Disclaimer: I am Stage 3b, NED (No Evidence of Disease) for 5 years now, so keep in mind that this perspective is from someone who does NOT have Stage IV cancer. Perhaps this allows me to have a more detached view, one that’s not emotionally loaded, on the topic.
Stage IV CRC is not a uniform thing; it can be with very low disease burden (one tiny distant met), or it can be extensive disease with large mets in multiple organs and peritoneum. So the chances of being NED and staying NED varies very widely.
As you can imagine, with one or very few metastatic lesions in the lung or liver, if they are resectable, then the goal is to shrink them (and the primary tumor) with chemo and get all out with surgery. Then you may or may not get follow-up chemo, and if nothing else shows up in 5 years, you are almost considered cured, though being recurrence-free for 10 years is considered really cured. This is one extreme.
Then there are people who get diagnosed at Stage IV with extensive disease, multiple mets in multiple organs. A small % of them will respond amazingly to chemo and most mets may shrink thus allowing them to get to surgical resection or local treatment for the larger lesions. In the remaining patients, outcomes tend to vary depending on their mutations, how well the tumors respond to chemo, how much different lines of treatment can be recycled etc. Most patients are able to manage their disease with standard-of-care treatments for 2-5 years from their diagnosis.
Ultimately, survival depends on how well different organ systems can function despite the cancer, and side effects of various surgeries, procedures and treatments. So the goals of treatment may not be to get to resectability or NED for everyone. It may be important for each patient to figure out the long-term and short-term goals of treatment at every step.
Peaceful co-existence with stage IV disease (making stage IV cancer a chronic disease) is a great goal for a proportion of patients. In the case of slow-growing cancers, this is very much possible. In such cases, adaptive therapy, with the minimum chemo necessary to keep the disease stable, and multiple chemo breaks, and regimens that alternate chemo with targeted therapies may all help get the most mileage from all treatments and maintain organ function and body condition for more than 5 years. Getting information about the number of stage IV patients that are NED or the length of time they are NED from cancer support communities might not really give you much usable data, though it can give you hope and inspiration, which are very important on this journey.
Extended periods of time with limited disease burden, where the cancer or treatments have limited impact on your daily life is a great goal. In such cases, total elimination of disease may not be possible. But with a good treatment plan, patients can aim to continue living and thriving despite the cancer. It is critical to stay mindful of what is important to you as a patient. Closer to diagnosis, a cure may be the only goal that may seem worthwhile. As you live the stage IV life, gain experience and become familiar with treatments, surgeries, side effects, possible outcomes relevant to your situation etc, what seems worthwhile to you as a treatment goal may change. As the disease progresses despite treatment– which it will for the majority of patients, the 5-year rates of survival for stage IV CRC remain dismal at 14%– you may need to revisit the goals of care periodically and assess how to proceed.
How do you balance your search for the best treatment options with being present in your current life and enjoying it? Is being with family and spending time with them your current most important goal? Are you willing and able to enroll in a clinical trial where you need to travel and be away from your family and work? Is continuing to work as long as possible despite your cancer the most important goal for you? Do you have important personal milestones to reach–a child starting school/ highschool/college/getting married etc that is your top priority? Knowing your time may be limited, some people may want to plan ahead, while others may prefer to take it as it comes and prepare for one day at a time.
This is your life. There are no right or wrong ways to process and manage a potentially life-limiting disease. But taking the time to figure out what’s important to you may help make this journey a little less chaotic. This talk by Dr. Briscoe is very informative:
Physical activity (30 min a day, if possible), a balanced diet without energy overload, aspirin use (especially with some mutations), Vitamin D supplementation, a focus on stress-reduction etc can help maintain overall body condition and support the body as it deals with stage IV disease and treatments.
It is very important to find out the genomic profile of the tumor, and figure out reliable ways to keep track of the disease (tumor markers, ctDNA, imaging) and response to therapy, so patients can stop lines of treatment when it starts being ineffective (rather than wait for disease progression-this is especially important for people on targeted therapy, eg BEACON doublet for BRAF mutated CRC). It is good to keep in mind that all targeted therapies stop working at some point, so people need to have plans in place for when it stops working. People with mets in multiple organs on treatment long-term (over 5 years) need to ask for and get brain MRIs periodically to rule out brain mets.
Treatment strategies that take into account:
A palliative care consult (focused on side effect management & pain relief) early in the treatment course, counseling or mental health support, prompt attention and management of side-effects — ways to deal with skin issues, neuropathy, low blood counts, diarrhea, constipation, chronic pain, etc are important ways to make this difficult journey more bearable.
My very best to everyone on this journey.