The process of testing before doctors arrive at a diagnosis of malignant mesothelioma is long and exhausting. Once you begin treatment, you will probably feel a combination of fear and relief. You might find it reassuring to monitor your response to the treatment; the lab tests can show you that there is less cancer in your body than there was before even if you do not physically feel better; you might even feel worse than you did before you started treatment. The ongoing process of testing that you will undergo during treatment is a lot like the tests that you had before your diagnosis and when your medical team was trying to arrive at a treatment plan for you; under ideal circumstances, every set of tests you undergo during treatment will have better results than the previous one. Once you receive a cancer diagnosis, though, you can never really be sure that the cancer is gone forever. The ongoing testing enables doctors to catch any recurrence or metastasis of cancer early, when it is most treatable.
What Is Disease Response?
When you attend a doctor’s appointment after undergoing tests to track the progress of your treatment, you can expect to hear at least one of the following terms:
- Complete response – Also known as remission, complete response is when no cancer is detectable in your body. No tumors appear on imaging scans, no cancer cells can be found in tissue samples, and your blood tests do not give any indication that would lead doctors to suspect that cancer is present. This is as close as you can get to being cured of cancer. Remission is a more appropriate term than cure, however; once you have had cancer, there is always a possibility that it could come back.
- Partial response – This means that the treatment is making progress, and the cancer is getting smaller. Doctors declare that a patient is showing a partial response to treatment if the cancer has shrunk to less than or equal to 50 percent of the size it was when treatment began. If you have a partial response to chemotherapy, it could mean that doctors are ready to surgically remove the rest of the tumor, or they might just decide to continue with chemotherapy until the tumor is no longer detectable.
- Stable disease – This means that the tumor is within 50 percent of the size it was when you began treatment. If it has grown or shrunk, it has not done so by much. Depending on the type of cancer and the treatment goals, the doctors might decide to do surgery to remove all or part of a tumor that is not changing in size. If the tumor is inoperable, doctors may change the chemotherapy drugs or increase the dose. If the tumor is inoperable and the goal of chemotherapy is simply to reduce pain and other symptoms that would occur if the tumor were to press on other organs, then stable disease can be considered a successful outcome.
- Progressive disease – This means that the cancer is growing or spreading, even during treatment. The next step could be to change treatment plans or even to stop chemotherapy if it appears that no treatments are likely to work.
How Do Doctors Monitor Patients’ Response to Treatment?
The tests that doctors perform when monitoring the success of a patient’s treatment are similar to the tests they do before beginning treatment. These are some tests you might have both before and during treatment:
- Blood tests – Doctors measure white blood cells, red blood cells, and platelet counts in cancer patients before treatment to predict how well the patient will tolerate the proposed treatment. They will repeat these tests during chemotherapy to see whether you need supportive treatment or whether they need to adjust the chemotherapy medication doses. If you underwent blood tests for tumor markers before your diagnosis, your doctors might also repeat those tests during your treatment, especially to see if you are really cancer-free after the surgical removal of a tumor.
- Diagnostic imaging – Imaging tests and CT scans are usually the first thing that makes doctors suspect that a patient has mesothelioma; these images can show the size and location of the tumor, albeit not with perfect accuracy. You might have to repeat these images after a certain number of chemotherapy sessions to see if the tumor is getting smaller.
- Tissue cultures – Doctors may test your peritoneal fluid to see if it contains cancer cells. They might also take biopsies from areas of tissue that look like tumors might be developing on them.
What Should You Do If You Develop New Symptoms?
If you develop new symptoms, even if they seem unrelated to the symptoms you experienced just before your mesothelioma diagnosis, you should alert your doctor immediately. They might be side effects of chemotherapy that had a later onset than the symptoms you experienced when you started treatment. Your medical team will do thorough investigations to see whether the cancer has returned or spread. If the symptoms turn out to be treatment-related, your doctors can help you manage them.
How Can Doctors Tell If a Mesothelioma Surgery Was Successful?
When doctors perform open surgery to remove a cancerous tumor, they can usually remove the entire tumor; in other words, they can remove all the parts of the tumor that are visible. Surgeons try to cause as little damage as possible to healthy tissue, and since cancer cells are microscopic, the possibility remains that a few cancerous cells remain at the margins of the tumor that was removed. To prevent a new tumor from growing and to stop the cancer from spreading, your doctors might apply radiation or localized chemotherapy to the site of the surgery while you are still under anesthesia. They might even give you a few sessions of systemic chemotherapy as a precaution. The only way to be sure that they got rid of the entire tumor is through follow-up imaging tests and blood tests several weeks later.
Complete removal of the tumor is only one measure of the success of cancer surgery. An equally important purpose of mesothelioma surgery, whether it is pleurectomy decortication (PD) or extrapleural pneumonectomy (EPP) is to make it easier for you to breathe. Getting used to breathing after the removal of part of a lung, or even after the removal of an entire lung, takes some practice. Your recovery will probably include some sessions with a pulmonary physical therapist.
Will Your Doctors Change Their Minds About Your Cancer Treatment?
Cancer treatment is always a work in progress. Your doctors will monitor you after every chemotherapy infusion; at the beginning, they might even keep you in the hospital overnight to make sure that you do not have any severe adverse effects. You will have frequent blood tests to see if you need dietary supplements, blood transfusions, or any other type of supportive therapy to enable you to tolerate the treatments better. If your side effects are severe, and especially if your white blood cell count is low, your doctors might reduce the doses of your chemotherapy drugs, even if this means that your treatment will take longer than your doctors originally planned. Your doctors might also reduce the frequency of chemotherapy infusions or the doses of drugs given at each infusion if the tumor shrinks faster than your doctors had expected. Remember that the goal of cancer treatment is to keep you as healthy as possible, not just to get rid of the cancer.
Success Is a Relative Term
Every patient is unique, and your doctors are treating you, not merely infusing drugs into a cancerous tumor in your body. Doctors who are practicing medicine ethically will not give you false hope or promise you miracles. Even after you finish treatment, you may not feel the way you did before you began experiencing symptoms of mesothelioma. You might not be able to go back to work after you complete your treatments; mesothelioma could make it so that early retirement is the only feasible option.
Likewise, you always have a say about which treatments you are willing to undergo. Doctors cannot administer any treatments without the patient’s consent. If you are too ill to make decisions about your care, a family member that you have appointed as your healthcare surrogate will communicate with doctors on your behalf. Soon after your diagnosis, you should choose a family member (or a lawyer, if you do not have any family members to whom you feel comfortable assigning this role) to be your healthcare surrogate, and you should discuss with them what you would want to do about your treatment under various circumstances. For example, some patients decide that they do not want to go through chemotherapy again if their cancer recurs after they finish the treatment prescribed after their initial cancer diagnosis. This is one of the most painful decisions a person can make, but you should talk about it with your family early on, so that you don’t end up with family members feuding, when you are seriously ill, about whether continuing your treatment is making your remaining time on Earth better or worse.