removing tissue from the breast for examination by the pathologist. A biopsy can be done with a needle by the radiologist or the surgeon without subjecting the patient to a formal surgical operation. This is called a needle core biopsy. It removes only a small amount of tissue from the suspected cancer. It is a convenient method of establishing the diagnosis, but the area in question must either be visible on ultrasound or palpable by the physician.

Another type of biopsy is open surgical biopsy, performed in the operating room under anesthesia. This technique is used to remove the entire area in question or when the area can’t be palpated or seen on ultrasound.

QUESTION: My doctor used the term axillary dissection. What does that mean?

ANSWER: Axillary dissection is the surgical removal of some of the lymph glands from the underarm, on the same side as the breast that has the malignancy. The procedure is done in conjunction with lumpectomy, or as part of a modified mastectomy, if that is the choice of the patient and caregivers.

Axillary dissection requires general anesthesia. Patients usually spend one or two nights at MGH or MIT Medical's Inpatient Service. Most patients report some discomfort from the surgery but are up and around and eating normally the morning after the operation. A small catheter drain is usually removed 24 to 48 hours after the surgery.

The operation is designed to remove an area that has definite anatomic boundaries and contains between 6 and 15 lymph glands – only a small portion of the total number of glands in the area. If mastectomy is chosen rather than breast preservation, axillary dissection is done as a part of the mastectomy operation.

QUESTION: What is sentinel node biopsy?

ANSWER: Sentinel node biopsy is an ongoing experimental technique of trying to identify the first (or "sentinel") lymph node, and making a diagnosis after removing just that one node. There are two techniques for identifying the sentinel node, and both techniques are usually used. One involves injecting a dye, and seeing which lymph node is the first to receive the dye. The other uses a radioactive injection, and following the trail of the injection by using a counter or wand.

Since this technique is still experimental, it is usually followed by removal of the typical 6-15 nodes.

Mastectomy or Breast Preservation?

In most cases women can choose breast preservation rather than mastectomy. The decision to preserve the breast requires that in addition to lumpectomy the patient must undergo postoperative radiation therapy, to reduce the possibility of another cancer.

Radiation therapy requires treatment visits five to seven days a week for five to six weeks, according to the recommendations of a radiotherapist.

QUESTION: Why choose mastectomy if breast preservation is as effective?

ANSWER: Some local breast cancers are too extensive to remove. This may be due to the actual dimensions of the tumor or because it is associated with a large component of DCIS (ductal carcinoma in situ), suggesting that the disease may be multifocal – arising in more than one location in the same breast.

Also, if the breast is small, disfiguration of the breast can sometimes be obvious after an adequate lumpectomy.

Some women, particularly older women, prefer avoiding the five to six weeks of radiation therapy, which requires daily trips to the hospital, or want to avoid the side effect of this type of treatment: fatigue, skin reddening, radiation exposure, etc. Others may worry that lumpectomy and radiation treatment is not as safe a choice as mastectomy, despite extensive research results to the contrary.

Systemic Therapy: Women with positive lymph nodes.

Chemotherapy, hormonal therapy or both?

The decision about systemic (whole body) therapy is based on whether cancer cells are found in the lymph nodes removed at axillary dissection or during a mastectomy. The lymph nodes act like "sieves" and in most cases are the first line of defense when a cancer tries to spread.

If lymph nodes are involved, systemic therapy is recommended.

QUESTION: What is an oncologist?

ANSWER: Oncologists are physicians who specialize in the study of tumors. Their primary role is recommending and administering systemic therapy. MIT Medical uses oncologists at MGH and at Mount Auburn Hospital.

Systemic Therapy: Women with negative lymph nodes.

In the past, women whose nodes were not involved (node negative) were usually given the option of not undergoing systemic therapy.

Today, however, we know that even women in the most favorable group, those with tumors less than two centimeters in size and negative axillary lymph nodes, still have a 10-20 percent chance of recurrence of their disease over the next 10 years. Unfortunately, there are not yet any accurate predictors of which patients will experience recurrence of cancer. This has led oncologists to be more aggressive in their recommendations to women in general and in particular to women with negative nodes.

QUESTION: I have heard the term E.R. positive. What does this mean?

ANSWER: E.R. stands for estrogen receptor. Tumors are routinely tested for these receptors. Tumors that are E.R. positive are more susceptible to hormonal therapy, such as tamoxifen. This is good news, because it means that the tumors are more receptive to treatment and have better prognoses.

QUESTION: What is the typical follow-up like?

ANSWER: Although follow-up is planned for each woman individually, this is a typical follow-up plan:

1. Mammogram once-a-year.

2. For the first two years, examination every three months by the surgeon, the radiotherapist and oncologist in rotation.

3. For the next three years, examination every six months by the surgeon, the radiotherapist and oncologist in rotation.

4. From that point on, yearly examinations by your surgeon for breast specific exams and your primary care physician for routine general exams.

Support Services

When faced with the diagnosis of breast cancer, most women feel they need two things: information and support. At MIT Medical we try to meet both these needs in a variety of ways. Your personal physician, surgeon, nurse practitioners, and mental health resource people work together as a team, sharing information to provide the highest standard of coordinated care.

Each woman may need different forms of support, so we provide a variety of support resources to choose from:

During treatment for a serious medical illness, a psychiatric consultation about depression and coping skills during treatment can often be helpful and reassuring to patients and families, who wonder if what they are experiencing is normal, and if enough is being done. We recommend that a woman consider a "consultation" appointment to make an initial contact and lay the groundwork for support during treatment.

We hope this information helps you understand how we evaluate, diagnose and treat breast cancer.

If you have further questions, ask your physician or nurse practitioner.

Send comments on this publication to:

MIT Medical Communications
77 Massachusetts Avenue, E23-495
Cambridge, MA 02139-4307
or e-mail
health@mit.edu

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