In the days, weeks and months after diagnosis with ROS1+ cancer, the amount of information patients receive can be overwhelming. Yet it is important to understand your condition and your options. It can be challenging to know what to ask your doctor.
Asking your doctor questions doesn’t stop at diagnosis. There will be many questions to ask throughout the treatment of ROS1+ cancer. We have compiled questions that can create more productive and informative conversations with your doctor throughout the process.
First questions to ask your oncologist
ROS1+ cancer is so rare that many oncologists may be uninformed when they first diagnose you with the gene rearrangement. Some of the first questions you should ask your doctor after diagnosis include:
Have you seen any other patients who are ROS1 positive?
Are there doctors that I can talk to more about ROS1+ cancer?
What are your feelings about consulting with an experienced ROS1 clinician or researcher?
What other types of support or expertise should we bring into our medical team?
I would like to do some research on this type of cancer. Do you have any suggestions for where I should look? Can we discuss what I learn in the future?
Doctors can be forgiven for not knowing much about ROS1+ cancer (after all, it IS fairly rare), However, if your doctor is not experienced in treating ROS1+ cancer, you need them to be willing to consult clinicians who have seen many ROS1+ cancer patients. The ROS1ders manage a list of ROS1+ cancer experts you could bring to your doctor to assess their willingness to consult. In addition to ROS+ cancer consultations, you will want to learn if your doctor is connected to other specialists and resources available at the cancer center such as palliative care, or mental health support for cancer patients.. Asking questions early can help give you some comfort that you are in the right place to begin your treatment.
Questions to ask about treatment and side effects
While your doctor may not have any other patients with ROS1+ cancer, they still may be well-informed about the type of therapies that treat ROS1 rearrangements. Questions to ask about treatments and side effects include:
Do you have other patients who are on targeted therapy drugs or TKIs?
What targeted therapy drugs are accessible to me?
Is there any clinical or preclinical evidence that this treatment is likely to work for my cancer?
How effective is this targeted therapy in the body? In the central nervous system?
What side effects are associated with this targeted therapy drug?
How do we work together to manage the side effects of treatment?
Does this facility have a palliative care team to help me manage difficult side effects?
Targeted therapy drugs can have many side effects. Some can be managed, but others may require a dose reduction or even a change in treatment. It is important to talk to your doctor about what side effects to expect, how to manage them at home (where possible), and which resources are available to help you maintain a good quality of life while taking them. The goal is to stay on a treatment for as long as it continues to be effective for you.
Questions to ask about scans
You should expect regularly scheduled scans to monitor the status of your cancer. However, there is not a standard of care regarding the timing of scans. You need to know which scans you will have, and how often. Important questions to ask about scans include:
How often will I have scans of the chest and other areas, such as abdomen and pelvis? Will these be CT scans, or something else? (Note that x-rays are not as effective as CT scans for monitoring lung cancer.)
How often will you be doing scans of the brain? Will these be MRI scans?
What other types of scans (such as PET scans) will I have? How often?
It is common for ROS1+ patients in the ROS1ders’ group to receive CT or PET scans of the body every 3-4 months while on TKIs. In the United States, academic cancer centers familiar with ROS1 tend to order MRI scans of the brain at diagnosis for non-small cell lung cancer, and every 6-12 months thereafter because ROS1+ cancer tends to spread to the brain. If the patient already has brain metastases, brain MRIs might be ordered more frequently. However, some doctors will not order a brain MRI unless the patient has neurological symptoms. It is important to discuss the timing and types of scans with your doctor so you are prepared for the new procedures and schedule.
Questions to ask when cancer progresses
At some point, Stage IV ROS1+ Cancer patients typically find that their targeted therapy has become less effective or stopped working completely. When this happens, there are several things you should ask your doctor, including:
Would a rebiopsy be advisable to identify resistance mechanisms?
Is a TKI or other treatment available to address my resistance mechanism?
Can you connect me to available ROS1 clinical trials?
If a new TKI is suggested: What is the TKI’s response rate after one previous TKI? Two? Three?
What new side effects might I expect from the proposed treatment(s)?
Every case of ROS1 cancer progression is different, and a variety of factors must be considered when choosing the next treatment. Make sure to talk to your doctor about all of the available options including other targeted therapy drugs and clinical trials.
We know you will have many questions as you continue through treatment, but The ROS1ders are here to help answer your questions too. Our private Facebook group "ROS1 positive (ROS1+) cancer" welcomes ROS1+ cancer patients and their immediate caregivers from all over the world. This Facebook group is an active community where you can ask questions about treatment, stay up to date when ROS1ders learn about new research, and hear the stories of others with this disease.