Prostate Cancer: A Caregiver’s Guide
“Your loved one has prostate cancer.” Those words can forever change your life. If your loved one has been diagnosed with prostate cancer, you may be struggling to find the right words to comfort him and the best way to support him. You may also worry about how your loved one’s cancer will affect you.
Caregivers struggle to understand their role. Many questions arise immediately. What is needed and how can you be helpful? How can you best provide support? Other questions you may be asking yourself include:
There is no one-size-fits-all answer when it comes to caring for someone diagnosed with prostate cancer. All caregivers learn with time how they can best support the man they love who has prostate cancer.
As men begin their prostate cancer journey, caregivers have a journey of their own. They too need support and meeting their needs becomes a parallel, legitimate goal.
Here are some tips to get started in your caregiver role:
I was working at a local hospital’s cancer center, managing its prostate cancer program, when my dad was diagnosed. Even though it was scary to find out that he had prostate cancer, I thought I was in a good position to possibly help him.
My dad isn’t the emotional type. He is a very logical and analytical person. He likes looking at all the facts and then making a decision about what to do. Because of that, I knew my dad didn’t want to take long walks with me or need a shoulder to cry on – he wanted information. I gave my dad several books to read and a lot of internet research information on the condition. In addition, I made appointments with urologists in the area for my dad to talk to. It was nice helping him to gather the information he needed before making a decision on what to do next.
When my dad finally decided what treatment he was going to have, I was glad I could support him and let him know what to expect. Because of my work I knew men have side effects if they choose a more active treatment. I was very clear to my dad that he may have issues, but he could talk to his doctor and get them addressed.
My dad has been in remission for several years now. It has been amazing to watch him conquer cancer with such dignity and grace. He has also become a great advocate for prostate cancer awareness. He has told the majority of his friends about his diagnosis and the importance of talking to your doctor about your risks. He has also participated in support groups and been a caregiver to others.
I am glad I could offer so much support to my father during this time. I am also happy I was able to provide him with the tools necessary to make the best decision for him.
When a man finds out that he has prostate cancer, it will take him time to absorb or process the information. As the caregiver, you can help your loved one navigate the next steps after diagnosis. It’s important to talk about how they feel about their diagnosis. It is helpful to share reactions, fears and hopes. It is also important to understand the steps in making decisions about treatment. You can help your loved one prepare questions for doctors’ visits and help ask for clarification when you don’t understand what is being discussed. You can help make appointments. While you are focusing on learning about the cancer, be sure to support the things that give your loved one pleasure, such as sports activities, family events, getting together with friends, etc.
My father, Jack, comes from a family with a long history of cancer. So at the age of 53 when his doctor told him he had prostate cancer, he naturally went to the worst-case scenario. Even though he was told he had localized prostate cancer and the outlook was good, to him it was the ‘Big C.’
After the news, he seemed overwhelmed. Knowing how my father was processing his diagnosis, my mother not only helped him emotionally, but also went to his doctor appointments, kept notes about his lab results and the questions they asked during his doctor visits and helped him to make well-informed choices about his care plan. She quickly became the health translator, a financial advisor and his main source of emotional support, but that is what he needed.
I wanted to do all I could to help the two of them. I researched as much as I could about the disease and his treatment choices. At first, my dad didn’t want to read through the facts. However, the more he began to learn about the disease and his course of care, the more he seemed to open up and talk about the family events he planned to go to post-treatment.
My mom kept on as the primary caregiver after my dad’s radical prostatectomy, but lending an extra hand meant a lot to me, and to them. I think it’s vital to realize people want to help -- so let them. Whether it’s running errands or making dinner, it’s important for caregivers to also take care of themselves by allowing others to be a part of the caregiving team.
Deciding the proper treatment for prostate cancer can be tough. This is the part of the process where research and examining your options for treatment is needed. Options may include active treatment, active surveillance, or even clinical trials. Some men, depending on their age, may choose not to have treatment at all. Many men struggle with what to do. It is usually helpful for the caregiver to learn all he/she can about the cancer diagnosis, potential treatments, treatment side effects and pros and cons of each. As a knowledgeable caregiver, you will be able to participate in discussions. If you are his sexual partner, you will be able to discuss potential side effects and how they may affect intimacy. Hopefully, when your loved one makes his decision about treatment, you will be united and ready to go forward as a team. Even if you are not his sexual partner, your understanding of the treatments will help you be more effective as you support your loved one.
When my husband, Euvon Jones, was suddenly diagnosed with Stage 4 prostate cancer in 2011, we were shocked and terrified. The cancer had spread to his lymph nodes and bones. It was too far advanced for surgery, chemotherapy or radiation. He was prescribed hormone therapy, and immunotherapy, where white blood cells were extracted from his body, taken to a lab, morphed with nutrients and, three days later, infused back into his body to fight the cancer cells.
My biggest challenge was to study this disease, which men rarely talk about, and realize it was not just his fight but our fight. Life changing decisions were necessary to give him a better quality of life, and I believed a healthier lifestyle would help achieve that. I replaced toxic personal and household items with organic and eco-friendly products, and I used my cooking skills to prepare predominantly organic meals. Euvon was also constantly encouraged to talk about his physical and emotional pain so that he wouldn’t drift to a place where I couldn’t reach him.
Prayer became my way of life, seeking God for wisdom, courage, and hope and, yes, healing. Euvon’s faith and willingness to speak about his journey drew men with prostate cancer to him, giving me the opportunity to encourage their caregivers to prioritize prayer and meditation, to do research before making important decisions, and to take time to refresh themselves.
Then, they can turn up the music and, with the man whom they love, dance as we do and celebrate life.
Once your loved one has made a treatment decision, it will be time to focus on what comes after. If your loved one chooses active surveillance, he will be monitoring his disease regularly with his health provider and your support and active interest will be key. If your loved one chooses active treatment, there will be side effects with which he will have to cope. If you are his partner, some of the side effects will affect you directly. Side effects will depend on treatment type.
Surgery could result in urine leakage and problems with erections soon after surgery. Radiation treatment will also affect erections, but the affects may not happen until later in the treatment. Bowel problems and discomfort with urination can be bothersome. For men treated with hormone therapy, loss of testosterone could lead to hot flashes, weight gain, lack of sex drive and problems with erections. Other physical problems may be less visible, such as brittle bones and risk of heart problems. Help your loved one talk to his doctor about the side effects as there is a great deal of help that can be provided. Remember not all side effects will last forever; often the problem will go away after a few months or years.
It is important to talk after treatment. First, caregivers can encourage their loved ones to talk about their feelings about the side effects. Many men find the side effects upsetting and frustrating. Your knowledge of the side effects can make it more comfortable to have these conversations. Partners of the men with prostate cancer will have the challenge of talking about sexual changes and about navigating a new way of being intimate. Research has shown that couples that are able to talk, share emotions and problem-solve together can do well after prostate cancer treatment.
We have learned from research that partners of men with prostate cancer need support for dealing with the side effects, too. Talking to people you trust can help you stay emotionally steady. Talking to other partners can help, too.
If you find that your loved one or you are feeling overwhelmed and the feeling is not getting better for a few weeks, don’t hesitate to seek help. Your healthcare provider can help you find a counselor or a sex therapist.
My husband, Phil, was diagnosed with prostate cancer at the age of 60. He underwent a radical prostatectomy and radiation. He had other surgeries to treat the side effects from his prostatectomy. I’m a registered nurse by trade, so my caregiving expertise helped me in caring for my husband after his multiple surgeries and dealing with the health care team, doctors and lab results.
Through this experience, I have become more cognizant of how Phil is feeling and have learned to be more patient. I’m protective of Phil, especially when it comes to his physical activity. I have learned to be a good listener and think before responding. I know I don’t always have to have an answer for his questions; sometimes he just needs someone to listen.
I think it’s important to have caregivers go to doctors’ appointments with the person they are caring for. Sometimes it is hard for them to take everything in, and it is better to have two extra ears listening to what the doctor is saying and asking questions they might have forgotten to ask. I also suggest encouraging them to go to support meetings and talking to other men who have dealt with prostate cancer. What worked for me and my husband was to talk about all options and make well informed decisions together.
Since my husband’s prostate cancer has recently come back, the most important thing I have learned is to never give up hope.
Finally, you may feel like you are doing everything for your loved one, but make sure you take care of yourself so that you can continue to be there for them. Make sure you get plenty of rest, eat healthy and take time to do something fun for yourself – such as taking a walk, playing a round of golf, hanging out with friends or just taking a nap. Whatever it is you need to do to recharge, make sure you take the time to do it.
Here is a list of other things you could do:
In the next section you will find a variety of resources to help make sure you are in the best shape to help your loved one as they go through their prostate cancer journey.
410-689-3990 • www.UrologyHealth.org