How Do I Cope with Changes in My Body?
PATIENTS OFTEN TELL ME THAT the physical changes brought about by cancer treatment are the most challenging to deal with. “My body is so different,” they say to me. “I don’t recognize myself anymore.” People with cancer may experience noticeable weight loss or hair loss or surgery that alters their bodies. It’s tough to look at yourself in the bathroom mirror and see scars or a face swollen from steroids, or to walk differently because of neuropathy. A big part of living well with cancer is figuring out who you are in this new body and how you relate to others even though you may be wondering whether they look at you differently and whether they see you as a cancer patient rather than a person.
It’s hard to know which changes are going to be the most difficult for you. I saw a woman at the clinic recently who had been living with breast cancer for more than five years. Julie had gone through a mastectomy and several cycles of chemotherapy in which she had lost a significant amount of weight. And yet she prided herself on not letting the diagnosis define her. She continued to work nearly full time, and she still went to the gym several times per week. Now, for the first time, she was losing her hair as a result of treatment. Julie told me how strange it was to look at herself in the mirror with her new wig. “I feel like a cancer patient now,” Julie said to me. “I haven’t until this point.” For her, the idea that acquaintances and strangers would look at her differently was the hardest part. She worried that wearing a wig was like wearing a sign that says, “I have cancer.” And she worried that people would want her to talk about her diagnosis even when she didn’t feel like talking about it.
In this chapter, I’ll describe some ways to cope with these physical changes that can be temporary, such as hair loss, or that are permanent, such as ostomy bags. And I’ll talk about changes in intimate relationships and sexual function and how to cope with those.
Hair Loss
Losing your hair is hard for everyone, but especially for women who live with a cultural expectation of having not just hair but a hairstyle. I advise people to ask the oncology team about the likelihood that any regimen will result in hair loss and when it might occur. Oncologists and oncology nurses know how different regimens often affect patients. Still, they may not always be accurate, as everyone reacts differently. Julie had told me that her oncologist estimated that just 5 percent of people lose their hair on her regimen, and she turned out to be in that minority. So she was happy that she had gone to a wig store to get a high-quality wig made before she lost her hair. The fitter was able to see how she wore her hair while she had it and crafted a wig that was in keeping with that style. Wigs can be expensive, depending on the type that you choose, and many insurers don’t cover this cost. Also, wigs made of 100 percent human hair often need more upkeep than those made of other materials. Some people ultimately don’t like wearing a wig and opt for scarves or hats instead.
There is a lot of advice online about how to manage the actual hair loss as it’s happening. Sometimes hair loss is gradual and sometimes rapid, and you may see advice to keep your hair close cropped or to shave your head as the thinning progresses to keep from dealing with hair coming out in clumps. After you experience hair loss, you may notice that you get cold more easily and that the skin on your scalp is more sensitive and more vulnerable to sunburn.
For many people, the best part of chemotherapy-induced hair loss is that their hair will grow back when the treatment regimen ends or changes. Hair should start to regrow about three weeks after your last treatment. Julie’s concerns about wearing a wig eased when she realized that some coworkers didn’t notice it, and those who may have noticed knew better than to comment.
Neuropathy
Some patients experience pronounced neuropathy during chemotherapy. They may have numbness or pain in their hands that interferes with writing and typing or fastening buttons. Some people have decreased sensation in their feet, affecting the way they walk. They may have to step carefully. I’ve had patients say that their grandkids ask them why they suddenly seem so frail. And they feel frail, as though their bodies don’t work as well as they should. Avid golfers have trouble setting up shots or walking through a golf course because they have lost a strong sense of balance. I had a patient who used to go to the local Y to work out every day, was part of a biking team, and was a serious runner who competed in multiple races a year but now has to confine himself to swimming laps, because it’s safer to be in a pool than to be out running or biking. Dave usually tells patients that it can take months for neuropathy to heal, and sometimes you won’t feel normal again for up to a year. But when you stop using the chemotherapy regimen that is causing the nerve problems, most neuropathies will resolve over time. However, some neuropathies get better but never completely go away.
Getting Used to a New Body
My patients have gone through mastectomies, or they have had G-tubes, or gastric (feeding) tubes, inserted. They live with ostomies that help drain fluids, or they have fluid buildup in the abdomen. In some cases, they take steroids or other medication that causes facial swelling, or they have bowel changes that mean they have to be near a bathroom much of the time. All of these changes make patients feel that they have exchanged their familiar body for something else, and it takes time to get used to this new body. I remind patients that there is a loss related to these changes, and it’s absolutely normal to grieve these losses.
It’s also important to figure out who you are in this new body, and make strategies for how to live with these changes. This may mean asking questions about physical changes even before you have significant surgeries. A patient of mine who was about to get a G-tube for supplemental nutrition asked me, “Can I swim with one of those?” Swimming was one of Margaret’s favorite activities, and she didn’t want to give up swimming with her grandchildren in the summer. I didn’t know, but with a little research I found that the answer is yes. For Margaret, the ability to focus on what she could do that gave her joy helped her go through the surgery that would change the way she eats. Even if these changes have already occurred, you can think about the activities you love to do and can still do in this new body. You can find a new normal.
Some people put energy into looking as normal as possible because that gives them more confidence as they continue to work and socialize. My patient Tara had metastatic ovarian cancer (it had spread beyond the ovaries). Over time she needed both a tube for draining fluid from her abdomen and kidney tubes to drain urine. It was essential to Tara to maintain her sense of fashion despite these bulky encumbrances. She found some stylish pants with an elastic waistband and paired those with flowing scarves that she knotted over her shoulders. When she lost her hair, she wore a wig until summer, when she gave it up in favor of a straw hat. She told me, “I just needed to figure out my new style.”
Many people feel alone at first in these changes because they have never known anyone who had to deal with these issues. But you aren’t alone. There are lots of people going through the same challenges; many of them have written blogs about the experience or have created websites that detail great coping strategies. Some have even designed products to help others like themselves. By reading some of these accounts, you may find that these physical changes don’t need to define you. They are simply part of the new you.
These body changes also may be unsettling for your partner. Remember that your partner may be grieving the loss of changes in your body. The sooner you both can become comfortable with this new body, the better.
Changes in Sexuality
My patients are sometimes reluctant to talk about how their cancer affects intimacy with their partner. Patients may have strong feelings about their new bodies that make it difficult to feel attractive or sexy. One of my patients who had a double mastectomy told me that it took her several months after her physical recovery before she felt like having sex again. “My husband told me that I was beautiful and I believed him. And he told me that he didn’t marry me for my breasts. I knew he was okay with it. I just needed some time to feel beautiful again in this new body, but it happened.”
Cancer treatment can also change sexual function. It can affect sexual organs, functioning, and drive. Sometimes factors related to the illness like pain or fatigue make actually having sex too tough. You don’t have to assume that intercourse will be difficult forever, but it may be difficult right now. And I also remind people that sexual intercourse is just one way to be intimate with your partner.
Intimacy and Sex
Some couples feel that they ought to be having sex, even when intercourse has become tricky because of cancer treatment. Sometimes the patient with cancer feels a sense of obligation to his or her partner, or in some cases, people think that having sex would make them feel more like themselves. Partners sometimes also want to initiate sex, because they want to reaffirm the intimacy that they feel or because they want their partner to feel more whole and to feel loved and appreciated. Couples need to talk about these issues and see whether each person wants the same things. It’s easy for couples to make assumptions about what the other person wants or needs emotionally and physically.
Cancer and treatment can affect your ability to have sex in the way you have before. Your doctor may not raise the issue of sexuality and sexual function, but continuing to be intimate with your partner is a meaningful part of living fully with cancer. Raising these issues with your medical team is part of advocating for yourself and your needs. Many large cancer centers have sexual health clinics and specialists who can help patients deal with the ways in which cancer has affected their sexuality.
I like to remind couples that intimacy isn’t the same thing as having intercourse. They know this already, but it’s good for people who have been coupled for a long time to remember that intimacy comes from all kinds of touching. Intercourse can give way to caressing, holding, hugging, and kissing. Holding your partner’s hand is not the same as holding the hand of your child or your friend. You can maintain tremendous intimacy with your partner, even if you can’t have sex in the way that you have in the past. The idea of intimacy can change and become much more emotional.
Sexual health specialists will also say that intimacy is sometimes a loaded word. It sounds like serious work, and in reality sex is a form of play. You can and should playfully explore the body that you have now, focusing on sensations. What feels good? Erogenous zones can change after cancer treatment, but they are still there. If intercourse is stressful, you can always step back to what feels good.
Logistics of Intercourse
Many patients and their partners feel daunted by the logistics of sex. They have so many questions: Is it safe? Can my partner get exposed to the chemotherapy? Is there risk of infection? What if I get pregnant? What if it hurts?
Is it safe? While the risk of passing chemotherapy to a partner is probably very small and largely unknown, most doctors will tell you to use a condom during the first two weeks after an infusion.
Risk of infection. There are times after an infusion when you are at higher risk of developing an infection, and your team may advise against sexual intercourse during this time, usually seven to ten days after an infusion, when your white count is at its lowest point. Also, if your oncology team is worried about your risk of infection because you have a low white blood cell count, you will want to use condoms to minimize your exposure to sexually transmitted diseases.
Risk of pregnancy. Getting pregnant on most disease-modifying therapy would not be safe. You need to ask your medical team whether this is the case for you. Every regimen is different.
Pain management. Some partners worry that they will hurt the patient during sex. If pain has been an issue in treatment, you will want to use proactive pain management. Work with your team to make sure your pain is well controlled. You may also need to premedicate with a breakthrough pain medication (see chapter 11) one hour before sex to ensure more comfort. I also remind people to think about different positions and ways of pleasuring yourself and your partner if intercourse is too painful. Sometimes side positions are easier and require less energy. But you might also consider alternative forms of sexual intimacy to penetration.
Fatigue. This is another common barrier to having sex and may require some planning to work around it, because there aren’t many treatments for fatigue. Most people with cancer-related fatigue do say there is a time of day when they feel most energetic. That would be a time to think about initiating sex. I also remind patients that fatigue gets worse when you have other symptoms that aren’t controlled, so work with your medical team to treat them.
Working around ostomies and tubes. Some people feel self-conscious about having sex when they have an ostomy bag or other external tube. Many couples work around this by trying different positions. I had one patient with an ostomy bag after her colon cancer surgery, and her solution was to wear a beautiful silk camisole over it. Her husband didn’t mind the bag at all, but the camouflage helped her to feel sexy.
Physical Issues with Intercourse
Cancer treatment can also change your ability to engage in intercourse. For men, some cancer treatments change their ability to obtain and maintain an erection. Erectile function requires an intact nervous system in the lumbosacral (lower) spine and pelvis as well as an intact vascular system in the pelvis. Both of these can be affected by age or by medical conditions such as diabetes. (In fact, erectile dysfunction is common among men who are long-term diabetics.) Surgery and radiation administered to the pelvis can affect both the vascular system and nervous system and contribute to erectile dysfunction. If this happens, patients can take a class of drugs called phosphodiesterase inhibitors, such as sildenafil (Viagra) that can help with the vascular system and make it easier to get or maintain an erection.
However, if the nervous system has been disabled in the pelvis or lower spine, these drugs might not have any effect. I usually tell men that the only way to find out is to try them and see whether they work. If they don’t, men can work with a urologist to explore other options, such as penile implants.
Libido and erectile function are also sensitive to the levels of testosterone that a man produces. Both chemotherapy and radiation treatments in the pelvis can cause low testosterone, and it’s important to check this level when you want to know what’s causing erectile dysfunction. There are testosterone replacement therapies that men can take, but some cancers such as prostate cancer are sensitive to testosterone. You don’t want to take any hormone therapies that will make your cancer worse, so ask your oncologist if it’s okay to take a testosterone replacement.
Women can also have difficulties with intercourse during and after treatment. Postmenopausal women and those who have been made menopausal by chemotherapy, radiation, or surgery can experience vaginal dryness. Some treatments for vaginal dryness include vitamin E suppositories or over-the-counter lubricants. There are also estrogen creams that can really help. You will want to ask your oncologist about the safety of using products that contain estrogen if you have a hormone-sensitive cancer, such as breast cancer. Some oncologists won’t want you to use any product that contains any estrogen if you have a cancer that is sensitive to hormones in your body. The safest lubricants are water based and don’t contain any oils or hormonal supplements.
Women who have had radiation treatments to the pelvis sometimes experience scarring of the vagina that makes intercourse difficult or impossible. You should talk to your oncologist about the risk of this happening as you start radiation treatments. Vaginal dilators that doctors can use during radiation treatments can help prevent this scarring and preserve a woman’s ability to have intercourse after the radiation therapy ends.
The bottom line is that you should feel free to be open about all sexual issues with your treatment team. Some hospitals and practices have started dedicated sexual dysfunction clinics or have physicians who are known for their expertise in this area. Most oncologists can handle the basic questions and issues, but a dedicated specialist is often needed to answer more complex questions and issues. So ask your treatment team where you can get help for any sexual dysfunction.