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Everyone who has received a diagnosis of mesothelioma or any other type of cancer looks forward to the day when doctors declare them free. In the old days, some oncology wards used to have patients ring a bell when they finished their last chemotherapy infusion or received the report of a CT scan that did not show any sign of a tumor. Finishing your cancer treatment is not the end of the story, though. Life as a cancer survivor is different from how it was when you had never experienced cancer or its treatment. Besides this, there is always the possibility that your cancer will come back, or even that you will get a different kind of cancer. After your mesothelioma has gone into remission, you will undergo routine bloodwork to look for tumor markers and other possible signs of cancer; if the results of your blood tests show anything worrisome, your doctor will order additional tests. Survivorship clinics can help you cope with the knowledge that can never really be sure that your mesothelioma is gone forever and can advise you on what to do if your cancer recurs.
What Does It Mean When Cancer Recurs?
Cancer recurrence is when cancer cells become detectable on a biopsy after the patient has gone into remission. A cancer diagnosis is considered a recurrence if the patient has ever had cancer before, whether the patient went into remission only a year ago or has been in remission for decades. Oncologists categorize cancer recurrences based on the area of the body where the recurrent cancer is detected. A diagnosis of cancer recurrence will fall into one of the following categories:
- Local recurrence – The tumor is on the same organ or part of the body as the previous tumor. In the case of a patient who previously had liver cancer, this means that the new tumor is also on the liver. In the case of pleural mesothelioma, a local recurrence means that the new tumor is on the pleurae.
- Regional recurrence – The tumor does not occur in the exact same location as the original tumor, but it is close enough that doctors conclude that the cancer cells spread through direct contact instead of by circulating in the bloodstream. For example, the recurrence might be in a lymph node adjacent to the site of the previous tumor. If pleural mesothelioma recurs within the chest cavity, it is considered a regional recurrence.
- Metastatic recurrence – A recurrence of cancer is considered metastatic if it occurs in a part of the body far from the original site. For example, if the original cancer was found in the lungs but recurs in the brain or intestines, it is considered metastatic. A metastatic recurrence of pleural mesothelioma is when cancer recurs anywhere outside the chest cavity.
The symptoms of a recurrence of mesothelioma are usually similar to the symptoms that patients experienced in the weeks and months leading up to their original diagnosis. For example, night sweats are a common early symptom of mesothelioma, both in the case of primary disease and of recurrences. You might also experience cough, shortness of breath, unexplained weight loss, or unexplained fatigue. You should contact your doctor promptly if you think that your symptoms could indicate a recurrence of mesothelioma, even if it has only been a few months since your last set of tests showed that you were still in remission.
How Common Is Recurrence in Patients Whose Mesothelioma Has Gone Into Remission?
Before the advent of doom scrolling, if you were experiencing a craving for fear and trepidation, you had to content yourself by typing medical questions into a Google search. Anyone who was looking for a good fright could type “What are the chances of cancer recurring?” Those snippets on Google don’t tell the whole story. For one thing, the data are based on old studies, or else they consider old and new data together. Today’s cancer treatments are much more effective at preventing recurrences of cancer than the treatment protocols that were standard a decade ago, or even earlier. Therefore, you will find more encouraging news if you search for information about the percentage of recurrences in cancer patients who have undergone treatment for a primary diagnosis of cancer in the past five years. Even better, read individual studies that followed a group of patients for a certain number of years after treatment. These studies will be specific about the kind of cancer the patients had, the treatments they received, and what kinds of recurrences they experienced. (This is the beauty of survivorship medicine.)
Furthermore, the rate of recurrence varies widely from one type of cancer to another. Bladder cancer has a recurrence rate of about 50 percent. The rate of recurrence for childhood leukemia and for certain types of breast cancer is less than 10 percent. Meanwhile, glioblastoma, which is a type of brain cancer, has a recurrence rate of almost 100 percent. For almost every type of cancer, the treatment protocol and the stage at which the cancer was diagnosed affect the chances that cancer will recur.
Until recently, malignant mesothelioma had a very high rate of recurrence; local recurrences are the most common type of recurrence. That rate has decreased in recent years, however, and there are several reasons for this. First, treatments have become more individualized, so doctors choose the best protocol for your individual case. It is no longer just a question of yes or no regarding chemotherapy. For example, in the old days, doctors used to assume that they had gotten rid of the entire tumor if they were able to remove it surgically and no remaining cancer cells were visible, but local recurrences were very common. Today, they apply radiation or chemotherapy to the site where the tumor was removed, to ensure that they can catch microscopic cancer cells that they were not able to remove surgically.
What Can You Do to Prevent Your Cancer From Recurring?
Whether your cancer recurs is largely outside your control. Of course, it is possible to follow your doctor’s instructions closely during the treatment. If your doctors give you a choice between two or more courses of treatment, it is important to make an informed decision. Once you have finished your treatment and your cancer is in remission, it is important to keep follow-up appointments for bloodwork, diagnostic imaging, and any other follow-up testing your doctors recommend.
Living With Uncertainty
Some people are able to remain calm during very stressful experiences and take things day by day, but the anxiety really gets to them once the immediate danger is passed. You might find that, when you were undergoing treatment, you spent your nights looking forward to talking to the friendly nurses in the oncology clinic and drinking tea with your spouse on the deck of the house you rented for a few months to be closer to the clinic, but now that you are in remission, you lie awake at night worrying about whether your cancer will come back and how horrible it will be if it does. It is not only cancer survivors themselves who experience this post-treatment anxiety. Close family members can also experience a surge of anxiety once the patient has finished treatment and the family is no longer in crisis mode. For example, perhaps your daughter seemed to have an easy time with the routine of driving you to doctors’ appointments and then dropping you off at home, returning shortly thereafter with her children and a family-sized box of chicken nuggets from your favorite fast-food restaurant, even though you could only eat a few bites. Now that you are finished with treatment, though, she seems to worry about the smallest things, or maybe she seems distant, not talking to you at all except when you are the one who calls.
There is no right or wrong way to feel about having cancer or being in remission. If you worry that every ache and pain is a sign of a recurrence of mesothelioma, it is your right to contact your doctor and ask if your new symptoms are a cause for concern. Likewise, some people decide that once is enough with chemotherapy; they might decide that, if cancer comes back, they will have surgery if possible, but they will just survive as long as they can without chemotherapy. This course of action was more common in the days when the side effects of chemotherapy were more debilitating; today, it is possible to keep much more of your hair, energy, and appetite during chemotherapy than it was 40 years ago. Despite this, people sometimes decide after multiple experiences with cancer and chemotherapy that enough is enough, and they would rather just live with cancer than endure more treatment. For example, Steve Jobs, the founder of Apple, eventually decided to forgo treatment when his pancreatic cancer recurred several times between his initial diagnosis in 2003 and his death in 2011. Likewise, the film critic Roger Ebert died of metastatic cancer in 2013, having survived 11 years since his initial diagnosis of thyroid cancer in 2002 and eventually deciding to stop treatment.