Survivorship

Many of the treatments used for gynecologic cancers leave a lasting impact on the body. Ranging from fatigue to chemo brain to foods tasting differently, these symptoms can be barriers to you feeling well. Here we explain some of the common issues women face and provide resources for more comprehensive information. We encourage you to talk to your healthcare team about the changes you have noticed in your body.

Cancer-related fatigue is more than just feeling tired and can interfere with your daily activities. It is commonly noticed around the time of diagnosis and can persist well beyond when you finish your treatment. It is important for you and your doctor to rule out other causes of fatigue, like anemia or low thyroid function. Exercise and a good night’s sleep are good for everyone, and many women also benefit from participating in cognitive behavioral therapy (a kind of counseling) and support groups.

“Chemo brain” can range from a minor and occasional loss of concentration to a measurable deficit in cognition. This symptom is worsened in women with symptoms of depression, fatigue, or other illnesses that are not well-controlled. Routine physical activity, stress reduction and good sleep patterns are important in combatting chemo brain, and sometimes patients benefit from occupational or other therapies. Talk to your doctor about a strategy that is right for you.

Menopause is inevitable for all women, but everyone experiences it differently. In general menopause happens as a result of the ovaries no longer providing estrogen for our bodies. This could be a natural result of aging, or because the ovaries have been removed, or have shut down because of the effects of chemotherapy or radiation.

Symptoms of menopause can include hot flashes, night sweats, vaginal dryness, trouble sleeping and mood disruptions. These symptoms have an even worse impact on quality of life when they are “premature” (happen in young women) or occur as a direct result of cancer treatment. Also, women who have already gone through natural menopause when they receive their cancer diagnosis can have new or recurring symptoms as a result of treatment.

The most effective treatment for menopausal symptoms is estrogen replacement treatment, but this is not a safe option for every woman. Sometimes it is safe to use small amounts of estrogen locally (to the vagina, for example) because your body won’t absorb too much of it. Your doctor can help you understand the risks and benefits of hormone replacement treatment as it relates to your specific cancer diagnosis and other health history.

Hot-flashes are the most common bothersome symptom for women and can be treated with non-hormonal medications prescribed by your healthcare team. Women have also benefited from exercise, hypnotherapy and acupuncture. There are also over-the-counter supplements available for hot flashes, but some of these can act like estrogen in the body, so you should talk with your doctor about these options before trying them.

It’s important to know that menopause is also associated with osteoporosis (poor bone density) and heart disease. You should talk with your doctor about how to monitor your body for these things. A healthy diet with plenty of calcium and vitamin D, and a regular exercise routine can help your body prevent both bone loss and heart disease.

Lymphedema is a swelling of a body part that happens when lymphatic fluid gets backed up. Lymphedema can happen when lymph nodes are removed at the time of surgery or lymphatic vessels are scarred from radiation treatment. If you have had one or more of these treatments, you should know the symptoms to watch for, but there is no reason to restrict your activity. In women with gynecologic cancers, the body parts most likely to be affected are feet, legs, groin, genitals or lower abdominal wall. Symptoms can range from a body part feeling heavier than usual or appearing swollen. If it goes unnoticed, lymphedema can progress to more significant swelling and skin changes that make activity difficult.

Lymphedema is usually diagnosed within a year or so of finishing treatment, but it can also happen years down the road. You should notify your healthcare team if you notice new swelling, especially if it is on one side of your body more than the other. Treatment for lymphedema is most effective if the symptoms are caught early, and therapies range from compression garments to special types of massage and physical therapy.

Being diagnosed with a gynecologic cancer can impact a woman’s sexuality and how she experiences intimacy in a number of ways. Women may experience changes in their body image, a decrease in libido or sexual desire, and the stress of diagnosis and treatment can put a strain on partner relationships. Treatments themselves, like radiation and some surgeries, can result in anatomic changes to the vagina or vulva that may make sexual encounters physically painful or otherwise unsatisfying. Treatment for gynecologic cancers also may induce menopause, causing vaginal dryness and other hormonal changes, and many medications have decreased libido as a side effect.

It is very common to experience these symptoms, and we encourage you to talk with your doctors about when to have sex and how your treatment may impact your sex life. Open communication with your partner is also important.

You may ask your healthcare team for a referral to a sexual health specialist, many of whom tailor their care to cancer survivors. These specialists may include gynecologists, oncologists, psychologists, physical therapists or primary care providers, and your healthcare team should know of specialists near you.

Fertility for a woman refers to the ability to get pregnant and deliver a baby. Having a cancer of a female reproductive organ (gynecologic cancer) can directly affect the function of those organs, affecting a woman’s ability to conceive or carry a pregnancy. Surgeries that are necessary for effective treatment of gynecologic cancers often remove reproductive organs. Chemotherapy and radiation can both affect the function of the ovaries and uterus (womb). If you are a woman of reproductive age, it is important to talk with your doctor about how your diagnosis and treatment may influence your fertility, and what steps you can take to preserve some or all of your fertility. This may involve referral to a reproductive specialist, or a gynecologist who specializes in assisted reproductive technologies. Here are some of the options that may be helpful you, depending on your diagnosis:

• Fertility sparing surgery for cancer
• Embryo freezing
• Cryopreservation of eggs or ovarian tissue

The best time for a consultation with a reproductive specialist to understand your options for fertility preservation is before you start your cancer treatment. However, innovations in the field of assisted reproductive technologies are ongoing, and women who have completed their treatment may still benefit from a consultation. Talk with your healthcare team about your options and whether you would benefit from consultation.

Palliative care refers to healthcare that is focused on alleviating symptoms and helping people feel better. In cancer care, this means treating symptoms of the cancer as well as toxicities or side effects from the treatment. While the words “palliative care” sometimes make us think of end-of-life care, the truth is that access to palliative care early in cancer treatment not only helps women feel better, but also live longer. Hospitals and cancer centers often have teams of doctors and other clinicians dedicated to a palliative care service. Talk to your doctor about whether a referral is right for you.

Some treatments for gynecologic cancer can cause side effects that may change the way you feel about your body or make it difficult to enjoy intimate or sexual relationships. Which side effects you experience depend on your treatment course. You may experience some or none at all. Being aware of the possible side effects may help you anticipate them and learn ways to cope.

Possible side effects include:

• Hair loss. A common side effect of chemotherapy, hair loss is usually temporary. Still, it can be difficult to accept and change the way you feel about your body.
• Vaginal changes. Some forms of treatment, such as hysterectomy and radiation therapy, may cause dryness, shortening, and narrowing of the vagina. These changes can make sexual activity uncomfortable. Using an over-the-counter vaginal lubricant or vaginal moisturizer may help you feel more comfortable. Your treatment team may also recommend a vaginal dilator.
• Reduced sexual desire. The stress and fatigue you may experience during cancer treatment may cause you to lose interest in sex for a period of time.

Tips for coping

Talk with your treatment team. They can provide advice based on your individual situation, so it is very important that you talk honestly with them. You may want to ask:

• How will my treatment affect my sexuality?
• Will these effects be temporary?
• Are there other treatment options that might lessen these effects?
• Do you have suggestions about how I can deal with the effects of treatment on my sexuality?

Communicate with your partner. Cancer can strain both partners in a relationship. Talking about the sexual and emotional effects cancer has on your relationship can be difficult. But you may find it easier to work through the challenges if you talk about them. Be prepared to share your own feelings and to listen to what your partner has to say. A sexual health counselor or specialist may be helpful to navigate these conversations. A sexual health clinic may be available at your cancer institution.

Shift your focus to intimacy. Sexual intercourse is only one part of intimacy. You may find that touching, kissing, and cuddling are equally fulfilling.

Be patient with yourself. Understand that a return to a sexual relationship may take time. Your treatment team can tell you if and how long you should wait to have sex after treatment. It may be longer before you feel emotionally ready. Give yourself the time you need.

Keep an open mind. Having an open mind and a sense of humor about ways to improve your sexuality may help you and your partner find what works best for you.

A cancer diagnosis can impact you in many ways beyond the actual staging and treatment of the disease. As you schedule appointments with your gynecologic oncologist, you might have questions about various topics related to your health. This web page covers pain management during your hospital stay and postoperative recovery at home.

Preparing for surgery

Undergoing surgery can be a stressful experience for many patients. Some patients may fear that cancer will be found during the surgery while other women are undergoing surgery for a new diagnosis of cancer. Regardless of the situation, the weeks leading up to surgery can seem like a whirlwind of information. You may be worried about complications or recovering from surgery. Finally, you may fear being in pain and hurting. All of these thoughts, while stressful, are normal and understandable. This document will provide some information on helping to control your pain as you recover from surgery.

Knowing your pain management options

These are some of the methods your doctor may use to control your pain.

• Ice packs applied to your abdomen or incision are a great way to alleviate pain and reduce the amount of pain pills you’ll need.
• Acetaminophen (Tylenol®) reduces one of the inflammatory pain pathways in your body. This medicine can be taken around the clock to provide some continuous pain relief. Be careful if you have liver disease.
• Non-steroidal Anti-inflammatory Drugs (NSAIDs) such as ibuprofen (Motrin® and Advil®) or Toradol, are medicines which also work on an inflammatory pain pathway. They can also be taken around the clock to provide a baseline of pain control. Try alternating your dose timing with acetaminophen. Be careful if you have gastrointestinal ulcers or kidney disease.
• Opiates (Oxycodone, Dilaudid, Percocet) are stronger pain medications. These have addictive properties and overdose risks so should be used with some caution but are generally considered safe when used for severe pain. You should use these for the shortest amount of time after surgery. Trying the other medicines mentioned above first can reduce the number of opiates you need to take.
• Patient-controlled analgesia (PCAs) is sometimes used immediately after surgery. This is a pump controlled by you to deliver opiate pain medicine intravenously at low doses.
• Transverse abdominis plane (TAP) block is a procedure performed by the anesthesiologists prior to your surgery to numb some of your immediate post-surgery pain.
• Spinal anesthesia is a method of delivering long-acting pain medication prior to your procedure to control immediate post-surgery pain. It may also be called “intrathecal” analgesia. Some hospitals may also perform epidural pain pumps. These procedures are performed by your anesthesiologists.

Opiate guidelines

• Safely store opiates away from children and young adults
• Don’t take opiates with alcohol or medicines like sleep aids
• Never share or borrow pain medications
• Opiates may cause: Sleepiness, confusion, constipation, nausea/vomiting, itchiness
• Don’t take opiates for reasons other than pain

What to do with unused opiates

To minimize accidental consumption or misuse of medications, the US Food and Drug Administration (FDA) and the Environmental Protection Agency (EPA) recommend removing medications from the home as soon as they’re not needed. Some cities do not allow flushing of medications down the toilet because of their potential to contaminate waterways.

Even if your town allows flushing away unused medication, it is preferable to return unused meds to a “take-back” program. You can find a disposal center by contacting a local pharmacist or going to the US Department of Justice Drug Enforcement Administration website. The FDA has also developed a list of medicines you should flush when they are no longer needed and take-back options are not readily available.

Don’t be afraid to ask questions

Every patient experiences pain differently and your medications will need to be adjusted to meet your needs. If you are having discomfort, feel that your medicines aren’t working, or have questions about your treatment, please make sure and talk to your doctor. The information presented in this is an educational resource is not a substitute for the direct care that your doctor will provide.

Additional resource:

Food and Drug Administration Safe Disposal of Medicines

It is uncommon for women under the age of 40 to be diagnosed with a gynecologic cancer, and it is even more rare for it to happen to a young woman under the age of 25. But it does happen, and these young women face a unique set of challenges during their treatment and in planning survivorship. If you are an adolescent or young adult dealing with a gynecologic cancer, treatment really impacts your future… your fertility, your education, your career planning, your life. And you may not relate to other patients around you in the chemo unit or in a support group. Some cancer centers have AYA programs designed specifically to meet your needs. Ask your healthcare team about services tailored just for you.

Survivorship plan: For months now, you have focused on getting through cancer treatment. Now what?  It’s time to sit down with a member of your cancer care team to understand what you have been through and how to advocate for your health going forward. In this visit you should receive information that summarizes what kind of cancer you had, the treatment you received and how both may impact your health in the future.

You undoubtedly have more doctors now than you did before, so it’s helpful to clarify the role your oncologists will play, and the role of your primary care doctor. It is important to maintain a relationship with your primary care doctor to continue your preventive health care and tend to other health needs.

Surveillance: When you have completed your treatment, your doctor will lay out for you a strategy for cancer surveillance, which is how you and your team will keep an eye out for a recurrence of the cancer. This discussion may happen at the time of your last scheduled treatment, or during a dedicated survivorship visit as described above. You will learn about the signs and symptoms that you should report to your doctor, as they may signal a return of the cancer. The specific symptoms and plan for surveillance depend upon the kind of cancer and what stage it was at diagnosis. Your surveillance plan will include regularly scheduled visits with members of your care team for an assessment and physical exam and may also include blood tests or radiology studies, depending on the situation. Talk with your doctor about a surveillance plan that makes the most sense for you.