Frequently asked questions by care partners
This photo does not represent an actual patient and care partner.
Find answers for commonly asked questions
Below you will find answers based on different topics care partners commonly have questions about.
Mental Health
What steps can I take to help my loved one stay mentally healthy?
It’s important to surround you and your loved one with supportive people who care, including trusted family members or friends. Many people are helped by joining a support group, a sounding board among patient peers (or medical professionals) who understand. Whether the group be in person (locally) or online, you both have sources of support who are ready to listen. As a care partner, you may need to find a separate support group, or seek individual therapy, to address your specific needs.
When is it time to include social workers or therapists?
What about my mental health? Is it okay to sometimes say “no”?
Yes! As a care partner, it is important for you to create boundaries around your own personal health and wellness. Doing so will allow you to protect your energy and sustain your work as a care partner for as long as necessary. Nothing can come from an empty cup, so keep this in mind when you feel like you’re running on empty. Keep your mental health in check by scheduling short breaks throughout the day, or step outside for a few minutes of fresh air. Start with 10 minutes a day of non-negotiable time when you do something that makes you happy, like listening to music, enjoying hobbies, or writing in your journal. It’s often the smallest things that allow you to recharge your batteries for whatever challenges lie ahead.
Resources
Is IncreMENtalADT.com useful for care partners too?
Yes! The incremental changes you can make using the patient roadmap 4-week course is great for the two of you to do together. If your loved one is new to ADT, he'll feel like he has a teammate who understands the importance of maintaining his health and well-being, and you’ll know you’re doing all you can to help him navigate the prostate cancer journey. Each weekly course is taught in digestible increments, and you’ll both be healthier as a result.
Is there a resource I can use for doctor appointments?
You are always encouraged to ask your loved one's clinical care team to explain the purpose of the next few appointments on the schedule so that you both can come prepared with an understanding of the goal of the appointment. The Doctor Discussion Guide can help with this, by allowing you space to take notes and jot down questions as they arise so you get the answers you need at each appointment. It is available for download below.
Side effects
Which side effects are considered the most common?
- Fatigue
- Nausea and vomiting
- Diarrhea
- Constipation
- Headaches
- Loss of appetite
- Infusion related reaction
- Injection site pain
- Flu-like symptoms with chills
- Joint pain
- Muscle weakness
In addition, some specific side effects may come with certain treatments, such as loss of libido from ADT, cognitive changes from ARPIs, anemia and low neutrophil count from PARPis, hair thinning or hair loss from chemotherapy, and bone aches or changes in taste from radioligand therapy.
How do I manage his symptoms and side effects at home?
Your loved one’s doctor will provide guidance on how to identify side effects and symptoms based on his treatment plan, and how (and where) you’ll need to manage them.
Treatment
How do I know if treatment is working?
Treatments for your loved one will depend on the type and stage of prostate cancer he has. If the cancer is localized, the treatment plan may look very different than if it has spread. Once treatment begins, it's important to stay in regular contact with the healthcare team. They will typically assess disease response by routinely monitoring PSA level and labs such as electrolytes, liver function studies, alkaline phosphatase, and lactic dehydrogenase monthly, or once every 3 months. They will also monitor disease response with routine imaging which can include standard imaging such as CT scans, nuclear medicine bone scans, or PET scans. They’ll guide you on which symptoms and side effects to watch for, monitor how well the treatment is working, and help decide if adjustments—or even a new treatment—are needed. Staying closely connected ensures your loved one gets the most effective care at every step.
When do I talk to my loved one’s doctor about different treatment options?
Treatment planning is a fluid dynamic between the clinical team, your loved one, and you. If there are questions or concerns about the treatment path, be sure to initiate a discussion about treatment options. These conversations most commonly occur at the time of diagnosis and if or when there is evidence of disease progression, such as rising PSA or visible on imaging. Treatment options will also be revisited by the clinical team if your loved one is not tolerating treatment due to side effects. Side effects can be numerous with prostate cancer treatment, especially advanced prostate cancer treatment, and physical side effects such as fatigue, hot flashes, bone pain, sexual health issues, and weight loss may occur. You and your loved one need to have honest conversations with his doctors about the severity of side effects and what they may look like with different treatments, as that may influence the treatment plan that the two of you decide on.
How do I keep track of the treatments?
Determine what method of organization works best for you, as it will be important to start documentation of treatments as soon as they begin and keep them updated as frequently as possible. You can use the Treatment Checklist—a resource you can use to track different treatments, who prescribed them, when they are taken, if they’re taken with food, and more. This can help you both stay more organized and help take the medication management load off your plate.