Considering clinical trials: What to keep in mind as you start

 

 

Where is your primary tumor? Where all has it metastasized? What mutations does it have? From your experience living with it, what do you know about its behavior? If you have started treatment, how well does it respond to chemo & other treatments? What are the methods used to track your cancer growth? Are cancer markers like CEA and CA 19-9 or ctDNA good for you to assess response to treatment? Do mets show themselves well on CT scans, MRIs or PET scans? Is increasing pain or increased liver markers and bilirubin a way to know the tumors are growing? All of this is information about your specific tumor. Next, what do you know overall about tumors like yours? What is their response to treatment? What has your care team told you about your disease or what you have read on sites like CTU, or the NCCN patient guidelines or heard in groups like COLONTOWN? How do mutations or other specific tumor attributes like sidedness or type of tumor like mucinous or signet ring etc affect treatment responses? This kind of information is about colorectal cancer in general.

 

 

In your journey to survive past 5 years, your best allies are your body, your mind, your family, and your care team. To engage in this well, you need to be clear about your values and what you hold dear and what things you fear the most. If the diagnosis is incurable, most stage IV disease is in this category, your chances of getting to a cure are low, in the less than 5 years you have left, what are your priorities? The top of the list can be to live more than 5 years, and you may realize you want to change other things about your life and spend time in more meaningful ways. This is a very difficult thing to address and getting mental health support as you grapple with this question, whether it’s discussions with your partners/caregivers or with a mental health professional is very important and can be very helpful.

 

 

What are your goals of care or treatment? To be cured of cancer is a great goal, but for the vast majority of metastatic CRC it may be unrealistic to have this as the only goal. The 5 year overall survival numbers are collected after the fact, so as you begin your cancer journey, you don’t quite know exactly what your disease trajectory will look like. But it is very helpful to know the lay of the land so you can figure out how to stay in a path where the dangers are more manageable and, if possible, to navigate to the safety of a cure. While you are early in treatment and able to manage your life well around treatments etc, and your disease is shrinking/stable, it may be hard to think of a time when it will progress despite treatment. Yet, that knowledge may need to be kept in view so you can spend some time exploring options on how to maximize the liveable, manageable part of being a stage IV patient, while you do everything else.

 

If long term survival could be an unrealistic goal for many, what are more achievable and realistic goals? Aim for expanding treatment options, improving quality of life, reducing the impact of cancer in your life. These are great goals– the chances of improving survival may come as a side-effect of the goal to expand treatment options. Goals to improve quality of life may come with the side-effect of a more or less “normal” life despite cancer. Aiming to reduce the impact of cancer in your life may enable you to figure out where you can compromise as you pursue longer survival and what you cannot forgo. Having this understanding of what you care about and value besides being cured of your cancer is very valuable as it can help you decide how you want to chart your journey through cancerland.

 

One of the aims of all research and patient advocacy is to make this gap between diagnosis and death as wide as possible, and the life in between as wholesome and normal as possible. It’s good to imagine the best case (a cure) and worst case scenario (suffering and death from cancer) and think of all the ways you can veer the course of your cancer journey towards the best case scenario. Even if a cure may be unreachable, this way, your life can be the best quality and duration you can have under the circumstances. All along your cancer journey it is important to re-evaluate your path and make sure the road ahead leads you to your goals of care.

 

 

Your care team is your main armor in this fight, and you need to make sure that you are on the same page about your goals of care with your care team. Your care team may have strengths and weaknesses and it is up to you to find other members— 2nd opinion consults, surgeons, interventional radiologists, palliative care doctors, mental health folks, any other supportive care specialists you need—to strengthen your armor. If they can’t help you with clinical trials as much as you would like, find others who can. Look for resources on CTU and in groups like COLONTOWN and learn about ways you can strengthen your care team.

 

 

This is critical. CRC has just 2 good lines of therapy. This means once your tumors progress on the 1st chemo regimen (usually FOLFOX+ a biologic) and then you get the 2nd regimen (usually FOLFIRI+ a biologic) and your tumors progress through it—this can be 2-4 years for most people—you will need to recycle and reuse the prior regimens or try the third line drugs which work only for a small % of people. That said there are many ways to add local treatments (like resection or ablation of mets, SBRT, cytoreductive surgery, palliative radiation etc), add more drugs to these standard regimens to tailor it for the individual and their disease and stretch the benefit as much as possible with minimum side effects. The reality is that we have a very limited number of approved treatment options for metastatic CRC that no matter how much you manage things, at some point patients run out of options. The whole goal of prolonging survival is to stretch out things so that for each person, with the available limited number of options, benefit can be maximized.

 

 

I cannot stress this enough. Decision-making in cancer is at its heart learning to cope with uncertainty. We need to find ways to deal with the anxiety around cancer treatment decision-making.

 

The information on outcomes available will be partly relevant to you since it is based on what is seen in a population of similar patients. Your disease and your body are unique, and it is hard to predict certain outcomes for an individual based on what’s seen in a population, at best they give you a range of variable outcomes that may likely happen for you. The results of your decision-making will be similarly uncertain until all of it plays out.

 

Fully appreciating and accepting this, you have to make the leap based on the best assessment of the situation. It’s like throwing a dice. Depending on how many sides it has, there are a few possibilities about how it will land. But it is hard to exactly predict how it will land for each throw.

 

In this cancer journey, the key is to find how the dice need to fall for you to have the best outcome (based on your particular disease, treatments, response to treatment etc) and then to figure out how you can make the dice fall like how you want. But even with all the planning, there is a certain degree of uncertainty in the whole process that we cannot control. This is extremely uncomfortable and disconcerting.

 

Having a great care team can help here. Being able to discuss the uncertainties in a support community is also very helpful.

 

As you continue on the path you chose at the fork, you will always wonder if the option you didn’t choose was the best one for you and if you missed other turns that were better. This is just the nature of it. Once you choose an option, don’t second guess yourself. There is no do-over. You can never know if the other option was better for you because you will never be able to test them all and see which one was better. So don’t waste your time second guessing things.