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The weeks and months leading up to your surgery or first chemotherapy session related to a diagnosis of malignant mesothelioma can feel like an endless slog of blood draws diagnostic imaging tests, outpatient surgical procedures under anesthesia, and even the occasional hospital stay. Once you start treatment, the monitoring continues, except when you would like to know, moment by moment, how your body is responding to the cancer treatment. It would be nice if you could watch cancer disappear before your eyes, but most of the time that you are in treatment, you just have to be patient and let the chemotherapy drugs do their job. Meanwhile, the set of tests that tells you that your cancer is in remission is a joyous occasion, but every blood draw in the coming years, where you are trying to find out whether you are still in remission or whether cancer has returned, brings trepidation. During and after treatment, mesothelioma patients receive follow-up care to help them manage their symptoms and to help doctors make decisions about what additional treatments if any, are necessary.
Postoperative Care After Mesothelioma Surgery
Surgery is indicated in some cases of pleural mesothelioma. Your doctors are most likely to recommend surgery if they are certain that the tumor has not spread past the chest cavity and if it is in a location where they can operate on it without causing irreparable damage to other vital organs. If the tumor is small enough, then you are a candidate for pleurectomy and decortication (PD), where the surgeon removes the tumor, the pleura on which it is located, and part of the lung to which the affected pleura is attached. If the tumor has spread to a lung, then the appropriate surgery is an extrapleural pneumonectomy (EPP), where the surgeons remove an entire lung and its pleurae, plus part of the pericardium, which is the membrane that covers the outside of the heart.
Following mesothelioma surgery, your doctors will leave a chest tube in place for several days. The purpose of this tube is to drain fluid from your chest. Fluid buildup in the chest impairs breathing ability; some patients who are not considered good candidates for surgery still get fluid drained from their chests, and this procedure improves their breathing capacity. Of course, if you have just had surgery to treat mesothelioma, then the fluid is not the only impediment to your breathing. You must also get used to breathing without two complete lungs. It is important to practice taking deep breaths, even when you have only emerged from surgery a few hours ago and while you are still receiving pain medication. A pulmonary physical therapist can help you get used to taking deep breaths after the removal of part of a lung or an entire lung.
The nurses caring for you in the hospital will help you get back into the habit of walking to help you maintain your physical strength. You should also go for a walk every day, if you can, once you are home from the hospital. Some patients must stay in a convalescent home for several weeks before returning home; it depends on each patient’s medical situation and the ability of family members to care for him or her at home. Even if you are released from the hospital to go home just a few days after your surgery, you will still have follow-up postoperative appointments with your doctor several weeks after the surgery. If you experience complications such as sudden pain or bleeding, fever, or worsening shortness of breath, you should contact your doctor immediately or go to the emergency room.
Monitoring Your Treatment Response During and After Chemotherapy Treatment
Patients undergo a series of blood tests to determine the correct dose and the ideal combination of drugs for their chemotherapy treatment. After two chemotherapy infusions, doctors usually perform a CT scan to determine whether the chemotherapy has stopped the tumor from growing. If the tumor is the same size as it was before treatment, or if it is smaller, this means that the chemotherapy is having the desired effect, and the patient will usually complete the course of chemotherapy infusions as planned. If the tumor is getting bigger, this means that the tumor is not responding to the chemotherapy, and the oncologists will have to choose a different treatment protocol. At the end of your course of chemotherapy treatments, you will have another CT scan. If the tumor is not visible on the scan, you will have blood tests to confirm that your cancer is in remission. If the tumor is smaller than it was before treatment but not all the way is gone, your doctors might decide to extend your treatment regimen.
All chemotherapy plans are subject to change because you will need to get bloodwork done every few weeks to check your red blood cell count and white blood cell count. Anemia and immunosuppression are common but dangerous side effects of chemotherapy. If you become too anemic or your white blood cell count gets too low, your doctors might decide to space the chemotherapy sessions at wider intervals or to lower the doses of the drugs. You might also need supportive therapies such as blood transfusions. Your doctors will likely have given you advice about managing chemotherapy side effects before you started treatment, but if you experience unexpected and worrisome symptoms, you should call your doctor.
Long-Term Follow-Up and Survivorship Medicine
Almost everyone who receives a cancer diagnosis, whether it is malignant mesothelioma or another kind of cancer, wishes for a day when they can say that their days of having cancer are in the past. Cancer treatments have advanced so much over the past several decades that the survival rate has improved substantially for almost every type of cancer. From a medical perspective, though, it makes more sense to think of cancer as being in remission than being cured. When you are in remission, it means that you have no signs of the disease that are detectable clinically or on laboratory tests. (For purposes of comparison. Most HIV patients who take antiretrovirals are in remission, meaning that the virus is not detectable in their blood, even though they still test positive for antibodies, much as they do for other viruses to which they were exposed years ago. Only a small, but growing, a number of patients have been declared cured of HIV, meaning that doctors are confident that the virus will never reappear in the patients’ blood, even if the patient never takes antiretrovirals again.)
The only way to be sure that your cancer is still in remission is through blood tests. During the first year after you finish your chemotherapy treatments, you will have blood work every few months to confirm that you are still in remission. After that, the follow-up bloodwork will become less frequent. If your bloodwork shows anything abnormal that would lead your doctors to suspect a recurrence of cancer, you will have additional blood work, as well as other tests, such as CT scans. It is not possible to confirm a cancer diagnosis or decide on an appropriate course of treatment without a tissue biopsy. Your doctors cannot simply assume that it is another case of mesothelioma and start you on the same chemotherapy drugs you took the first time.
If your mesothelioma treatment has occurred in the context of a clinical trial, then the course of follow-up treatment has been predetermined. The researchers will want to examine patients every year, or perhaps even more frequently than that, for the rest of their lives. This is because they are trying to get as much information as possible about the long-term effects of mesothelioma and its treatments.
Having to go back for blood work every year and relieve the anxiety-ridden days that led up to your initial diagnosis of malignant mesothelioma is no fun, but it is easier to bear when you consider the larger goal. The reason that you have to go through so many tests is that you are part of the first generation of long-term mesothelioma survivors. Survivorship is a fairly new field of medicine, simply because until now, there were not enough cancer survivors to enable doctors to draw generalizations about them. Even if you did not participate in a clinical trial during your original course of chemotherapy, it is a good idea to make contact with a survivorship clinic; most of them are located at research hospitals attached to universities. If your city has a university with a medical school, then there is a good chance that it has a cancer survivorship clinic. There, you will meet doctors who are very knowledgeable about the lingering effects of mesothelioma treatment and about living your best life without two complete lungs. You will also meet patients who have lived through experiences similar to yours. The longer you stay, the more people you will meet who have survived mesothelioma and other types of cancer.