Coping with an Advanced Cancer Diagnosis

Written By Michelle Bronzo
 
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The words that you never thought you would hear and change your life in an instant: “The cancer has spread.” After you recover from the mental blackout that likely occurred following these words, the next thought is, “Now what?”


In the past, receiving a stage four cancer diagnosis (also referred to as advanced cancer or metastatic disease) meant that the person had very little, if any, time left to live... A “death sentence.” The advancements in cancer research over the last number of decades have transformed advanced cancer treatment from being largely palliative in nature to that which extends life by months, years, and sometimes decades. In essence, advanced cancer is being treated similarly to a chronic condition, with periodic adjustments to the treatment plan in an attempt to lengthen treatment response, minimize side effects, and maximize quality of life. The big question then becomes, “How do I not just live, but live well with metastatic disease?”

In some cases, doctors are able to “cure” stage four cancer, a status known as “no evidence of disease” or “NED.” A vast majority of people however, will fit into the category of having to be on active treatment for the rest of their lives, meaning some combination of chemotherapy, radiation therapy, immunotherapy, hormone therapy, or follow-up surgeries. If you have an advanced cancer diagnosis - or are caregiving for someone with this diagnosis - you know how hard it can be to paint a picture of this reality for others. Family and friends are likely to be more familiar with scenarios in which either someone is cured from their cancer and no longer needs treatment, or ones in which the person has declined very quickly and died. You likely will have to educate the people around you about what it means to live with advanced cancer and that cancer will always be a part of your life. 

If you are in the first few weeks and months after your diagnosis, you may feel disoriented and have a difficult time coping. The emotional toll this diagnosis can have can be giant; you may feel sad, angry, shocked and in disbelief, overwhelmed and out of control, confused, and fearful about what is to come. It is common to think about dying and worry, “Will I die tomorrow?” Your mortality is called into question in a serious way, so this is an understandable question to ask yourself and worry about. Other people (particularly children) may be worrying about this as well, and may think it or ask you outright. As you learn more about your cancer and how to treat it, you will likely see that these feelings and fears become much more manageable. 

One thing is for certain, and that is that you will be thrust into a new world overnight. It can feel like a full-time job to deal with doctors’ visits, call insurance providers, receive treatment, diagnostic tests and bloodwork, and all the other time consuming (and energy sapping) things that come along with your cancer diagnosis. Oftentimes it is a full-time job and can make sustaining a real job challenging. I encourage you to know your legal rights and to ask your employer for reasonable accommodations and/or take FMLA from work when needed. Cancer + Careers is a great resource for this topic and navigating these kinds of delicate conversations with employers: https://www.cancerandcareers.org/en. 

One of the hardest things to adapt to is managing treatment and side effects. As you have heard on drug commercials time and time again, “Each person is different. You may experience some or all of these side effects.” A big question mark looms before treatment begins in regards to what treatment will feel like, which can create a tremendous amount of anxiety. “Will I be able to function? Will I lose my hair? Will I have enough energy to play with my kids?” Generally you will be able to find more of a rhythm and will know what to expect after you have a few cycles of treatment under your belt. For example, if you know you will feel most sick Tuesday-Thursday of your treatment week, you can begin planning around it and save plans, important meetings, etc. for days you know you will be feeling better. This will also help you determine if and when you need extra help around the house, especially if you are fatigued or not feeling well from treatment. (See my prior blog post on managing cancer-related fatigue here: https://www.michellebronzocounseling.com/blog/cancerrelatedfatigue).   

Typically, people have a strong desire to know how they are responding to treatment and if the cancer is shrinking. The months between CT scans or MRIs can be excruciatingly long, particularly if the next scan will determine a treatment path. If it were medically possible, I know that many of my clients would opt to have full body scans weekly, just to know what is happening in their bodies. Prior to cancer, you may have noticed normal aches and pains for the annoyances they are, but after your diagnosis you may find that they take on a life of their own. Is this a sign of my cancer growing or spreading? Hypervigilance of your body (scanning or “taking stock” of your body) can be a useful skill to stay attuned to any changes, but can quickly spiral to a fear-inducing place when you misattribute normal pain for cancer-related pain. I find that the two-week rule is a good one. If your pain is still there after two weeks, that might be a good time to get it checked out with your doctor. 

An important thing to ask yourself as you get more comfortable with your diagnosis is, “What is my main goal?” Do I want the least amount of side effects, even if that means reducing the dosage - and possibly the efficacy - of my treatment? Do I want to elongate my life as much as possible, even if that means more aggressive treatment and perhaps more side effects? Do I want to maximize my quality of life and spend time with family? It is important to communicate to your health care team what is most important to you so they can tailor your treatment plan to best meet these needs. 

Equally important is the question, “What is my limit?” Is there a time when treatment becomes too much or the impact on your functioning becomes too much? You would not be wed to this if and when the time came, but having an idea of what you are willing to tolerate in terms of treatment can help you make decisions about stopping treatment if you wanted to. 

The biggest psychological hurdle you will face is an existential one, figuring out how to cope with uncertainty and unknowns while also planning for the future. “Will I be alive in…” becomes a factor in trying to plan ahead. I’ve seen this time and time again, with people wondering if they should renew their cell phone contract, plan vacations, or buy big purchases like cars or homes. It can be tough to know how to balance the financial demands of treatment with living life in the present, with some people contemplating using their retirement funds early. Some wonder if they will be alive by retirement age and so elect to use the money for things that will allow the maximum enjoyment of life right now. Plan for your vacations and travel with the extra assurance of trip insurance. And as one of my group members once said so perfectly, “Buy the damn car.” 

Living with this kind of uncertainty about how much time you have left can help reprioritize things for you. What is it that I actually want to be doing? Who do I want to be spending my time with? This diagnosis marks a major crossroad in your life. Focus on what brings you the most amount of joy with the least amount of effort or hassle. Do you have friends that are high-maintenance, exhausting, or toxic? This may be a good time to move away from those kinds of relationships. 

Instead, you may choose to seek support from other survivors, particularly support groups focusing on metastatic cancer. There is no better place to find a group of people who just “get it” and know what you’re going through than a group of other people with advanced disease. Not only will it be a great source of encouragement and support, but you also will get concrete tips from the facilitators and participants about how to emotionally cope, deal with side effects, prioritize self-care, and advocate for yourself in the medical realm. I have seen groups in which the participants shared information about their oncologists, new clinical trials, treatment they are on, complementary medicine, etc., that made a real impact on what other members then asked for in their own care. If you can find a group that is specific to your cancer diagnosis (e.g., advanced colorectal cancer group), you are even more likely to benefit from the experiences of other group members. 

Don’t be afraid to solicit second and third opinions. I frequently hear my clients voice concern that seeking out other opinions will offend their primary oncologist. Know that this is a very common - and expected - practice. It’s helpful to get new eyes on your case in the event that there is another treatment path available to you. If not, and the second opinion echoes the first, you can rest assured that you are doing exactly what you need to do right now. Be your own advocate and speak up for yourself… this is your life we’re talking about!

Also remember that palliative care is an option for you, regardless of where you are in treatment. Most people think of palliative care and hospice care as being the same thing. All palliative care really means is a focus on improving quality of life and minimizing side/ effects or symptoms that are interfering with your life. People who have a stage one cancer diagnosis or heart disease or another medical condition may have a need for palliative care as well. So if you are finding yourself contending with side effects (e.g., pain, nausea, fatigue) that are not being well-controlled by your medical oncologist, you might want to consider a consult with a palliative care physician. They are really expert in knowing how to address these symptoms.  

Lastly, experiencing depression and/ or anxiety is extremely prevalent after a cancer diagnosis, especially after an advanced cancer diagnosis. This is a major life change and there are lots of big and small things to adjust to. You may benefit from medication, or a medication adjustment if you have been on psychiatric medication before. A mental health counselor can provide emotional support and help you determine if a referral for medication is the right thing for you. Other stress reduction options include mindfulness and meditation strategies (the Mindfulness Based Cancer Recovery program https://www.amazon.com/Mindfulness-Based-Cancer-Recovery-Step-Step/dp/1572248874 ), yoga, acupuncture, and other forms of movement that release tension. While it can be hard to accept help from others, there is no more important time than now to activate your support network, whether it be family and friends, community groups, faith communities, colleagues, and other cancer survivors. Appoint a trusted friend to be the point person for your network to send out important medical updates and to organize help (e.g., https://www.mealtrain.com/) so that you can focus on yourself and treatment. 

Organizations to check out:


Michelle Bronzo
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