Almost every piece of news you hear about your health after a cancer diagnosis or during treatment opens up a new world of uncertainty. The results of tests, whether they are bloodwork or imaging scans are rarely a simple “yes” or “no;” rather they are points on an ever-expanding flowchart of possibilities. Every result is some combination of “you still have cancer” and “you are still alive.” Even when your cancer is in remission, it only means that you do not have any detectable signs of cancer for now; it is impossible to know how long the state of remission will last. Meanwhile, you, as a patient, have a say in every step of your treatment. When you get the news that, despite the chemotherapy you have been undergoing, your tumor looks almost the same as it did when you started treatment, this can leave you feeling confounded and not knowing what to wish for or how to achieve it. Remember that you do not have to make any split-second decisions, and that you have time to discuss your decisions with your family and your medical team and even to seek a second opinion before you decide which course of treatment to pursue if your mesothelioma has remained stable after the first set of treatments your doctors have provided.
What Does Stable Disease Mean in the Context of Mesothelioma Treatment?
Some patients with malignant mesothelioma are good candidates for surgery. The most common surgeries for pleural mesothelioma are pleurectomy decortication (PD) and extra-pleural pneumonectomy (EPP). The first of these surgeries removes part of a lung, and the second removes an entire lung and part of the pericardium, which is a membrane on the outside of the heart. After one of these surgeries, your doctors can confidently say that they have removed all macroscopic signs of cancer; that means that they have removed the entire tumor, and there is no more cancer in your body, unless it is just a few cells that can only be observed by a microscope. Therefore, after a mesothelioma surgery, you are almost cancer-free. (To make sure that they can catch any remaining cancer cells at the edge of the tumor, they might also apply radiation or chemotherapy inside the chest wall during your surgical procedure.) Then you just have to focus on recovering from the surgery and getting used to breathing with only one lung.
Chemotherapy, by contrast, is a slog. Chemotherapy can make you forget all about cancer, and not in a good way. While you are actively in treatment, you are focused on managing the side effects. If your white blood cell count gets too low, you might have to delay your next dose of chemo or reduce your dose. You might take medical cannabis or prescription drugs like Zofran to reduce nausea. Only after this has gone on for several months do doctors test to see how the chemotherapy is affecting the tumor.
Most mesothelioma patients undergo chemotherapy at some point in their treatment. If they have the tumor removed through surgery, chemotherapy is a precaution to stop the cancer from spreading, and the course of treatment is not very long. Just because doctors can see a tumor on an X-ray does not mean they can surgically remove it, though. Some patients are not good candidates for surgery; if you have underlying heart or lung disease, the risks of mesothelioma outweigh the benefits, and the surgery will probably make you much sicker. Therefore, shrinking the tumor with chemotherapy is the only option. For some patients, the best course of action is to shrink the tumor with chemotherapy first and then, once it reaches a manageable size, remove it through surgery.
The success of chemotherapy, or lack thereof, is described as any of the four outcomes. A complete response means that the cancer is in remission and is no longer detectable. Partial response means that the tumor is less than 50 percent of its original size as measured right before treatment started. Stable disease means that the tumor is only slightly smaller or slightly larger than it was at the beginning of treatment. Progressive disease means that the tumor is substantially bigger than it was when treatment started, or that the cancer has also spread to other parts of the body.
Following Up With Your Medical Team About the Effects of Your Treatment
Cancer treatment plans are always subject to revision; doctors always adjust the timing and dosage of chemotherapy infusions based on the patient’s side effects and disease response. To find out how much cancer, if any, is in your body compared to how much was there before you started treatment, your medical team will repeat the tests that originally led them to diagnose you with mesothelioma; for example, you will have more blood tests, X-rays, and CT scans. The imaging tests will show your doctors how big the tumor is after you have undergone chemotherapy; they will compare those images to the images they took before you started treatment. If you show a complete response, you are almost finished with treatment; your doctors will probably just ask you to come back in a few months to make sure that you are still in remission. If you show partial response, they will probably continue to follow your current treatment plan.
Your Options If Your Mesothelioma Remains Stable During Chemotherapy
Do not despair if, after several months of chemotherapy, your doctor tells you that your mesothelioma is showing stable disease. This is a fairly common outcome with mesothelioma. Despite mesothelioma patients who only do chemotherapy have longer survival times than those who only do surgery, it is not easy to make mesothelioma go away quickly through chemotherapy.
Your doctor might advise you to continue with your current chemotherapy regimen if you are showing stable disease after chemotherapy. If you are able to breathe easily and you are not suffering terribly from cancer pain or chemotherapy side effects, then the status quo might be just what you need. With mesothelioma, as with many chronic diseases, the goal is to manage symptoms and live with the disease. It could be that your current treatment plan is achieving that goal.
Of course, it is possible that there is another course of treatment out there that would lead to a better response. Whether or not you investigated the possibility of enrolling in clinical trials before you began treatment, it is a good idea to look for clinical trials after your first attempt at chemotherapy yields less than ideal results. There might even be clinical trials that are specifically looking for patients who did not respond well to the course of treatment that you just finished. Likewise, you might have found out about a clinical trial shortly after your initial mesothelioma diagnosis but decided not to enroll in it because of the travel required. If the treatment available close to home did not work, you might now feel that you have nothing to lose by traveling to another city for experimental mesothelioma treatment.
Some patients who undergo chemotherapy, only to find out that the mesothelioma tumor is the same size it was when they started, decide that they do not want to go through any more chemotherapy treatments. They might feel that the cure is worse than the disease, and they have had enough invasive surgeries and powerful pharmaceutical drugs with severe side effects. If you stop chemotherapy, it is likely that the cancer will spread. Before you make this decision, you should have an honest discussion with your doctor about what it is like to live with cancer but not to try to slow its progression with chemotherapy, and about how to manage symptoms.
Factors That Influence Your Decision About Responding to Stable Disease
There are no right and wrong answers when it comes to decisions about mesothelioma treatment; you are the one who has to live with the disease and with any side effects associated with chemotherapy or other treatment modalities. All of the tests that your doctors perform before and during your treatment will give them a detailed picture of how much you stand to benefit from various treatments and how well you are likely to tolerate them. If your cancer is not getting much smaller after chemotherapy, you should seek a second opinion about what you might do differently to get a better response. Your decision will depend in part on whether clinical trials are available and what kinds of new treatment protocols they are offering.
Money should not be the deciding factor in determining which treatments you can pursue. Remember that mesothelioma is a preventable disease, and there are mesothelioma lawyers who devote their entire careers to helping patients access money to pay for mesothelioma treatment. Your doctors can refer you to legal services to help you pay for mesothelioma treatment. Even if you have to travel or temporarily relocate your family for treatment, there is always a way to pay for it.