For many patients, the period after breast cancer treatment ends is a surprisingly challenging one. You might think that after completing what could be months of treatment, every patient would simply pop open a bottle of champagne and move on. For most women, however, the range of emotions can be much more complex. Yes, there’s the initial sense of triumph, but after the high, there’s often a period of feeling very low. You may look and feel very different. You may have undergone a dramatic physical change such as a mastectomy or hair loss. And despite the misconception that women lose weight from cancer and chemotherapy, it’s actually quite common for some women to gain weight as a side effect of some of the treatments (and because you may have less energy and therefore engage in less activity during the treatment period). Even if your particular treatment plan did not result in significant physical changes visible from the outside, your sense of yourself as invulnerable and always healthy will certainly have changed in some way, forever.
Now that you’re no longer seeing your doctors on such a regular basis, you may experience feelings of despair and confusion. One patient explained it to me this way: “Ever since my treatment finished, I don’t feel that I’m being protected from the cancer anymore.” I’ve also seen patients who struggle with maintaining patience during the recovery period. I had one patient who runs marathons. During and after her chemotherapy, however, she was too tired and too drained to run for a period of weeks. She found it very demoralizing to slow down, and we spent a lot of time during her recovery period talking about patience and about taking some time for the healing to happen. Another patient was a reporter who worked for a worldwide news agency and traveled regularly to report from all parts of the planet, wherever the latest conflict took her. After she finished surgery and was about to start chemotherapy, I warned her that she might want to cut herself some slack and sit out some of the intense traveling while undergoing treatment. There would be no shortage of bigger stories in the future, I suggested. She sort of smirked at my comment, as if to say, “We’ll just see about that.” About two months later, around the time she was finishing her fourth cycle of chemotherapy, I was home with my family eating dinner and the news was on. I recognized the voice coming from the screen, and looked up to see my patient reporting from Moscow—in her wig and a baseball cap. What did I know about patience and recovery? When it came to her case, apparently not much.
The point is that there is no fixed timetable or script to follow when it comes to the pace of your personal recovery, and there is certainly no need to rush. Whatever type or types of treatment you have, it can help to keep in mind that the physical recovery from any type of breast surgery and treatment is much like recovery from an injury. If you sprain your ankle, you don’t go out the next day and run four miles. Usually you rest it for a period of time, and then, when you are ready, you start back slowly, listen to your body, and build up strength over time. That’s how it works with cancer recovery—it’s slow to begin with, but over time you begin to feel better and stronger. Most women who were healthy and active in the first place can return to their baseline level of function. It just takes time. Here is a summary of some of the physical, mental, and emotional aspects of recovery that patients tell me about every day.
Physical recuperation—surgery, chemotherapy, radiation
Lumpectomy. Lumpectomy surgery, with or without sentinel node biopsy, requires some recuperation, but physical recovery is usually fairly rapid. Because it is a short procedure, there is almost never an overnight stay in the hospital, which means you will be up and around almost immediately after surgery. While you may be a bit sore, you will be able to do most of your usual activities on your own, including eating, going to the bathroom, and getting dressed without any assistance. Many of my lumpectomy patients who have office jobs return to work within a couple of days. Driving might be associated with a bit of discomfort because of the arm movement involved in turning the steering wheel, especially if you have had lymph nodes removed under your arm, but this soreness should not last for long. Work or activities that involve a higher level of physical activity, such as lifting heavy things, moving things, heavy cleaning, or exercise, may require a bit more of a recovery period, two to three weeks, before you can fully return to those functions.
If you have a lumpectomy, you can expect a complete return to your baseline function, and there is usually no change in sensation in the breast or nipple. Occasionally patients complain of a pulling or tightening sensation within the breast even years later, perhaps from scar tissue, but these sensations, which can come and go, usually do not affect overall quality of life or function in any major way.
Mastectomy. Mastectomy or bilateral mastectomy involves a longer physical recovery period than lumpectomy, usually four to six weeks. The length and intensity of the recovery period also depends on the type of reconstruction, if any, you have chosen to have. (For more details on the different types of reconstruction, refer to chapter 7.) Mastectomy, with or without implant surgery, requires a hospital stay of one to two nights. While mastectomy is definitely a major surgical operation, we only remove skin and soft tissue and don’t cut through muscle, as with abdominal surgery or surgery within the chest cavity. As a result, most women can be up and around and using their core abdominal muscles to sit up, even the day of surgery. Full activity in four to six weeks is the norm.
Mastectomy with a flap reconstruction usually requires a three- to five-night stay in the hospital, since taking tissue from another part of the body involves recovery of the donor site as well. For women who have a mastectomy and abdominal flap reconstruction, recovery would be similar to that of having a tummy tuck at the same time as breast surgery, which means greater initial immobility and a longer total recovery period (perhaps six weeks or longer).
For mastectomy with either type of reconstruction, it can take a while to adjust to new sensations, or lack thereof, such as numbness along the chest wall and where the nipple used to be.
A WORD TO THE WISE
Mastectomy surgery may also lead many women to reassess their wardrobes. If you don’t have reconstruction, you will most likely wear a prosthesis made of foam or gel in your bra to fill out the cup. With the prosthesis and post-mastectomy bra, most clothing, including many one-piece bathing suits, can be worn in exactly the same way without anyone noticing any outward change at all, but wearing certain kinds of clothing items can be a challenge. For example, strapless dresses are tough without a breast to hold one side up: one patient of mine had to rethink her mother-of-the-bride dress when she had a mastectomy about one month before her daughter’s wedding. If you do have reconstruction, then you may find that your breasts are much “perkier” than before. The new shape and size of your breasts can definitely influence what you choose to wear: either more or less revealing, including in the bathing suit and lingerie departments.
For many women who are recovering from breast cancer surgery, especially mastectomy, feeling self-conscious is natural, especially when it comes to intimate relationships and being naked. There is no question: your new breast (or breasts) will look and feel different. It’s also important to remember that reconstruction is a process, so your appearance may be something of a work in progress for the first few months after surgery. When it comes to intimate relationships, communication of course is key: you and your partner should be able to speak about the changes that will affect both of you before, during, and after the process. There is no question that such surgery comes with adjustments, and getting used to the new appearance and sensations (or lack of sensation) can take time for you and for your partner. The good news is that many of my patients have told me that they have a newfound closeness with their partner after going through the trauma of a cancer diagnosis and coming out the other end together.
Axillary dissection
Recovery from the larger axillary dissection surgery involves maintaining some degree of vigilance against the development of lymphedema (arm swelling related to the removal of a large number of lymph nodes under the arm; see chapter 5 for more details). Approximately 20 to 30 percent of women who have all their lymph nodes removed will develop lymphedema. This risk increases to 40 to 50 percent when the lymph nodes are removed and subsequent radiation directed to the armpit is also needed. Lymphedema can develop at any time, with or without known triggers. Events that can increase the risk of lymphedema include anything that puts the hand or arm on the affected side at risk for infection, any arm activity that is exhaustive and repetitive, and any type of garment or activity that restricts blood and lymphatic flow to the forearm or hand. I usually advise my patients who have their lymph nodes removed to be aware, but not obsessive, about the risk of lymphedema. If signs do develop, then early intervention with massage and arm elevation can help alleviate symptoms. For some women, particularly obese and diabetic women, lymphedema is a lifetime struggle, but it’s important to know that while this condition can be uncomfortable, unsightly, and unwieldy, it is not life-threatening for the vast majority of women. In very rare circumstances, women with chronic lymphedema can develop a specific type of cancer of the lymph system in the arm, called lymphangiosarcoma. Again, this is extremely rare and not something to worry about for most women. Whichever doctor continues to monitor you over the long term will check you for signs of lymphedema and its potential complications.
Recovery from chemotherapy and hormonal therapy
During recovery after chemotherapy, your hair will start to grow back, which for many women is the first triumphant sign that a significant part of treatment is over. Most women do recover from chemotherapy completely, but there are a range of different side effects that can stay with you, including neuropathy (numbness or pain, especially in the fingertips, feet, and toes), menopausal-type side effects (including hot flashes and long-term effects on fertility), and the dreaded “chemo-brain” (for more on all of these, refer to chapter 9). Some chemotherapy agents are even associated with a small increased risk of secondary cancers such as leukemia. It’s important to know that side effects are potential, not certain or even likely.
For hormonal therapy, the treatment is long-term, and changes after cessation of medication are minimal. Recovery from chemotherapy is gradual, with an increasing feeling of returning to normal over the ensuing weeks after treatment ends. It’s also important to keep in mind as you recover that some women who develop unwanted side effects experience feelings of regret over taking treatment. It’s natural to wonder if perhaps you should have opted not to take a certain treatment so that you wouldn’t have to live with the side effects. When it comes to the years of hormonal treatment, some women even consider discontinuing treatment to reduce the side effects they experience. But having regrets and second-guessing yourself is never very productive. And it’s critical to keep in mind the key fact that these treatments were considered necessary to increase your chances of survival from breast cancer. So instead of regret, you can derive some peace of mind from knowing that you have done everything you can to give yourself the best possible outcome for the long term.
Recovery from radiation
For the most part, radiation affects your skin and your energy levels, and so after treatment ends, you will begin to see resolution of the skin changes, and increased energy. When radiation concludes, you can also return to your usual routine without the drudgery of travel to your daily radiation appointment, which after six weeks can be extremely liberating. Interestingly, because radiation is often the last type of treatment given, finishing radiation can often signify the true completion of active treatment, and become associated with a wave of feelings totally disproportionate to what you might expect.
Emotional recuperation: what to expect
Although cancer is a physical disease, there is no doubt that fighting breast cancer takes patients on an intensely emotional journey. From the initial shock of diagnosis to the stress of undergoing treatment to the joy of the cancer being eradicated, most patients find themselves experiencing the full gamut of emotions. This psychological journey continues after active treatment is over too. Part of the struggle for patients has to do with figuring out the “new normal.” Yes, the goal is for any cancer patient to get back to normal life, but more often this means reestablishing your sense of what normal means to you now. Your new normal may mean living with some fear of cancer recurrence. Your new normal may mean being much more aware of your health than you ever were before. The new normal may also mean you have a fresh outlook on life and a deeper appreciation of everything you may have previously taken for granted. For many patients, this leads to a reevaluation of their priorities, resulting in positive and dramatic changes. Jobs, relationships, hobbies, charity work, religious affiliation or spirituality—for most of my patients, their outlook on life becomes subject to at least some reassessment and change. My advice is to listen to your feelings; don’t try to override them or “get over” cancer right away. Over time, the experience of cancer will fade into the background and you will begin to find your way forward again. And if you find yourself still struggling to adapt a year or more down the line, you may want to consider seeking professional emotional support, either from a group of other survivors or from a trained counselor.
Your follow-up regimen
After the active treatment phase is over, every doctor has his or her own preferred follow-up regimen. Most see patients every three to four months to start, transitioning to twice a year and ultimately once a year. The problem arises when you have multiple doctors involved in your care and each doctor wants to see you two or three times a year—you can quickly end up with doctor appointment overload! It’s hard to return to normal life if you are dragging yourself to the surgeon, the medical oncologist, or the radiation oncologist every month.
If it’s possible, you can ask your doctors to coordinate your visits. Perhaps you will see your surgeon once a year, every January, and then see your medical oncologist once a year, every July. This way, you are receiving continuous care from all your doctors while appropriately spacing out the visits. On the other hand, you don’t want to feel abandoned by your doctors, and most breast cancer surgeons and oncologists do see their patients regularly in follow-up for at least a few years after treatment.
Breast cancer survivorship programs
Many centers and hospitals that treat breast cancer patients will have a “survivorship” program that you can join after a varying number of years, usually starting a minimum of two years post-treatment. Survivorship programs are a great way to continue with cancer care follow-up while still moving forward with a focus on overall health. A good survivorship program will help you get back up to date on other basic health checks such as Pap smears and colonoscopies (many cancer patients fall behind on other basic and routine exams during cancer treatment). In addition, if there are any long-term side effects related to your cancer treatment, survivorship caregivers—who are often MDs but can also be physician assistants or nurse practitioners working under the supervision of the doctor—are trained to watch and screen for these. Many survivorship programs also are able to refer you to support groups, psychologists, and psychiatrists if you feel you might want this added support.
Recommendations for follow-up tests
Once you’ve completed treatment for cancer, it’s normal to be concerned that the cancer will come back. Every woman who comes to my office post-treatment wants to discuss testing going forward: “Shouldn’t I get more frequent scans and tests of the body to find out if the cancer has come back so it can be detected early?” The answer is that unless you underwent a bilateral mastectomy, where both breasts have been removed, then yes, we need to continue with screening. This will include appropriate breast imaging tests and physical examinations—usually on a yearly basis, but sometimes twice a year for the first two years after treatment.
Oftentimes it’s your surgeon who will make sure appropriate imaging studies of the breasts and physical examinations are being performed going forward. He or she knows your case the best and can determine if any changes on your physical exam are cause for concern. Some patients will also need to add ultrasounds or MRIs to their screening regimen (see chapter 1 for more information about screening and decision making about additional studies). It’s important to remember that if your cancer was missed by a mammogram the first time, this does not necessarily mean your mammogram would miss a cancer the second time, so you may not necessarily need every test available to screen for recurrence. Furthermore, unless you had a bilateral mastectomy, you do still need a yearly mammogram, whether your cancer was or was not detected by mammogram the first time, as mammography is still the best way to detect recurrence the earliest in most women.
A WORD TO THE WISE
Scanning for recurrence: when more testing isn’t better
When it comes to early detection of local recurrence (in the breast), some patients do need a more frequent screening schedule in the ensuing year or two following surgery. And adding tests such as ultrasound or MRI to mammograms may be appropriate for some, but not all, and should be discussed with your doctor. The ultimate goal, however, is to return you to a schedule of yearly mammography. Why is this? For most of my patients, going back to annual mammograms feels counterintuitive: “I’ve had breast cancer, so I should be screening as much as possible to make sure we catch the cancer early if it comes back!” In general, it’s important to know that more testing is not always better and does come with a potential price: the more tests you have, the greater the risk of the tests showing false positive findings.
The same is true for scans of the body looking for cancer recurrence. Imagine you have a CT scan of the body after having breast cancer and the results show some tiny dot on the lung. Unless you had regular CT scans from years prior to your diagnosis, we have no way of knowing if this dot was there before the breast cancer or if it’s a new cancer that’s growing within the body. The dot may be a scar or something completely benign. Or not. If this dot is big enough, your doctor may recommend a biopsy, which involves either a major lung operation or a needle biopsy, both of which are associated with substantial risks. If the dot is too small to find on a biopsy, your doctor will usually recommend waiting three to six months and getting another scan to see if the dot grew. Neither option is particularly attractive: either you need a major interventional procedure to find out if the dot on your lung means your cancer has spread, or you are going to spend the next few months of your life stressed and anxious while you wait for the next test. And most important, finding a spot on the lung that is breast cancer spread in no way represents early detection or increases the likelihood of successful treatment for metastatic breast cancer.
So before you go to your doctor demanding tests and scans to quell your anxiety that your cancer has come back, understand that more tests are usually not a great antidote for your fears of recurrence, and can end up doing more harm than good.
Tumor markers: a cautionary tale
My patient Kate was doing really well post-treatment. Her breast cancer diagnosis was three years in the past and she was back to her old active life. Kate was seeing me every six months and her oncologist every six months for routine exams and getting mammograms once a year. Then she went for a routine visit with her primary care doctor, who told Kate that in addition to her existing screening regimen with me and her oncologist, she should really get her tumor markers checked.
Tumor markers are a type of blood test that can be valuable tools for screening some types of cancer survivors (those who have had prostate cancer, for example) to determine whether the cancer has come back. For breast cancer survivors, however, tumor markers are not a very accurate test, since there are many factors that can affect marker levels that have nothing to do with cancer (smoking, infection, and so forth). While in select patients tumor markers can be useful to track response to treatment and monitor those at high risk for recurrence, we also know that for most women they are not useful or helpful. In fact, tumor markers can be completely normal in women with breast cancer and completely abnormal in women with no breast cancer! For this reason, these tumor markers are not recommended as part of routine follow-up for most women who have had breast cancer.
Kate’s primary care physician felt otherwise, though, and so he explained to her that it must have been an oversight that we hadn’t ordered the test. He immediately drew blood on Kate and sent it out to be tested for tumor markers. The normal range for tumor markers is 31 or under. Kate’s result came back at 33. And that’s when Kate called me, frantic. Though she had been feeling perfectly well and happy, she was now understandably scared out of her mind.
Kate came in to see us and we scanned her from head to toe. When the scans revealed nothing specific or concerning, we explained to her that this was reassuring but that we would have to recheck the blood test again in a month or two, and if the results continued to trend upward, we might need to repeat the scans, since in some cases elevated tumor markers can precede the manifestation of metastatic disease.
Needless to say, the next month was not a happy time for Kate. She found it impossible to focus on anything other than the possibility that the cancer had come back. She was having headaches now. Were these a result of the extreme stress she was experiencing, or were they, heaven forbid, related to brain metastases? It was awful watching someone go through this, especially when she had been doing so well beforehand.
When we repeated the blood test a month later and the results came back at 22, well within the normal range, Kate popped open a bottle of champagne, and she sent me one too. I opened my bottle that night at home and drank a toast to her health. Sadly, my patient had to learn the hard way that every test, even something as seemingly innocuous as a blood test, has the potential to open up a can of worms without any real benefit in the long term. Why were her results elevated a month before? We will never know. But one thing was for sure: Kate and I agreed that as long as she felt healthy, there would be no more blood tests for tumor markers. Fortunately, Kate’s primary care doctor got on board with the plan as well.
A WORD TO THE WISE
As you transition from actively fighting the disease to living a healthy life, you’re going to have less frequent contact with your cancer treatment team. Weaning yourself off frequent doctor visits should happen gradually and is a good thing—you don’t want to be a patient forever! But this time can also leave you vulnerable to chatter and second opinions from medical professionals who are not breast cancer specialists and also nonmedical sources. Bonding with other breast cancer survivors who are years out from their treatment may provide welcome reassurance during your recovery period that you too can and will be a long-term survivor. But breast cancer survivors love to compare notes, and this happens in support groups, in chat rooms online, and in person. Hearing too many stories from others who underwent a different treatment or chose a different path can leave you with feelings of regret and confusion, second-guessing the very sound choices you made in the first place. This is a good time to remind yourself that when it comes to breast cancer treatment, one size does not fit all. You made the right decisions for you based on your specific case, in collaboration with your team of specialists, and you have every reason to feel confident in the care you received and the decisions you made.
THE TAKEAWAY
• Recovery takes time, mastectomy longer than lumpectomy, and some people longer than others.
• Completing treatment means less frequent visits with the doctors. Remember: this is a good thing!
• When it comes to follow-up testing, more is not always better.