Concern that your cancer has recurred will stay with you for a long time. Every time you feel an extra twinge, you may worry that the cancer has returned and has now spread. Understanding the risk of recurrence, making sure to follow up regularly with your doctor, and knowing what signs to look for can help you manage these fears.
After you have finished treatment, you will enter "surveillance." This doesn't mean that someone in a trench coat will follow you around, but rather that you will have regularly scheduled appointments with your gynecologic oncologist. If you had radiation, you will likely also have follow-up appointments with your radiation oncologist. Usually, you will have an examination every 3 months for 2 years and then every 6 months for another 3 years. After 5 years, you
"graduate" to yearly follow-ups. A pelvic examination and a Pap smear are usually sufficient to check for recurrences. Imaging studies (such as CAT scans) may be performed, but their usefulness is unclear.
Most women who are going to have recurrences experience them within the first 2 years after diagnosis. The risk of recurrence is higher the more advanced your cancer was at the time of diagnosis. Recurrences can be located near the initial cancer (local) or in a new location (distant).
Recurrences can present with vaginal bleeding. You should notify your doctor of this development as well as blood in your urine or bowel movements. Constant pain in your side (flank), where your kidneys are, can be a sign that recurrence has blocked the tubes that lead from your kidney to your bladder. Tell your doctor if you have flank pain that persists more than a few days. Cervical cancer can also recur in bones, which usually causes pain. If you have any pain that remains intense over several days, you should let your doctor know about it.
Treatment of recurrent cervical cancer depends on both the location of the recurrence and your prior therapies. If your recurrence is within the pelvis, your doctor will typically give a type of treatment that you have not had yet. If you had surgery in the past, radiation (with weekly chemotherapy) is usually given. If you have already had radiation to the pelvis, however, chemotherapy or surgery is usually recommended. Patients often ask why they can have surgery and chemotherapy multiple times but can only receive radiation to an area once. There is a limit to the amount of radiation the body can safely tolerate. In order to kill the cancer cells, the radiation oncologist gives enough radiation to reach that limit. Your body always "remembers" the original radiation, and if you receive additional radiation, you greatly increase your risk of significant complications. So for cervical cancer patients who have a recurrence after radiation, chemotherapy is typically recommended. Surgery may be a possibility but only in specific situations.
If a recurrence is local, relatively small, and does not extend to the pelvic bones, and if there is no other evidence of disease elsewhere, an exenteration may be an option. The surgery section in Chapter 3 offers more details about the exenteration process.
If the recurrence is blocking one of your ureters (the tubes that run from your kidney to your bladder), you may need a percutaneous nephrostomy. In this procedure, a doctor inserts a tube through the skin of your back and into your kidney. Your urine then drains into a bag.
Distant recurrences are also called metastases. Cervical cancer can spread to lymph nodes, lungs, and bones, among other places. This does not mean you have lung or bone cancer but rather that cervical cancer cells have gone to those areas. If the recurrence is only in one area, radiation to that area and/or surgery to remove it might be possible. Chemotherapy is another option. Many different chemotherapy drugs have been tried, and about 15-40% of women will see some response with chemotherapy. Treatment with two chemotherapy medications at the same time may increase the chances of a response but may also increase the side effects. Each type of chemotherapy has a different schedule and different side effects, so you need to talk with your doctor about which chemotherapy you would be receiving.
Another option for women who have recurrent disease is a clinical trial (see Chapter 3 for more about clinical trials). If you are interested in participating in a trial, you should ask your doctor if there are any available at your hospital. If not, the National Cancer Institute is an outstanding resource, or you can ask your doctor to help you find a research trial.
In general, recurrent disease is more challenging to treat than when it is first diagnosed. Early-stage cervical cancer is curable in the majority of cases. Locally advanced cervical cancer (Stage II and III) can sometimes be cured. Occasionally, cervical cancer recurrences can be cured with either radical surgery or radiation. However, the typical experience with recurrent disease is unfortunately not very good. While recurrent disease can sometimes be controlled, the vast majority of times the cancer returns or progresses at some point. Despite the very limited chance of a cure, treatment for recurrent disease is reasonable because it can lengthen your survival and improve your quality of life.
My cancer Isn't curable— What Now?
It is devastating to hear that your cancer has spread. Learning that your cancer is not curable is terrifying and will require a shift in how you think about your treatments.
When cervical cancer has spread, the goal of treatment shifts from cure to control. As mentioned previously, the outcome for primary cervical cancer is actually very good, with cure rates of approximately 70%. However if the cancer does recur, the option for cure is usually no longer available. The exception to this rule is a local recurrence (at the top of the vagina), treated with an exenteration.
Therapy attempts to control the cancer for as long as possible while still maintaining good quality of life. It is important to have a frank talk with your doctor about what to expect. Metastatic disease can often be controlled for a period of time, but it cannot be cured. It can be difficult to hear, but having realistic expectations is important so you can make informed choices about treatment options and mentally prepare yourself for the road ahead. You shouldn't give up hope. Some women live a long time with recurrent disease—treatments can work better than expected and symptoms that are very bothersome can be treated—but you may need to shift the focus of your hope and plans.
Your physician is there to be supportive and to maximize your quality of life. Doctor visits about recurrent disease are challenging. Your physician is present to provide emotional support in what is obviously a difficult time. In addition, your doctor wants to help form an appropriate plan of action based not only on the extent of recurrent disease, but also on your view of what is the right approach. Sometimes it takes more than one visit to achieve both of these goals.
There is no right or wrong way to treat recurrent or metastatic cancer. Your choice of therapies depends on your priorities. What might be right for one patient may not be right for another. The pathway you choose is up to you, and as your treatments proceed, there are always opportunities to reassess whether that path is still right for you.
The goal of the most aggressive treatment path is to give you as much time as possible. The stress is on quantity of life. Patients pursue treatments no matter how difficult they are, even if there is only a limited possibility that they will buy them some more time. Some women, especially those with young children, may prefer this as the course of treatment. Particularly when the diagnosis of recurrent or metastatic cancer has just been made, some women want to drive as hard as possible against their cancer. It is important to remember that all treatments have side effects; aggressive chemotherapy can make you feel tired and ill, and surgery can mean you are in the hospital or recovering for a long time. There is no point in taking treatment for treatment's sake if it is just making you feel sicker. But if fighting tooth and nail against your cancer is what you need to do, then be aggressive. Just make sure you reassess as you go through therapy. Part of reassessing treatment is determining the costs and benefits. How much of your time do you need to invest? How much extra time could you receive?
At the other end of the spectrum is hospice. Hospice is a philosophy that stresses quality of life over quantity of life and aims to take care of your emotional and physical symptoms. The goal is always to make sure you are as comfortable as possible. If treatment doesn't improve the quality of your time, then you shouldn't undergo it. Patients don't receive aggressive treatments such as surgery, chemotherapy, or radiation. They do receive pain medicines, antinausea medicine, and anti-anxiety medication.
In hospice programs, nurses and doctors work to make sure that your pain is controlled, that other symptoms are taken care of, and that you and your family have the emotional support you need. Hospice services can be provided in your home or in an inpatient setting, depending on what type of services you need. Unfortunately, all too often people wait until very late before turning to hospice. Hospice doesn't mean you've "given up." Hospice is both a recognition that current available treatments will not provide much, if any, benefit and an effort to focus on getting the most quality out of the time you have left once you've decided not to continue with aggressive treatment.
Discussions about hospice can be very emotional for you and your friends and family, as well as your physician, but these conversations may be among the most important you will have with your doctor.
In order to recommend hospice, your physician needs to estimate that your life expectancy is less than 6 months. Life expectancy is an estimation. No one has a crystal ball to predict the future. Some patients are on hospice for longer than 6 months. Some patients are on hospice for less than 6 months. Even if you are not yet ready for hospice, it is often very valuable to have a discussion with hospice providers. That way you can make a more informed decision if hospice becomes a recommendation in the future. Most hospice patients and families wish that they had started hospice sooner.
Between these two paths, there is a lot of room. You may decide you do not want to be very aggressive but still want to have some treatments, as long as they do not interfere too much with your quality of life. For instance, you may decide to try some chemotherapy, working with your doctor to see which type would be relatively easy to tolerate. Assess each treatment option, and decide whether the costs outweigh the benefits.
Regardless which path you pursue, it is important to have your symptoms well controlled. Some women avoid telling their doctor about symptoms for fear that the doctor will give them bad news. But if progression of your disease is causing you pain or nausea, hiding the information from your physician will not make the symptoms any better. Sharing your symptoms allows you and your physician to plan accordingly and to get your symptoms under better control. Some women also worry that taking pain medications will lead to addiction. Although you may become tolerant of your pain medications (meaning that over time you need more medication to give you the same amount of relief), patients taking medication for cancer pain do not become addicted. It is best to take pain medications on a schedule so that you stay on top of the pain, rather than letting it sneak up on you and get out of control and then having to regain control. The same is true for antinausea medications.
Although it is difficult to consider, catastrophic events can happen, especially as one approaches the end of the disease course. If the cancer progresses, it can lead to a situation where your heart stops beating or you stop breathing. Advance directives or a living will are legal documents that allow you to convey your decisions about end-of-life care ahead of time. It is important to think about whether you would want to be resuscitated or not in these situations. Many times, patients and doctors are afraid to have this discussion and wait until it is late in the course of treatment, but it is a good idea to think through what you would want and make sure that your family and your doctors understand your wishes. In the United States, if individuals stop breathing or if their hearts stop beating, we assume they would want "everything" done to save their lives. Thus we perform CPR, including electric shocks to try to restart their hearts, and intubation, which involves inserting a breathing tube into their throats. While these methods almost always work on TV, in real life, especially when people are already sick, they work much less often. And if they do "work," the patient can end up on a ventilator (breathing machine) or in the intensive care unit for a long time. Remember, you always have the option to decline CPR, and, in fact, declining life-saving methods often is a completely appropriate choice. If you do not want
CPR, let your doctors and family know so your wishes can be respected. The advanced directive is the formal legal document to explain your desires for end-of-life care. However, you can also have a conversation with your physician to explain these details. A conversation sometimes allows for a fuller discussion of all the possibilities. A written advanced directive ensures there is documentation of your desires, especially if you cannot communicate with your healthcare providers. You can also designate a healthcare proxy to make decisions for you if you are unable to do so. If you do not designate a healthcare proxy, the hospital will sometimes need to assign one. Unless you specify otherwise, your family has priority over your friends, and certain relatives have priority over others. Ideally, it is best to communicate your end-of-life preferences to your healthcare team, both verbally and in writing.
Talking with friends and family can be difficult. Often they are not as prepared for the news as you are. After all, this is your cancer journey, and you have been emotionally dealing with it since your diagnosis. Talking with young children can be especially difficult. Children are very perceptive, however, and lying to them will only breed distrust and fear. Often the hospital has a social worker who may be able to help you plan for this conversation. Other good resources are survivor support groups or your minister, if you have one. If you decide to pursue hospice care, they often can provide support and advice for family members.
Being diagnosed with recurrent or metastatic cervical cancer also will lead to a lot of emotional turmoil for you. It is difficult and painful to face your own mortality and to evaluate what you have accomplished in life, or what you have left undone. It is a time to reflect and come to peace with your life. Many people find it therapeutic to reach out to loved ones and make sure they know how much they mean to you and to extend a hand of forgiveness to those with whom you have parted ways. If you are a religious person, your minister may be able to help. The hospital social worker, support groups, and loved ones are also important sources of strength for this process.
Being diagnosed with recurrent or metastatic cancer can be seen as a rare, albeit very difficult, opportunity. We will all die, and sudden accidents can happen. In contrast, you have the opportunity to reflect, to come to a sense of peace, and to settle affairs with your friends and family.
cervical cancer in older Adults
Gary R. Shapiro, MD
The average age of women with cancer of the cervix is around 50 years. However, one in five women with cervical cancer is at least 75 years of age. Although the wide use of the Pap smear has dramatically decreased the frequency of cervical cancer in developed countries such as the United States, the older population remains at risk.
Older adults with cancer often have other chronic health problems and may be taking multiple medications that can affect their cancer treatment plan. Prejudice, misunderstanding, and limited access to clinical trials often prevent older patients from getting the timely cancer treatment they need. Older women may not have adequate screening for cervical cancer, and when a cancer is found, it is too often ignored or undertreated. As a result, older women often have more advanced cancer and worse outcomes than younger patients.
why is THERE MoRE cANcER IN oLDER people?
The organs in our body are made up of cells. Cells divide and multiply as the body needs them. Cancer develops when cells in a part of the body grow out of control. The body has a number of ways of repairing damaged control mechanisms, but as we age, these methods do not work as well. Although our healthier lifestyles have allowed us to avoid death from infection, heart attack, and stroke, we may now live long enough for a cancer to develop. People who live longer have increased exposure to cancer-causing agents (carcinogens) in the environment. Aging decreases the body's ability to protect us from these carcinogens and to repair cells that are damaged by these and other processes.
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