Has a loved one been diagnosed with prostate cancer? You are not alone. This guide provides easy-to-understand information and support resources, so you can take care of your needs as a caregiver, and those of your loved one.
CAREGIVER GUIDE CAREGIVER GUIDE
Has a loved one been diagnosed with prostate cancer? You are not alone.
We are here to help.
ZEROCANCER.ORG ZEROCANCER.ORG
1
CAREGIVER GUIDE
ZERO Prostate Cancer is the leading national nonprofit with the mission to end prostate cancer and help all who are impacted. ZERO advances research, provides support, and creates solutions to achieve health equity to meet the most critical needs of our community.
ZERO would like to thank the caregivers who contributed their thoughts to the creation of this caregiver guide.
ZEROCANCER.ORG
2
Table of Contents
A Letter from ZERO............................................................................. 4 Prostate Cancer Basics......................................................................... 5 Treatment and Side Effects.................................................................. 6 Doctor’s Visits and Medical Care....................................................... 10 Communication and Relationships.................................................... 12 Taking Care of Yourself...................................................................... 15 Caregiver Resources.......................................................................... 17 Newly Diagnosed Worksheet............................................................ 19 Questions for Your Doctor: Newly Diagnosed................................... 20 Questions for Your Doctor: Advanced Prostate Cancer..................... 21 Notes. ................................................................................................ 22 Page
CAREGIVER GUIDE
A Letter from ZERO Dear Friend,
After a loved one is diagnosed with prostate cancer, a flood of emotions may follow. Anger, grief, confusion, denial, fear…all of these are normal and common. This new responsibility as a caregiver will feel overwhelming at times, so taking care of YOU will help ensure you are able to care for your loved one. The term “caregiver” is used throughout this guide to describe the informal, unpaid role of taking care of a loved one with prostate cancer. Some caregivers prefer the term “care partner,” because this term aligns closer to the shared commitment that the person diagnosed with prostate cancer and their loved one are partners in this experience. Whichever term you and your loved one prefer, open and honest communication, free from guilt, and without holding back, is key. Committing to listening, asking questions, and asking for help when needed can lead to big benefits. The purpose of this guide is to provide you with tools, tips, resources, coping strategies, and support. Putting your own needs aside while you care for your loved one will not work in the long term. You have the right to take pride in what you’re doing, you have the right to seek help from others, and you have the right to maintain some bit of normalcy from your life before your loved one was diagnosed with prostate cancer. The demands of caregiving can take a heavy toll if you do not receive enough support or if you’re feeling a lack of control over the situation. Arming yourself with knowledge of prostate cancer, available resources, and tools for self-care will make this situation better for yourself and for your loved one. Just as no prostate cancer diagnosis is the same, no two people will provide care for a loved one in the same ways. You can do this…and you don’t have to do this alone. Rely on this guide and know that you are among more than 53 million Americans who are facing the challenge of caring for a loved one with a serious disease.
Remember, taking care of yourself is not selfish - it must be done for your sake and so you can care for your loved one.
Shelby Shelby Moneer, VP of Patient Programs & Education Sincerely,
ZEROCANCER.ORG
4
CAREGIVER GUIDE
Prostate Cancer Basics Knowing basic prostate cancer facts and figures can help you better understand the disease and feel more equipped to talk about prostate cancer with others.
PROSTATE CANCER IS THE SECOND LEADING CAUSE OF CANCER DEATH AMONG AMERICAN MEN
BESIDES SKIN CANCERS, PROSTATE CANCER IS COMMONLY DIAGNOSED CANCER AMONG AMERICAN MEN THE MOST
PROSTATE CANCER SURVIVORS ALIVE IN THE USA 3.1+ MILLION TODAY, THERE ARE
ENCOURAGING NEWS • The five-year survival rate for all prostate cancer diagnoses is 97%. • Prostate cancer is usually a slow growing disease. You likely have time to gather information with your loved one to make informed decisions about care. • There are a number of recent treatment advances. Currently, more than 35 drugs are approved by the FDA for prostate cancer.
6
EVERY
AMERICAN MEN WILL BE DIAGNOSED WITH PROSTATE CANCER IN THEIR LIFETIME
BLACK MEN WILL BE DIAGNOSED WITH PROSTATE CANCER IN THEIR LIFETIME
2 minutes
A MAN IS DIAGNOSED WITH PROSTATE CANCER
Staging and Grading Once prostate cancer is confirmed, it’s important to know and learn about the stage (location) and the grade (aggressiveness) of the tumor. The grade is also called the Gleason score. These are important factors in determining the course of treatment and risk of recurrence (the chance that the cancer comes back). For more information, go to zerocancer.org/staging-and-grading/ .
ZEROCANCER.ORG
5
CAREGIVER GUIDE
Treatment and Side Effects Learning about all treatment options, including clinical trials, is important before deciding on a treatment. Treatment decisions should be based on many factors, including the patient’s age, overall health, family history, stage at diagnosis, aggressiveness of the disease, and results of genetic testing, among others. In addition, it is important that you and the patient both understand possible side effects of each treatment, how side effects can be managed, and weigh quality of life issues into the treatment decision process. Side effects related to prostate cancer treatments vary by the type of treatment received. Some common side effects of treatment are urinary incontinence (the inability to control your bladder) and erectile dysfunction (the inability to achieve a full erection). Other side effects can include fatigue, depression, and infertility. Some of these potential changes can impact the patient’s self-esteem and personal relationships. Therefore, it is important for you to be an active participant in the conversations with your loved one and their doctors about potential side effects of treatment. Once the course of treatment is determined, your loved one’s doctors should work on a plan to manage any side effects they might experience. As treatment progresses and after it is completed, it is important to bring up any concerns with prolonged side effects with doctors.
POSSIBLE SIDE EFFECTS
TREATMENT
WHAT IT DOES
Removes the cancerous tissues and the prostate
Urinary incontinence, erectile dysfunction (ED), and infertility ED, hot flashes, mood changes, loss of libido, depression, cardiovascular events, and bone loss ED, increased urinary urgency and frequency, diarrhea, rectal bleeding, and discomfort during urination and bowel movement Fever, chills, fatigue, and joint or body ache Nausea, fatigue, anemia, vomiting, diarrhea, decreased appetite, headache Low grade fever, tingling around mouth or hand cramps from low calcium, dental pains Hair loss, fragile bones, nausea, and nervous system disorders like confusion, depression, or headaches
Surgery
Hormone Therapy Minimizes presence of androgens which fuel prostate cancer growth
Slows prostate cancer cell growth by targeting cells externally or by injection
Radiation
Changes the body’s immune system to kill cancer cells
Immunotherapy
Targeted Therapy Targets a particular protein or genetic mutation in the tumor
Inhibits bone loss and fractures and relieves pain from prostate cancer in the bone Targets cancer cells that grow quickly including cancer cells metastasized to the bone
Bone-Related Treatments
Chemotherapy
ZEROCANCER.ORG
6
CAREGIVER GUIDE
The good news is that there have been many treatment advances in recent years. For more information on active surveillance, surgery, radiation, hormone therapy, and other types of prostate cancer treatment, visit zerocancer.org/types-of-treatment/ .
What to Expect with… Surgery
Surgery is one of the most common treatments for early-stage prostate cancer. It can either be performed directly by the surgeon or robotically assisted (laparoscopic). Some studies suggest a shorter recovery period associated with robotic surgery compared with traditional surgery. Whichever type of surgery is performed, it will still require a one-two night hospital stay and patients typically will need a catheter to help drain urine for up to 14 days post-surgery. Many physical activities will be limited for up to two months after the surgery. Urinary incontinence and ED are the two most common side effects associated with surgery. Patients can expect to need adult diapers/pads in the few months after surgery. While issues with incontinence generally improve over the year following surgery, some patients may find they will continue to need to wear adult diapers or pads beyond this time. Your loved one should talk with a physical therapist or their doctor about the benefits of doing pelvic floor exercises. These can be an important tool in managing incontinence, as well as ED. Often for the best results, these exercises should be done before surgery to help strengthen the pelvic floor and hopefully limit the effects of ED and incontinence after surgery. Radiation External beam radiation therapy (EBRT) is non-invasive, so patients can be active during and after treatment with no down time. Brachytherapy, while less common, is a type of internal radiation therapy that involves the placement of radioactive seeds or temporary catheters into the prostate. This is a minimally invasive procedure, and most patients can expect to return to normal activity in less than a week. Increased urinary and/or bowel frequency is a common side effect during the course of EBRT. It usually begins to improve two to four weeks after the end of treatment completion. ED is another common side effect. It may improve over time, particularly in men who had good erectile function before treatment. Brachytherapy tends to have similar side effects as EBRT, such as ED, urinary frequency or obstruction, and rectal bleeding. A NOTE ABOUT FERTILITY For men and their partners who may want to have biological children, it is important to note that infertility is another side effect of surgery. Radiation also may impact fertility. If this is a concern, talk to your doctors about options such as sperm banking that can be done before treatment.
ZEROCANCER.ORG
7
CAREGIVER GUIDE
Hormone Therapy Hormone therapy, also called androgen deprivation therapy (ADT), is a common treatment option for patients with advanced prostate cancer. It may also be used with other therapies like radiation for early-stage disease. ADT is designed to stop testosterone from being released or prevent it from acting on prostate cells. This loss of testosterone has side effects in nearly all men. These side effects include loss of bone density, weight gain, increased risk for heart attacks and diabetes, fatigue, mood swings, decreased sexual desire, and ED. Patients may be able to relieve some of these side effects with changes in diet and exercise. Chemotherapy Chemotherapy is a common treatment option for advanced prostate cancer and includes medications docetaxel (Taxotere) and cabazitaxel (Jevtana). Side effects vary based on medication type and amount, and the overall health of the patient. Significant fatigue is one of the most common side effects, usually experienced during the first week of each cycle. Other side effects include hair loss, numbness or weakness in fingers or toes (neuropathy), nausea, diarrhea, and mouth sores. Chemotherapy can reduce a patient’s white blood cell count and put them at higher risk for infection. Therefore, it is important to report a fever to doctors right away. Other serious side effects, such as not being able to keep food or drink down, should also be reported to doctors so they can be addressed immediately.
“Be patient, your partner is going through a lot. Do your research and share with the patient. Remember, there is always new medical research improving his odds.” Regina Hoover, Prostate Cancer Caregiver
Educate Yourself Understanding the diagnosis, treatment, side effects, and prognosis can help you and your loved one feel more confident. Many studies have shown that informed and involved patients can experience better outcomes. Use trusted resources, such as zerocancer.org , when seeking information for your loved one’s condition.
ZEROCANCER.ORG
8
CAREGIVER GUIDE
Clinical Trials Clinical trials are patient research studies aimed at evaluating a medical, surgical, or behavioral intervention. They are the primary way that researchers find out if a new drug, diet, or medical device is safe and effective in people. All current prostate cancer treatments are available because of past clinical trials and thanks to past clinical trial participants.
Hundreds of clinical trials are available for prostate cancer patients. Oftentimes people do not participate in a clinical trial because they did not know they were eligible or that one was available.
Additional information about clinical trials, as well as a free clinical trial matching service, can be found at zerocancer.org/clinicaltrials . After Treatment
SURVIVORSHIP CARE PLAN • Every cancer survivor should have one after primary treatment. • Is a comprehensive care summary. • Should include a record of treatments and followup plan. • Is a roadmap to life after prostate cancer treatment.
The completion of prostate cancer treatment can bring both relief and worry. When caught early, initial treatment may mean the patient is considered free of disease. Most men will live cancer-free for years, and some for the rest of their lives. Once treatment is completed, your loved one should be provided a survivorship care plan. This should include plans for continued PSA testing to monitor for possible recurrence.
ZEROCANCER.ORG
9
CAREGIVER GUIDE
Doctor’s Visits and Medical Care For the best possible treatment and post-treatment results, consider engaging with a multidisciplinary healthcare team. A multidisciplinary team is a group of healthcare professionals from different specialties who work together to suggest a treatment plan based on your loved one’s diagnosis, personal health, and preferences. This comprehensive approach can help improve health outcomes and quality of life. For more information on the types of providers who may be on your healthcare team, go to zerocancer.org/choosing-health-care-team/ .
Preparing for Appointments Plan travel to appointments ahead of time, including where to park.
Take with you a list of questions you and the patient want to ask. You can ask the treatment team about their experience with various surgeries and treatments, and even how they might help you manage different side effects. For question ideas, visit zerocancer.org/learn/resources/ questions-for-your-doctor/ . Write down answers and take notes, or ask to record with your phone when the doctor is speaking, if you can. It is a lot to take in so these actions can help you remember important details later. Discuss with the patient whether you both want an additional person to be present during some appointments, to help listen and take notes. Some patients and caregivers may find this helpful, while others might feel this is invasive when discussing prostate cancer treatment and side effects.
ZEROCANCER.ORG
10
CAREGIVER GUIDE
Keep a notebook with important details accessible to you and the patient - doctors, appointment dates, medications, test/scan dates and results, pathology reports, etc. Tracking additional items such as mood, sleep, eating habits, and pain levels may also be helpful. ZERO’s Newly Diagnosed Worksheet is a good starting point and can be found at the end of this guide . Don’t be afraid to repeat your questions or ask the doctors to repeat their responses, until you have a clear understanding. It may be helpful to ask the doctor to write down some of their responses, particularly for terms or medications that are difficult to pronounce or spell. It’s important to get these right in case you want to find out more information when you get home. Second Opinions Some people find it hard to tell their doctors that they’d like a second opinion. Seeking a second opinion following a prostate cancer diagnosis is common and doing so can make you feel more confident in treatment decisions. While it is most valuable to get a second opinion before beginning the initial treatment, it’s OK to get a second opinion at any point during care. A doctor shouldn’t discourage you from getting a second opinion. They should ENCOURAGE a second opinion. Before you start looking for a second opinion, contact your insurance company to find out what your policy covers. It’s important to give the new doctor(s) the exact details of the diagnosis and planned treatment, including the pathology report.
The important thing is that you and the patient feel comfortable with and confident in the doctors and the treatment decision. It is OK if it takes a second or even third opinion to get there!
ZEROCANCER.ORG
11
CAREGIVER GUIDE
Communication and Relationships A loved one’s prostate cancer diagnosis can be scary and overwhelming. You and your loved one are facing many decisions. It is important to communicate and support each other through treatment and beyond. A few reminders: Affirm your love and care for one another. Be direct, honest, and clear in your communication. Address the hard topics. Be open about fear, stress, financial concerns, intimacy, etc. Your loved one may not always want to hear what you have to say. Listening to your loved one may be the most valuable thing you can offer. Your loved one may need time to process their thoughts and fears, and may do so in their own way.
Don’t take outbursts personally. Some prostate cancer medications alter patient mood, including anger and irritability. It’s ok to step away and resume the conversation later. It is your loved one’s cancer. Some decisions must be made by them.
Caregiving for Your Partner During and after cancer treatment, you may feel more stress in your relationship than usual. Couples often feel stress about all the decisions that need to be made, possible role changes, finances, and intimacy challenges, among others. Here are some practical tips that may help strengthen your relationship: Become a team , particularly in decision making. Discuss which decisions you should make together, and which you should each make as individuals. Consider how you can best support each other. Look for opportunities to say “thanks.” You are each doing so many small (and big) things to get through every day. Look for these things and thank your partner. Showing gratitude can make you both feel better. Make time for each other . Set time aside on a regular basis to connect, whether it is scheduling dates, sharing a daily meal together, going for a walk, or watching a movie. Consider counseling . Some couples may find seeing a mental health professional such as a therapist, counselor, or psychologist, either together or individually, may help strengthen their relationship.
ZEROCANCER.ORG
12
CAREGIVER GUIDE
SEX AND INTIMACY Challenges with intimacy are common in many relationships, particularly after a cancer diagnosis. However, prostate cancer treatment presents its own unique challenges since erectile dysfunction (ED) is such a common side effect. For this reason, prostate cancer is sometimes referred to as a “couple’s disease.” Talk with your healthcare team about treatment options and these potential impacts to you and your partner’s quality of life. There are several treatment options for ED. Before and after surgery or radiation therapy, working with a physical therapist to strengthen the pelvic floor by doing kegel exercises can help to manage or prevent ED, as well as urinary incontinence. Other aids to treat ED include medications, injections, vacuum devices, and implants. Using these to have sex may take some getting used to. Some of these options limit spontaneity and may take more planning. Talk with your healthcare team about management of ED, including pelvic floor exercises. Even if your partner does not experience ED, prostate cancer and its treatment can still affect intimacy. Every man is different, but the feelings caused by having cancer and the physical stress of treatment can affect the way they feel about their body and may lead to fatigue, a lack of interest in sex, or a lower libido. It is important for you to talk to your partner about how you both are feeling about intimacy. Don’t try to guess or assume what your partner wants. Your partner’s ED or loss of interest in sex does not mean they have lost interest in a loving and supportive relationship. Discuss with your partner how you can remain physically intimate. Intimacy means much more than sexual intercourse, and you may need to redefine what intimacy means to you as a couple. You and your partner may also want to talk to a sexual health professional. Ask for a referral from your doctor or go to the following websites to find a professional near you: aasect.org or sstarnet.org. Another source of information and comfort may be a prostate cancer caregiver support group. Intimacy challenges and their emotional toll are commonly discussed in these groups. If interested in joining a prostate cancer caregiver support group (or a patient support group), visit zerocancer.org/supportgroups . The loss of sex in a relationship, changes in the way a couple have sex, or starting sex again after prostate cancer treatment, can all affect a relationship. With time and work, you and your partner may be able to have a satisfying sex life despite these challenges.
ZEROCANCER.ORG
13
CAREGIVER GUIDE
Caregiving for Your Parent or Adult Child While many prostate cancer caregivers are partners, sometimes the role of primary caregiver falls to children or parents. It can be a difficult transition for a child to become their parent’s primary caregiver. Most children have leaned on their parents for support and care, and now the roles may be changing. Allow yourself to feel sad or angry about these relationship changes. Your parent is likely also sad and angry, and may even feel guilt about relying on you for their caregiving. Likewise, parents who care for their child with cancer often feel anger and guilt. Parents want to protect their children from life’s hardships and difficult feelings, even as adults. So it may not seem fair that your child is the one who has cancer. Remember: Set boundaries if needed . If your dad (or adult son) needs assistance with bathing or using the bathroom, neither of you may be comfortable with you helping in those ways. Establishing and discussing boundaries of what you are capable of, and what you are comfortable with, can help you both plan for the care needed. Discuss the difficult topics , like finances, insurance, and what to do if the level of care needed increases. Prostate cancer treatment and long term care, if needed, can drain financial resources. Arm yourself with information and ensure you have an understanding of the patient’s desire for their care. Get support , whether it is via a partner, siblings, or friends, through online caregiving forums or support groups, or seeing a mental health professional. Communicating with Other Family Members and Friends Often caregiver duties include updating family and friends about how the patient is doing. It is important to ask the patient what information they want shared, and with whom. Many patients and caregivers find that group emails or texts, private social media groups, or websites such as caringbridge.org are easy ways to provide updates.
ZEROCANCER.ORG
14
CAREGIVER GUIDE
Taking Care of Yourself Your role as a caregiver is extremely important and necessary. It can also be stressful and time-consuming. So it is important you take care of yourself. Consider the instructions that flight attendants provide passengers about oxygen masks - apply yours first before helping others. This is self-care - prioritizing your own well-being so you are your best self. Some practical suggestions for self care are below.
“You can do this! It won’t be easy but be kind to yourself and don’t forget about you in the process of caregiving.” Cheryl Nikituk, Prostate Cancer Caregiver & ZERO Board of Directors member
Prioritize Your Mental Health Make time to relax and find enjoyment daily. Take a break from the demands of caregiving. Do what you need or enjoy, whether it is reading, taking a walk, meditating, praying, gardening, watching television, or taking a nap. Treat or “pamper” yourself from time to time. Do something special you’ll enjoy such as getting a massage, manicure, or lunch with friends. Get support. Do what works best for you, whether it is an in-person or virtual support group, an online chat forum, or speaking with a spiritual leader. For information about ZERO’s Us TOO support groups, including groups specifically for caregivers, visit zerocancer.org/ supportgroups . Cope with your feelings, and talk to a counselor if needed. It is common for caregivers to feel one or more of the following emotions: anger, grief, loneliness, anxiety, depression, guilt, inadequacy, and hopelessness. Allow yourself time to recognize and work through these emotions. Consider whether talking to a mental health professional may be helpful. Write in a journal. This can help you process what you are feeling and the changes you are experiencing. It can also help relieve negative thoughts and feelings. Look for the positive. Try to set aside time to think about something you found enjoyable or rewarding that happened each day. You may find it’s helpful to journal positive affirmations, to return to on difficult days. Practice a hobby. Did you have a hobby you enjoyed before you were a caregiver? Find some time to do it again, or start a new hobby you’ve wanted to try.
ZEROCANCER.ORG
15
CAREGIVER GUIDE
Prioritize Your Physical Health Get the rest you need. Prioritize sleep at night (7-9 hours is recommended) and take short naps if you need. If you’re having trouble sleeping, talk to your doctor. Eat healthy. Eat a balanced diet so that you have the strength and energy you need, and to maintain your health. The added bonus is that if you and the patient eat healthy together, it will benefit their recovery and overall health also. To get you started, check out the Living Healthy cookbook by the Urology Care Foundation: urologyhealth.org/resources/urologic-cancer- cookbook . Exercise. Exercise has benefits for both your physical and mental health. In addition to improving heart health, strength, and endurance, it can reduce anxiety, depression, and fatigue. Attend to your medical needs. Keep up to date on all of your regular medical appointments, screenings, and medications.
Ask for Help Consider your own strengths and limitations, and decide what you can do and where you may need to ask for help. Accepting help isn’t easy, and asking for help is even more difficult. People often want to help but may not know how to offer it. Be specific in asking for what you need and what would be helpful to you and your family. Take advantage of respite care. Consider others that can step in and cover caregiving needs to give you a break, for an afternoon, a full day, or even longer. Use resources such as caringbridge.org or lotsahelpinghands.com to communicate updates and needs with others. These sites can help you organize meal deliveries, rides to appointments, and help with household chores.
ZEROCANCER.ORG
16
CAREGIVER GUIDE
AVOID CAREGIVER BURNOUT Caregiver burnout is a state of extreme mental and/or physical exhaustion due to the stress of caregiving responsibilities. You may be able to avoid it by regularly taking care of yourself while you take care of your loved one. But if you experience caregiver burnout, you are not alone. Many caregivers experience this level of exhaustion. Practicing self-care regularly, asking for help, and processing your emotions may help you prevent and manage caregiver burnout. Caregiver Resources ZERO Programs ZERO360 Comprehensive Patient Support zerocancer.org/zero360 – a free, comprehensive service, staffed by case managers who help patients and their families navigate insurance, find resources to help pay for treatment and living expenses, connect with emotional support services, and ensure access to care. To connect, call 1(844) 244-1309. ZERO’s Us TOO Support Groups zerocancer.org/supportgroups – peer-led virtual and in-person groups offering emotional support, resources, and education to empower those impacted by prostate cancer to make informed decisions on testing, treatment, and management of side effects. ZERO Connect facebook.com/groups/zeroconnect - a Facebook-based support group for patients, survivors, and caregivers to share stories, ask questions, and connect. ZERO Black Men’s Prostate Cancer Initiative Support Group facebook.com/groups/ zerobmpcisupportgroup – a Facebook-based support group for Black and African American patients, survivors, and caregivers to share stories, ask questions, and connect. The Inspire Online Support Community zero.inspire.com – connects patients, families, friends, and caregivers. Educational Resources zerocancer.org/learn – ZERO offers a variety of prostate cancer educational resources. Helpful Reading, Listening, and Viewing Resources Prostate Cancer and the Man You Love - Book by Dr. Anne Katz Urology Care Foundation’s Prostate Cancer Caregiver Podcast Series urologyhealth.org/ healthy-living/care-blog/2021/prostate-cancer-caregiver-podcast-series ZERO’s Conversations with Caregivers: A Town Hall - video
ZEROCANCER.ORG
17
CAREGIVER GUIDE
Other Caregiver Support Organizations CancerCare cancercare.org - support services for cancer patients and caregivers. Cancer Support Community cancersupportcommunity.org - support services for cancer patients and caregivers. Caregiver Action Network caregiveraction.org - education, peer support, and resources for family caregivers. Family Caregiver Alliance caregiver.org - information, support, and resources for family caregivers, including a family care navigator service. Help for Cancer Caregivers helpforcancercaregivers.org - caregiver resources, including on burnout and stress, finding help, and self-care. Imerman Angels imermanangels.org - one-on-one peer support for cancer patients, survivors, and caregivers. National Alliance for Caregiving caregiving.org - caregiver resources and advocacy. Practical Help American Association of Retired People (AARP) aarp.org/caregiving/prepare-to-care- planning-guide/ - a guide designed to help develop and implement a caregiving plan which includes tips for organizing important documents; resources; information on self care; and checklists, medication charts, and contact lists. American Association of Sexuality Educators, Counselors, and Therapists aasect.org - find a sexual health professional in your area. CaringBridge caringbridge.org - free service where you can provide updates to family and friends. Get Palliative Care getpalliativecare.org - learn about palliative care and find it in your area. Lotsa Helping Hands lotsahelpinghands.com - free service where you can provide updates and get help from your private online community with meal deliveries, rides to appointments, and help with household chores. Society for Sex Therapy and Research sstarnet.org - find a sex therapist in your area. Triage Cancer triagecancer.org - provides free education on the legal and practical issues such as financial and insurance matters that may impact individuals diagnosed with cancer and their caregivers. We’re in This Together wittforever.com - an online platform empowering you to create a personalized registry to get the support you need by making it easy to ask for and receive help from friends and family.
ZEROCANCER.ORG
18
NEWLY DIAGNOSED WORKSHEET
INFORMATION ABOUT YOUR PROSTATE CANCER Use this worksheet to keep track of basic information about your prostate cancer diagnosis as you need in order to make your decisions about your care. Date of diagnosis ______________________________________________________________________________ PSA level at diagnosis __________________________________________________________________________ Gleason score __________________________________ Grade Group _________________________________ Number of biopsy samples taken ________________________________________________________________ Number of biopsy samples containing cancer _____________________________________________________ Stage at diagnosis (I-IV) _________________________________________________________________________ Nodal involvement? Yes No My cancer is: Localized (only in the prostate) Locally advanced (spread to just outside the prostate) Advanced or Metastatic (spread to other organs or parts of the body) Location of metastasis (spread) ___________________________________________ Date Follow-up Tests Results _____________________ CT Scan ____________________________________________________ _____________________ MRI ____________________________________________________ _____________________ PET or PET/CT Scan ______________________________________________________ _____________________ Other tests ____________________________________________________ PHYSICIANS Prostate cancer diagnosed by: Name: ___________________________________________ Contact information: _______________________ Other doctors or healthcare providers seen: Name: ___________________________________________ Contact information: _______________________ Name: ___________________________________________ Contact information: _______________________ Name: ___________________________________________ Contact information: _______________________ Other important numbers: _______________________________________________________________________ LEARN MORE We encourage you to use this information in conversations with your healthcare team about prostate cancer and related topics. For more information about prostate cancer and ZERO Prostate Cancer, visit our website zerocancer.org/learn . ZERO Prostate Cancer provides this information as a service. It is not intended to take the place of medical professionals or the recommendations of your healthcare team. We strongly suggest consulting your healthcare team if you have questions about your specific care.
A PATIENT EDUCATION SERIES
QUESTIONS FOR YOUR DOCTOR: Newly Diagnosed
These questions are to help someone who has just been diagnosed with prostate cancer begin to make a plan with their healthcare team. Consider using a notebook to record test results, treatments, and upcoming appointments to feel more organized. Having all important information together may help reduce some of the stress of a prostate cancer diagnosis. QUESTIONS FOR YOUR DOCTOR Diagnosis What exactly is my diagnosis? What is the stage and Gleason score? How aggressive is the cancer? What is my risk group? What other tests will be done? Treatment What are all of my treatment options? What is the goal of treatment? What treatment do you recommend based on my stage and risk group? Why do you recommend this particular treatment? Am I eligible for a clinical trial? What are the potential side effects of the treatments we discussed? How can these side effects be managed? What will my treatment schedule be? Living with Prostate Cancer Are my siblings, children, and grandchildren at higher risk? Where can I get more information about prostate cancer and treatment options? What steps can I take to be active and healthy during and after treatment? Consider using a notebook at your appointments and taking someone with you if you can. Many people seek second opinions to explore all CONSIDER A SECOND OPINION?
options. Seeking a second opinion is common and doing so can make you feel more confident in the treatment decision that you make.
Do you have resources or services for my spouse or partner? How can I find support and resources to help pay for my cancer treatment?
Finding out that you or a loved one has prostate cancer can be scary. Prostate cancer is usually a slow growing disease. You have time to gather information about your diagnosis and make an informed decision about your next steps. Many resources and services are available and ZERO is here to help you along the way.
ZERO Prostate Cancer provides this information as a service. It is not intended to take the place of medical professionals or the recommendations of your healthcare team. We strongly suggest consulting your healthcare team if you have questions about your specific care. LEARN MORE We encourage you to use this information in conversations with your healthcare team about prostate cancer and related topics. For more information about prostate cancer and ZERO Prostate Cancer, visit our website zerocancer.org/learn .
A PATIENT EDUCATION SERIES
QUESTIONS FOR YOUR DOCTOR: Advanced Prostate Cancer
These questions are to help someone living with advanced prostate cancer make a plan with their healthcare team to best manage the disease. Prostate cancer that spreads outside the prostate to other parts of the body is called metastatic prostate cancer (also called stage IV or advanced prostate cancer). Although metastatic prostate cancer cannot be cured, it can be treated and managed. Today, men are living longer with metastatic prostate cancer. QUESTIONS FOR YOUR DOCTOR What does it mean that the cancer has metastisized? Where is the cancer (metastases) in my body? What ongoing tests can I expect to monitor the disease?
Are there any risks with these tests? What are all my treatment options? Which treatment do you recommend and why? What are the benefits of the treatment you recommend? What are the risks and potential side effects of the treatment you recommend? How long do I have to make my decision? What do you suggest if the current treatment stops working? Am I eligible for a clinical trial? Living with Advanced Prostate Cancer Are my siblings, children, and grandchildren at higher risk? How can you help me maintain a good quality of life while undergoing treatment? What support services are available for me and my family? How can I find support and resources to help pay for my treatment? If You Have Metastases in the Bone What treatments are available to manage the cancer and the pain in my bones?
Consider using a notebook at your appointments and taking someone with you if you can.
Many people seek second opinions to explore all options. Seeking a second opinion is common and doing so can make you feel more confident in the treatment decision that you make. CONSIDER A SECOND OPINION?
What are the side effects of these treatments? How many visits will these treatments require?
Finding out that you or a loved one has advanced prostate cancer can be scary. Many resources and services are available and ZERO is here to help you along the way.
LEARN MORE We encourage you to use this information in conversations with your healthcare team about prostate cancer and related topics. For more information about prostate cancer and ZERO Prostate Cancer, visit our website zerocancer.org/learn . ZERO Prostate Cancer provides this information as a service. It is not intended to take the place of medical professionals or the recommendations of your healthcare team. We strongly suggest consulting your healthcare team if you have questions about your specific care.
A PATIENT EDUCATION SERIES
CAREGIVER GUIDE NOTES
ZEROCANCER.ORG
22
CAREGIVER GUIDE NOTES
ZEROCANCER.ORG
23
Brought to You in Partnership with:
zerocancer.org zerocancer.org/zero360 1 • 844 • 244 • 1309 (Toll Free Patient Helpline)
ZEROCANCER.ORG
© 2023 ZERO ® Prostate Cancer 02/23
Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18 Page 19 Page 20 Page 21 Page 22 Page 23 Page 24Made with FlippingBook flipbook maker