Advice Please!

NickiDanny

Hello Everyone!

I was dx with breast cancer in 2012, had a mastectomy, went through chemo, Herceptin, etc. Last summer, developed problems with ovaries and had a total hysterectomy - fortunately, no cancer there. I'm frustrated today though. I want to make sure I am receiving the best follow up care possible and my question is - who follows you when you are "cancer free" after breast cancer? My gyno-onco advised a breast specialist, but didn't feel comfortable making the recommendations. Told me to ask my medical onco (who has never completed a breast exam on me at all)- who referred to my breast surgeon who pretty much told me after my last follow up visit that I wouldn't need to come back regarding my surgery. Through my own reading now, I understand I should probably be having a mammography/mri every six months. I've been getting my mammography, but scheduling it on my own...I guess my question is- Who, besides me, should be following me now? What type of doctor? A breast specialist? I've been calling around in my area - seems like they are surgeons, are part of a diagnostic center but no real follow care unless you are currently diagnosed. I still have more calling to do. I feel like I'm getting the run around or am simply not understanding after all this time. Anyone have any advice?

WinningSoFar

My breast surgeon told me that I would be seeing him for the rest of my life. If you live in the San Francisco area, private mail me and I'll give you his name. I'm sorry that the cancer 'team' approach doesn't extend to long term followup care but it appears it doesn't. I was first diagnosed in 1999 and quit seeing a cancer specialist and I made some pretty dumb decisions on my own. My surgeon in 2011 said 'the medical establishment has failed you'.

mkkjd60

After my mom had bc, she visited her bs once a year and her onco once a year. It was during a routine yearly onco visit when they took markers that it was discovered her cancer had returned. I wouldn't settle for the sad oversight they are laying out for you.

NickiDanny

Thank you both for replying and please forgive my late return - my Mother had a heart attack and I had to fly home. Fortunately, she is recuperating at home now and is expected to make a good recovery with some lifestyle changes, of course...

I called my BS office on Friday and fortunately, he was able to see me, completed an exam, checked what I deemed to be a suspicious area and now I am waiting for an US to be scheduled. He advised his plan is to see me every six months - so maybe I misunderstood? I must have, I guess. Sometimes I swear Chemo Brain never left. I also had a concern about my mastectomy side - now that I'm not getting mammo's on that side, how do we make sure there's no recurrence? He stated just a clinical exam in the office. Now I know I heard that right - I wrote it down. I'm not comfortable with that, however - so I think I will be looking for another BS. That wasn't the answer I was looking for. How would an office clinical exam find something in the chest wall? Not that something would be, but I don't want just the minimally acceptable.

I have this crazy anxiety again, like I did at the start of this. I am always examining myself - it has become so bad that I have to check myself in public; I almost can't help myself. Anyone else doing that?

WinningSoFar, thank you so much for the referral offer, but I'm on the East Coast.

Thanks for letting me vent!

Lotusconnie

NickiDanny,

I think to see a breast surgeon alternating with a medical oncologist who focuses on breast cancer is a good plan for follow up. To have MRI alternating with mammogram every 6 month is a good plan for imaging screening.

For your question about how to follow up the side of mastectomy, I think the MRI with IV contrast will be a good way to follow up, since you will only have mammogram on the other side. Self-exam and bring it up to your doctor from time to time, so that an ultrasound or additional MRI could be done, is a second-line defense. I do not believe in doctor's clinical exam. But do find a medical oncologist who does breast exam on you. That is odd that yours did not do that.

I hope my answers could be of use.

Anonymous

I had a bilateral mastectomy in 2010 and only have physical exams by my primary doctor and MO once (each) a year now. I asked about an MRI...but insurance will not pay for one without symptoms. I can get one every two years to check on the implants only. It doesn't entail the IV contrast so wouldn't deduct cancer...unless it was something very large and obvious. My MO doesn't do tumor markers either for my stage (1). I actually stopped seeing my BS on my own at year two because all she was doing was feeling me up. With my high deductible, I didn't feel it was worth it to see 3 people each year if all they were doing was a physical check. I do check them myself too. I'm assuming at some point I will stop seeing my MO?

I'm not sure what stage you are, but doctors/insurance companies tend to go with the statistics and if you are at a low risk for recurrence...then it doesn't justify the cost to them to fork out for an expensive MRI every year. Not saying that it is right...just that it is the reality of the situation. I'm sorry you are having such high anxiety. I hope you are able to find comfort somehow and feel less anxious about recurrence. You are still only a couple years out. The BC cloud has dissapated for me as the years have gone by...I hope it will for you too.

Lotusconnie

I did not realize that MRI is not approved for follow up after diagnosis and treatment. Sorry. Hope someone else has some input. How do you follow up after mastectomy?

Lotusconnie

Approach to the patient following treatment for breast cancer.

Authors
Kathryn J Ruddy, MD, MPH
Ann H Partridge, MD, MPH
Section Editors
Larissa Nekhlyudov, MD, MPH
Daniel F Hayes, MD
Deputy Editor
Don S Dizon, MD, FACP

Disclosures: Kathryn J Ruddy, MD, MPH Nothing to disclose. Ann H Partridge, MD, MPH Nothing to disclose. Larissa Nekhlyudov, MD, MPH Nothing to disclose. Daniel F Hayes, MD Clinical Research Support: Janssen [Circulating Tumor Cell (Circulating Tumor Cell Kit)], Breast cancer (abiraterone)]. Patent Holder: Circulating tumor cells (Circulating Tumor Cell Kit). Equity Ownership/Stock Options: Inbiomotion; OncImmune. Don S Dizon, MD, FACP Employee of UpToDate, Inc.

Contributor disclosures are reviewed for conflicts of interest by the editorial group. When found, these are addressed by vetting through a multi-level review process, and through requirements for references to be provided to support the content. Appropriately referenced content is required of all authors and must conform to UpToDate standards of evidence.
Conflict of interest policy
All topics are updated as new evidence becomes available and our peer review process is complete.
Literature review current through: Jan 2015. | This topic last updated: Jun 15, 2014.

INTRODUCTION — According to statistics from the International Agency for Research on Cancer (IARC), there are approximately 29 million cancer survivors worldwide as of 2008 [1]. In the United States, there are an estimated 14 million cancer survivors as of 2014, a figure that is expected to increase to approximately 18 million in the next 10 years [2]. Over three million women have a history of breast cancer, which constitutes 41 percent of the population of female cancer survivors [2]. Although the vast majority of breast cancer survivors are women, approximately 2000 men are diagnosed with breast cancer annually in the United States alone, and most will achieve long-term disease-free survival [3]. (See "Breast cancer in men".)

Patients who are living for decades beyond cancer experience the normal issues of aging, which are often compounded by the long-term effects of having had cancer and cancer therapy. These patients are at risk for a breast cancer recurrence (which is most common in the first five years but may occur even decades following treatment), a new primary breast cancer, other cancers, and short-term and long-term adverse effects of treatment. Additional issues for cancer survivors relate to psychological, genetic, reproductive, social, and employment concerns.

Unfortunately, there is a lack of clear evidence for what constitutes best practices in caring for patients with a history of cancer, and this contributes to wide variation in care [4]. Recommendations for posttreatment surveillance after primary therapy of breast cancer will be reviewed here. A detailed discussion of the patterns of relapse (ie, locoregional recurrence, second primary breast tumor, metastatic disease) and long-term complications of breast cancer therapy are presented separately. (See "Patterns of relapse and long-term complications of therapy in breast cancer survivors".)

A general overview of cancer survivorship is covered separately. (See "Overview of cancer survivorship care for primary care and oncology providers".)

DEFINING A CANCER SURVIVOR — There are many definitions and phases of cancer survivorship. We define a cancer survivor as any person with cancer, starting from the moment of diagnosis. This is consistent with definitions from the National Coalition for Cancer Survivorship [5] and the National Cancer Institute [6].

This overview addresses breast cancer survivors who have completed initial treatment for breast cancer (ie, surgery, chemotherapy and/or radiation therapy) and who are without evidence of disease.

GUIDELINES FOR POSTTREATMENT FOLLOW-UP — Guidelines from American Society of Clinical Oncology (ASCO) suggest that patients with early stage breast cancer (tumor <5 cm and fewer than four positive nodes) may follow up exclusively with a primary care provider (PCP); for patients and clinicians who agree with this plan, care may be transferred approximately one year after diagnosis [7]. In such cases, both the patient and the PCP should be advised of the appropriate follow-up and management strategy. Data are sparse to inform optimal follow-up of male breast cancer survivors; recommendations for women are usually applied to men, with modification as appropriate. Additional guidelines for posttreatment follow-up were made by the Institute of Medicine; these are discussed separately. (See "Overview of cancer survivorship care for primary care and oncology providers", section on 'Guidelines for posttreatment follow-up'.)

For patients receiving adjuvant hormonal therapy, informed decisions regarding long-term options may necessitate periodic referral for oncology assessment since treatment strategies are evolving over time. Furthermore, input from an oncology specialist is warranted if there is suspicion or evidence of disease recurrence, or if questions arise regarding the safety of certain interventions (eg, vaginal estrogen in a patient who has severe atrophic vaginitis).

Breast cancer survivors should receive ongoing age-appropriate screening studies and preventive care, consistent with recommendations for the general population, for conditions other than those related to breast cancer and its treatment. (See "Preventive care in adults: Recommendations".)

COMPONENTS OF FOLLOW-UP

History and physical examination — History and physical examination have been the principal means of detecting a breast cancer recurrence [8-10]. We suggest that patients be seen every three to six months during the first three years after primary therapy, every 6 to 12 months for the next two years, and then annually (table 1), consistent with American Society of Clinical Oncology (ASCO) 2012 guidelines [7]. However, this schedule is arbitrary; no studies have evaluated the benefit of less frequent clinical visits in patients with low-risk disease or more frequent visits in those with higher-risk disease [11].

History — In addition to the general components of a medical history, the breast cancer survivor should be screened for symptoms of local recurrence as well as metastatic disease. Any changes in the family history should be obtained, which may be important to discussions regarding genetic counseling. (See 'Genetic counseling' below.)

The history should include any interval changes in the patient’s social environment (including partner status, life events, living arrangements, and occupational issues) that may have arisen since the end of treatment.

A review of systems should not only screen for metastatic disease but also may identify issues related to prior treatment. We suggest that the review of systems include the following [12,13]:

●Constitutional symptoms – Anorexia, weight loss, malaise, fatigue, insomnia.

●Bone health – Presence of pain and its characteristics (ie, location, character of pain [dull or aching], chronic or intermittent, associated symptoms, exacerbating factors and what provides relief).

●Pulmonary symptoms – Persistent cough or dyspnea (at rest or with exertion).

●Neurologic symptoms – Headache, nausea, vomiting, confusion, weakness, numbness or tingling.

●Gastrointestinal symptoms – Right upper quadrant pain, change in bowel habits, presence of bloody or tarry stools.

●Genitourinary symptoms – Vaginal bleeding, pelvic pain, difficulty urinating.

●Psychologic symptoms – Depression, anxiety. 

●Reproductive/Endocrine symptoms – Hot flashes, dyspareunia, vaginal dryness, sexual dysfunction, fertility concerns (in women with intact ovarian function)

Physical examination — We suggest that a complete physical examination be performed at each visit, which is consistent with ASCO guidelines [7]. At a minimum, the examination should include [12,13]:

●Examination of the breast, chest wall, and axilla – Thorough examination should be performed of the affected breast (if preserved) or chest wall, the contralateral side, the bilateral axillary regions, and the supraclavicular fossas. For those patients who underwent breast conserving treatment, providers should be comfortable examining the previously irradiated breast.

The breast examination in patients who underwent adjuvant RT may not be helpful. In a review summarizing the results of seven randomized clinical trials, the sensitivity and specificity ranged from 29 to 74 percent and 17 to 30 percent, respectively [14]. (See "Patterns of relapse and long-term complications of therapy in breast cancer survivors".)

Diagrams of the affected breast, including postoperative and postradiotherapy changes, can be helpful in documenting and following the examination over time.

Evidence of local recurrence includes newly discovered lumps (on the skin, within the breast or the nodal regions). Other worrisome findings may include skin changes in the breast (table 2). For women who have undergone mastectomy with or without breast reconstruction, the incision site and surrounding skin of the chest wall should be examined visually and palpated for abnormalities.

●Musculoskeletal examination – If lymphedema is suspected, examination of the arms should include circumferential measurement of the upper extremities bilaterally. (See "Clinical manifestations and diagnosis of lymphedema".).

In addition, palpation of the spine, sternum, ribs, and pelvis for bone tenderness should be routinely performed.

●Lung examination – Evaluation for breath sounds and percussion changes.

●Abdominal examination – Evaluation for right upper quadrant tenderness and/or organomegaly.

●Cardiac examination – Evaluation for of heart failure. (See "Evaluation of the patient with heart failure or cardiomyopathy", section on 'Physical examination'.)

●Neurologic examination – Evaluation of balance, gait, and sensory and motor function. (See "The detailed neurologic examination in adults".)

●Gynecologic examination – Regular gynecologic follow-up should be performed for women who have not undergone total hysterectomy (table 1) [7]. This is particularly important in women who are receiving tamoxifen because of the increased risk for endometrial tumors. (See "Managing the side effects of tamoxifen".)

Breast imaging

Mammography — Although the evidence is limited, surveillance mammography appears to be associated with a reduction in mortality among women of all ages [15-17]. This was illustrated best in a 2008 case-control study that compared mammographic utilization in women over 65 years who died or did not die of breast cancer and who lived at least 30 months following breast cancer diagnosis [16]. Women who had undergone a surveillance mammogram within one year were less likely to die of breast cancer (odds ratio [OR] 0.83, 95% CI 0.72-0.95). 

The purpose of posttreatment mammographic surveillance is to detect ipsilateral local recurrences after breast conserving therapy (BCT), which develops in up to four percent of women treated for early breast cancer [18]. In addition, mammography is performed as surveillance for a contralateral breast cancer. There is a lack of high-quality evidence to inform the optimal timing and survival benefit of mammographic surveillance for detecting ipsilateral recurrence or a contralateral breast cancer [15,19]. For women in long-term follow-up, mammographic surveillance should be obtained annually.

Local recurrence — There are no prospective trials that address the utility of mammography in the detection of local recurrence. Data from retrospective series suggest that mammography detects earlier lesions with a more favorable prognosis and that survival is improved in women whose lesions are detected mammographically as compared with those detected by other means [20-22]. However, other data suggest that mammographic screening in women with a personal history of breast cancer performs less well (lower sensitivity and slightly lower specificity) than in women without such a history [23]. In one study, women with a personal history of breast cancer had a higher rate of interval cancers compared with women without a history of breast cancer [23]. Fortunately, the majority of both screen-detected and interval cancers were early stage. (See "Management of locoregional recurrence of breast cancer after breast conserving therapy".)

Contralateral breast cancer — There are no randomized trials that address the role of mammography or its impact on survival in detecting contralateral breast cancers. However, recommendations for mammographic surveillance are based upon the benefits seen in the general population without a history of breast cancer. In general, breast cancer survivors are higher-risk women than the general population, and it would seem reasonable to infer that they derive as much or even more benefit from mammography of the contralateral breast. (See "Screening for breast cancer: Strategies and recommendations".)

There is indirect evidence from retrospective series that supports a beneficial impact for mammography of the contralateral breast [24-26]. One study compared outcomes among a cohort of breast cancer survivors in which both physical examination and mammography were performed for posttreatment follow-up versus a separate cohort of women who were followed only by physical examination [24]. Although the frequency of contralateral breast cancer was similar in both groups, more recurrences were node-negative in the women with utilization of routine mammography (75 versus 57 percent, respectively). Furthermore, the contralateral tumors were more often smaller than 10 mm or in situ (noninvasive) (35 versus 7 percent, respectively).

Breast MRI — Breast MRI is not routinely recommended for breast cancer survivors because of a lack of evidence to inform its role in this population. This was demonstrated in a 2012 systematic review that included 10 case series (n = 494) on the role of MRI in the detection of a recurrence [27]. The sensitivity and specificity of MRI to detect recurrent breast cancer was no better than for mammography historically. However, breast MRI can be useful for patients suspected of a breast cancer recurrence when mammography (with or without breast ultrasound) is inconclusive [28]. 

Breast MRI is indicated in the follow-up of women at high risk for recurrent disease based on a known BRCA-mutation or strongly positive family history. However, this practice is extrapolated from the indications for breast MRI as a screening tool in high risk women. (See "Management of hereditary breast and ovarian cancer syndrome patients with BRCA mutations", section on 'Breast MRI'.)

Ultrasound — Routine use of breast ultrasound as part of surveillance is not recommended. The addition of breast ultrasound (US) to screening mammography was evaluated in a trial in which 2809 women with an elevated risk for breast cancer who were undergoing routine screening mammography were randomly assigned to mammography alone or with breast US [29]. Compared with mammography alone, ultrasound plus mammography increased the diagnostic yield (from 8 to 12 per 1000 women, 95% CI 1.1 to 7.2) but also increased the rate of false positive results (4.4 versus 10.4 percent) and therefore lowered the positive predictive value.

Surveillance of reconstructed breasts — For women who have undergone mastectomy, surveillance is usually performed by physical examination. Routine mammographic imaging is technically limited in patients who have prosthetic implants and is generally not advocated. However, mammography is technically feasible following autogenous myocutaneous flap reconstruction, particularly following TRAM (transverse rectus abdominis musculocutaneous) or perforator flap reconstruction, because abdominal adipose tissue forms the bulk of the reconstructed breast [30]. Although the available data are sparse, and there is no consensus on this issue, some institutions image TRAM-reconstructed breasts using mammography since even after mastectomy, some normal tissue may be left on the chest wall from which a new breast cancer may on occasion arise. (See "Breast reconstruction: Preoperative assessment" and "Management of locoregional recurrence of breast cancer after mastectomy", section on 'Findings on imaging'.)

The only place where cancer can occur is either right below the skin in the subcutaneous tissue or just over the pectoralis muscle. Physical examination remains the cornerstone of detection of recurrent breast cancer after reconstruction, and other modalities such as MRI should be used only as adjuncts to clarify any physical findings. (See "Breast reconstruction: Preoperative assessment", section on 'Posttreatment surveillance of the reconstructed breast'.)

Discontinuing breast imaging — Continued screening mammography is warranted for older survivors with reasonable functional status and life expectancy [31]. The available data suggest that surveillance mammography reduces the risk of death from breast cancer, even among older women [15,16].

One prospective study evaluated over 1800 women 65 years and older with stage I and II breast cancer and reported that each additional mammogram was associated with a significant reduction in the risk of dying from breast cancer (odds ratio 0.69, 95% CI 0.52-0.92) [15]. A similar conclusion was reached in a study from the Surveillance, Epidemiology and End Results (SEER)-Medicare database [16]. 

Evaluation of bone density — Women with a history of breast cancer may be at increased risk of osteoporosis as a result of prior cancer treatment. Therefore, ASCO guidelines include performing a baseline screening evaluation (typically with dual energy x-ray absorptiometry) in the following patients [32]:

●Women over age 65 years

●Women ages 60 to 64 years in the presence of any of the following: a family history of osteoporosis, body weight <70 kg, a history of a non-traumatic fracture, or other risk factors for osteoporosis (eg, smoking, a sedentary lifestyle, alcohol use)

●Postmenopausal women taking an aromatase inhibitor (AI), including those in whom an AI has been recommended but not yet initiated

●Premenopausal women who develop treatment-related premature menopause

It is not clear what role vitamin D supplementation should play in women treated for breast cancer, nor whether or not levels should be checked routinely. In the absence of prospective data to inform the benefits specifically in these patients, the assessment of vitamin D levels and the role of vitamin D supplementation for women with low vitamin D levels should follow similar guidance as for women without a prior history of breast cancer. (See "Vitamin D deficiency in adults: Definition, clinical manifestations, and treatment" and "Calcium and vitamin D supplementation in osteoporosis".)

Further discussion related to bone health, including the screening, treatment, and surveillance of osteoporosis, for women treated for breast cancer is discussed separately. (See "Screening for osteoporosis" and "Overview of the use of osteoclast inhibitors in early breast cancer" and "Evaluation and management of aromatase inhibitor-induced bone loss".)

Genetic counseling — Breast cancer survivors who have not already pursued genetic testing may be appropriate candidates for testing. BRCA testing is an especially important consideration for men, and for women diagnosed under the age of 40, or with Ashkenazi heritage, and/or a strong family history of breast or ovarian cancer [31]. Prior to testing, it is important that patients be counseled about the potential ramifications of test results for themselves and their families, both medically and psychosocially. (See "Genetic testing for hereditary breast and ovarian cancer syndrome" and "Breast cancer in men".)

Other rarer genetic syndromes that predispose to breast cancer and for which testing can be performed, depending on family and personal history of a variety of cancers, include Li Fraumeni and Cowden syndromes. A genetic counselor can help to discern whether such testing might be in order. (See "Li-Fraumeni syndrome" and "PTEN hamartoma tumor syndrome, including Cowden syndrome".)

Genetic testing of the breast cancer survivor is important, particularly in order to facilitate testing in other family members. Once a particular mutation has been identified, testing other family members is technically straightforward. While it is possible to begin the genetic testing process in an unaffected individual, there is a greater chance that these results will be inconclusive. Therefore, the breast cancer survivor should be tested, particularly if her own children and first-degree relatives are also interested in their personal genetic susceptibility. (See "Genetic counseling and testing", section on 'Practical issues in genetic testing'.)

Role of laboratory evaluation and other imaging — Intensive laboratory and/or radiologic surveillance is not indicated for asymptomatic breast cancer survivors. This was demonstrated in a 2005 meta-analysis of two randomized trials that compared routine follow-up (regular physical examination and mammography) versus intensive surveillance (including radiological and laboratory testing) [33]. There was no difference between groups in overall survival (hazard ratio [HR] 0.96, 95% CI 0.80-1.15) or disease-free survival (HR 0.84, 95% CI 0.71-1.00).

Early diagnosis of metastatic disease, based on imaging alone and prior to onset of clinical signs or symptoms, may result in earlier intervention, with associated toxicities, but does not improve survival. Although a small percentage of patients with limited metastatic disease (eg, isolated pulmonary or liver metastases) may be treated with a multimodality approach, whether such patients are best identified by intensive posttreatment surveillance is unknown. Furthermore, laboratory and imaging tests used for surveillance have significant false positive and false negative rates. The unnecessary additional testing generated by a false positive result and the misleading reassurance generated by a false negative test can adversely affect the breast cancer survivor.

Therefore, we recommend against performing the following tests in asymptomatic women including (table 1) [7]:

●Liver function tests – Routine liver function tests are falsely elevated in up to 80 percent of women without liver metastases [34-36]. 

●Serum tumor markers – A number of serum markers are available that can detect early breast cancer recurrence, including CA 15-3, CEA (carcinoembryonic antigen), and CA 27.29 [37-40]. These biochemical markers of breast cancer increase in conjunction with advancing primary disease stage and reflect the total body burden of disease (table 3) [41-44]. However, they are neither sensitive nor specific for breast cancer relapse [40,41]. Therefore, measurement of serum tumor markers should only be used to monitor treatment response of patients with metastatic breast cancer, in the absence of readily measurable advanced disease [45].

●Chest imaging – Neither chest X-rays nor computed tomography (CT) is recommended to screen for lung metastases in the asymptomatic patient [46-48]. In one series of 416 patients who were undergoing surveillance with routine chest imaging after completing primary treatment for breast cancer, only nine patients had isolated pulmonary metastases. [49].

●Bone scan and serum alkaline phosphatase – There is no evidence that early detection of bone metastases changes the clinical course of the disease. Metastases to bone are almost always diagnosed by symptoms, even when patients undergo routine surveillance with bone scans [50-53]. Bone scans have an estimated sensitivity and specificity for detecting bone metastases of approximately 86 and 81 percent, respectively [54].

Alkaline phosphatase is neither sensitive nor specific for bone metastases. In a series of 1601 patients with node-positive breast cancer, alkaline phosphatase was only elevated in one-half of those patients who had known skeletal metastases, while the test was abnormal in 28 percent of those without bone metastases [53].

●Abdominopelvic imaging – Neither liver ultrasound nor abdominopelvic CT scans is recommended as a routine component of posttreatment surveillance [55-57]. In one large series of over 2400 patients that included 6628 pelvic CT scans performed over a nine-year period, pelvic metastases were the only site of metastatic disease in 13 (0.5 percent) [56]. However, the findings led to over 200 additional radiographic and 50 surgical procedures, of which 84 percent yielded benign or negative results.

●PET scanning – There is no role for positron emission tomography (PET) scan in posttreatment follow-up. In retrospective cohort studies and a meta-analysis of 16 studies, PET scanning has been consistently more sensitive than conventional imaging and serum tumor markers for early diagnosis of recurrent disease [58-60]. However, the impact on survival and quality of life has not been addressed, and it seems unlikely that this approach would provide a survival or quality of life benefit.

PROMOTING A HEALTHY LIFESTYLE — Patients often ask what they can do to improve their overall outcome from breast cancer. Lifestyle modification can be an empowering and effective way to boost physical and mental health in breast cancer survivors, and possibly to improve outcomes. Observational data suggest that exercise, avoidance of obesity, and minimization of alcohol intake are associated with a decreased risk of breast cancer recurrence and death in survivors [61-64].

Physical activity, diet, and body weight — Diet, physical activity, and weight are collectively considered energy balance factors because they describe the relationship between energy consumed (diet), energy expended (physical activity), and energy stored (adiposity). They have each been linked to cancer outcomes, particularly in survivors of breast cancer. (See "The roles of diet, physical activity, and body weight in cancer survivorship".)

Soy and other complementary therapies — One nutritional issue of interest to breast cancer survivors is the impact of soy products (which contain phytoestrogens) on breast cancer recurrence rates. Although there is no convincing evidence that soy affects the risk of recurrence, the theoretical risk that phytoestrogens could stimulate the growth of hormonally sensitive cancers raises the concern that high soy intake could be dangerous. Thus, moderation of soy intake is generally suggested. (See "Factors that modify breast cancer risk in women".)

Similarly, the safety and efficacy of many other complementary therapies including mistletoe, high doses of vitamins, and trace elements like selenium, zinc, and copper remains uncertain [65]. (See "Complementary and alternative therapies for cancer".)

Alcohol intake — The evidence that alcohol is associated with an increase in the risk of recurrence is limited [64,66-68]. In the largest study, 1897 female breast cancer survivors (on average two years post diagnosis) participated in the Life After Cancer Epidemiology (LACE) study [64]. Those who drank ≥6 grams of alcohol daily (equivalent to at least three to four alcoholic drinks per week) had significantly higher rates of recurrence (hazard ratio [HR] 1.35, 95% CI 1.0 to 1.83) and death due to breast cancer (HR 1.51, 95% CI 1.0 to 2.29) than those who drank <0.5 grams daily. Overweight and postmenopausal women seemed to experience the greatest harm from alcohol intake as measured by breast cancer recurrence risk. (See "Overview of the risks and benefits of alcohol consumption", section on 'Breast cancer'.)

SEXUAL AND REPRODUCTIVE ISSUES

Sexual health — Menopausal symptoms that result from chemotherapy (in premenopausal women) and hormonal therapy (regardless of menopausal status) may make sexual activity less enjoyable and even painful. The psychological sequelae of a breast cancer diagnosis can include strains on relationships and changes in body image, both of which can be detrimental to sexual functioning [69]. Sexual dysfunction is associated with depression in breast cancer survivors [70]. It is important for physicians to routinely ask breast cancer survivors about their sexual functioning. Referral to a sexual health and/or mental health expert may be helpful.

Interventions for women who report dyspareunia or difficulty reaching orgasm may benefit from one or more of the following: local hormonal therapy, vaginal dilators, lubricants, and counseling [71].

Local estrogen therapy — Local estrogen therapy comes in the form of creams and tablets, and it may provide relief of symptoms, but its use is controversial, particularly among women with a history of hormone receptor-positive breast cancer. Although one study demonstrated that vaginal estrogen results in a detectable increase in circulating estradiol levels among women taking an aromatase inhibitor [72], another study suggests that vaginal estrogen therapy does not result in an increased risk of recurrence in women taking endocrine therapy. The impact of vaginal estrogen on recurrence risk was evaluated among 917 women with a breast cancer recurrence (cases) who were compared with 8885 women with breast cancer in remission (controls, matched for age and initial endocrine treatment) [73]. The proportion of patients who used vaginal estrogen was low (less than three percent), and it was predominantly used in those women taking tamoxifen. The main finding was that the use of vaginal estrogen was not associated with an increased risk of recurrence (recurrence risk [RR] 0.78, 95% CI 0.48-1.25).

In light of this low quality evidence, a decision to use vaginal estrogens must be individualized, taking into account tumor characteristics, current symptoms, and the risks and potential benefits of therapy, with input from both the primary oncologist and primary care provider (PCP).

Topical lidocaine — For women with dyspareunia that appears to be isolated to tenderness at the vulvar vestibule, data from a prospective, randomized, double-blind trial suggest that topical lidocaine may provide relief [74]. In this study, 49 women with postmenopausal breast cancer and dyspareunia were randomly assigned to local application of topical aqueous 4% lidocaine or normal saline applied for three minutes to the areas of tenderness. All patients had tenderness at the vulvar vestibule confirmed on physical examination and evidence of significant coital pain. Treatment with topical lidocaine resulted in:

●Significant reduction in their worst pain score with intercourse (from a median of 5 to 0 versus 6 to 4 with normal saline) 

●No tenderness with speculum placement (after application) in 47 women (96 percent)

Of note, very few women who participated in this study had evidence of dyspareunia associated with vaginal tenderness (n = 1) or pelvic floor myalgia (n = 2). Therefore, the data suggest that this intervention may be specific to women who have pain with penetration localized to the vulvar vestibule.

Vaginal dehydroepiandrosterone — Dehydroepiandrosterone (DHEA) is a steroid hormone produced by the adrenal glands. It is an indirect precursor to both estrogen and testosterone, and levels decline with age (see "Dehydroepiandrosterone and its sulfate"). Vaginal DHEA preparations have been reported to improve vaginal health and sexual function in postmenopausal women. However, their safety and effectiveness in women treated for breast cancer has not been clear. (See "Dehydroepiandrosterone and its sulfate", section on 'Vaginal atrophy'.)

One trial presented at the 2014 American Society of Clinical Oncology Annual Meeting suggests that women previously treated for breast cancer may derive benefits from vaginal DHEA. In the Alliance N10C1 trial, 441 postmenopausal women with a history of breast or a gynecologic cancer and at least moderately severe vaginal complaints for at least two months were randomly assigned to a vaginal preparation consisting of a placebo preparation or vaginal DHEA (dosed at 3.25 or 6.5 mg) [75]. All patients were instructed to apply treatment to the vaginal vault on a daily basis. At 12 weeks, women treated in all three treatment arms reported improvements in sexual function and symptoms associated with vaginal atrophy. However, DHEA was associated with statistically significant improvements in sexual satisfaction as measured using standardized questionnaires. Compared with placebo, vaginal DHEA (at the 6.5 mg dose level) was associated with a higher incidence of voice changes and headaches, but appeared to be well tolerated otherwise. Although estradiol levels were slightly increased by the vaginal DHEA in the study overall, this was not true in women receiving aromatase inhibitors. Although we await publication of the final results of this study, these data support the use of vaginal DHEA as an option for postmenopausal breast cancer survivors who suffer substantial vaginal complaints.

Fertility and pregnancy after breast cancer — Young breast cancer survivors may experience infertility after breast cancer due to chemotherapy-related gonadotoxicity and the delay in childbearing required when women are taking the recommended five years of hormonal therapy [76]. (See "Ovarian failure due to anticancer drugs and radiation".)

For women with a history of breast cancer, a subsequent pregnancy does not appear to compromise survival [77-79]. This was demonstrated in a 2011 meta-analysis of 14 case-control studies that evaluated the impact of pregnancy on the overall survival of women with breast cancer [77]. Compared with women who did not get pregnant, those who became pregnant had a 40 percent reduction in the risk of death (pooled risk ratio [PRR] 0.59, 90% CI 0.50-0.70). This outcome is likely explained by a selection bias known as the “healthy mother effect”, such that only healthy breast cancer survivors were able to conceive and carry a pregnancy [80]. In addition, a study presented at the 2012 European Breast Cancer Conference suggests that pregnancy after breast cancer is safe regardless of estrogen receptor status [79]. (See "Overview of infertility and pregnancy outcome in cancer survivors" and "Gestational breast cancer: Treatment", section on 'Pregnancy after breast cancer'.)

While some experts recommend that patients wait two years after completing adjuvant therapy before attempting conception in order to avoid pregnancy during the time of highest relapse risk, limited data suggest that pregnancy sooner is safe [80,81]. Reassuringly, prior breast cancer treatments do not appear to increase the risk of congenital malformation [82]. (See "Gestational breast cancer: Treatment", section on 'Pregnancy after breast cancer'.)

Contraception after breast cancer — While women with a history of breast cancer may wish to preserve fertility, they may not have an imminent desire to become pregnant. Potential options for contraception include barrier methods (eg, diaphragms, condoms) and the copper intrauterine device (IUD). A more extensive discussion of the topic of contraception is covered separately. (See "Overview of contraception", section on 'Women with medical issues and disabilities'.) 

The safety and efficacy of hormonal contraception has not been well studied in women with breast cancer, as these women have traditionally been excluded from studies of hormonal contraceptives. The levonorgestrel-releasing intrauterine contraception device (LNG-IUD) has been evaluated in women with a history of breast cancer, although primarily as a method of endometrial protection from the effects of tamoxifen rather than as a contraceptive modality. Data are limited and inconclusive, but suggest an increased risk of cancer recurrence despite a low rate of systemic hormone absorption. This was shown in one retrospective cohort study of breast cancer survivors that evaluated the risk of cancer recurrence among cases (LNG-IUD users, n = 79) and controls (those who did not use LNG-IUD, n = 120) [83]. The rate of breast cancer recurrence was higher in cases compared with matched controls (22 versus 17 percent, OR 1.86, 95% CI 0.86-4.00), although the difference was not statistically significant. (See "Managing the side effects of tamoxifen", section on 'Endometrial protection'.)

In the absence of prospective data, we agree with the World Health Organization guidelines for medical eligibility for contraceptive use and suggest avoiding hormonal contraception in women with a current or past history of breast cancer (particularly in those with hormone receptor-positive disease) (table 4). Clinicians should discuss the use of a nonhormonal contraceptive method (condom, diaphragm, copper IUD) and help the woman choose the method most consistent with her lifestyle and beliefs.

QUALITY OF LIFE — Quality of life is a multidimensional construct that takes into account the physical, mental, social, economic, and spiritual aspects of life. Limited data suggest that patients treated for breast cancer have good quality of life, particularly as they move beyond the treatment period [4,11,84-86]. However, they may continue to have some lingering concerns. For example, in one study that included over 280 long-term survivors (without evidence of a recurrence >7 years) compared with almost 170 controls (without a history of breast cancer), self-reported deficits appeared to be limited to issues related to cognitive functioning and finances [84].

Multiple studies have shown that exercise improves quality of life in breast cancer survivors. Therefore, patients should be encouraged to adopt a physically active lifestyle following treatment for breast cancer. Further discussion on the role of physical activity in breast cancer survivors is discussed separately. (See "The roles of diet, physical activity, and body weight in cancer survivorship".)

COORDINATION OF CARE — If agreed upon by the patient, the treating oncologist, and the PCP, shared care would provide treatment summary information and a plan for follow-up care to both the patient and the PCP. The level of shared follow-up by the oncology specialist and PCP could depend upon patient and provider preferences. Communication between the PCP and subspecialist is vital given that uncertainties about physician roles and responsibilities can lead to deficiencies in care [4]. (See "Overview of cancer survivorship care for primary care and oncology providers", section on 'Coordination of care' and "Assuring quality of care for cancer survivors: The survivorship care plan".)

INFORMATION FOR PATIENTS — UpToDate offers two types of patient education materials, "The Basics" and "Beyond the Basics." The Basics patient education pieces are written in plain language, at the 5th to 6th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10th to 12th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.

Here are the patient education articles that are relevant to this topic. We encourage you to print or e-mail these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on "patient info" and the keyword(s) of interest.)

●Beyond the Basics topics (see "Patient information: Lymphedema after cancer surgery (Beyond the Basics)")

SUMMARY AND RECOMMENDATIONS

●Essential elements of management for breast cancer survivors who have completed active treatment and have no evidence of disease are cancer surveillance, encouragement of adherence with ongoing treatment and lifestyle recommendations, treatment of medical and psychosocial consequences of cancer and its therapy, and care coordination between specialists and primary care providers. (See 'Introduction' above.)

●Survivor follow-up should include updated history, regular physical examination, and breast imaging (ie, mammography). The follow-up should not only focus on cancer surveillance, but also on any late-treatment related complications, psychosocial issues, and occupational problems. (See 'Components of follow-up' above.)

●All women with breast cancer should be counselled about the role of genetic testing and counseling. (See 'Genetic counseling' above.)

●Laboratory studies or radiologic imaging to screen for distant recurrence in asymptomatic patients should not be performed. (See 'Role of laboratory evaluation and other imaging' above.)

●Diet and exercise can promote well-being and may improve survival. All breast cancer survivors should pursue a healthy lifestyle that includes following a prudent diet, pursuing or maintaining an active exercise program, minimizing alcohol intake, and refraining from smoking. (See 'Promoting a healthy lifestyle' above.)

●Treatment may affect many aspects of sexuality, and breast cancer survivors should be routinely questioned about concerns related to sexual health and counseled or referred as needed. (See 'Sexual health' above.)

●Although data are limited, studies do not indicate increased risk of recurrence for survivors who become pregnant or an impact on pregnancy outcomes. (See 'Sexual and reproductive issues' above.)

●For women with breast cancer who wish to preserve fertility but delay pregnancy, we suggest not administering hormonal contraception (Grade 2C). Physicians should counsel women about methods most consistent with their lifestyle and beliefs. Alternative forms of contraception include copper IUD and barrier methods. (See 'Contraception after breast cancer' above.) 

●A variety of clinicians may adequately follow women after their primary therapy for breast cancer. Clinicians should be experienced in the surveillance of these patients, the complications that may arise from treatment, and in breast examination, including the examination of irradiated breasts. A shared care model that integrates both specialists and primary care providers on ongoing follow-up care may provide the best adherence to guidelines for recommended care; but communication and coordination of care is required. (See 'Coordination of care' above.)

NickiDanny

Lotus and Susan, thank you. What a wealth of info., this helps me quite a bit put things in perspective . It can be -it is so overwhelming and I get so confused sometimes. Thank you for taking the time. Susan, I pray the BC cloud stays away and wellness for all of you.

I was Stage 2b when dx in 2012. Had a mastectomy, chemo TC, and Herceptin. I haven't had a reconstruction yet. Interesting about the MO not checking me, my grandmother's his patient too and he's never physically examined her breasts either.  Hmmm.....I really like both the BS and the MO, maybe I simply have not been vocal enough. I've been asking for referrals from some other survivors in my area I've come in contact with. One happens to be in the same oncology group but has a different doctor, and he checks her every visit.

The suspicious area I mentioned I was feeling turned out to be a tiny 3mm solid per US so I'm back in for biopsy on Monday. Aarrrggghhhh

I am so relieved to have to have this outlet for sharing and support. There's no way I can tell my Mom right now.

Lotusconnie

NickiDanny, I will be thinking of you and pray for you! Hang in there. Try not to think of the worst scenario yet. Is it on your breast? More likely it could be a fibroadenoma or something. If on mastectomy side, it could be scar tissue etc. It could be very manageable even if it is something (which is much less likely).Best of luck!

NickiDanny

Thank you so much. Yes, it's on my breast. Praying for b9. I'll post results when I get them.

NickiDanny

Had my biopsy yesterday - oddly, I am not as anxious as I was. Thought I'd be a wreck about now. Peace and wellness to everyone.