Plan Ahead For Life With Prostate Cancer
When dealing with prostate cancer, people need to plan for the future. This often applies to financial, medical, and legal issues. Consider these strategies now:
- If you are employed and have health insurance through your employer, consider moving your spouse onto your health plan.
- Discuss an advance health directive. This document allows someone else to make medical decisions for the patient if they are no longer able.
- Suggest that your loved one sign over financial powers of attorney to a family member. This allows another person to make financial decisions for the patient regarding bills and the like if they lose the ability to do so.
Is Stage 4 Cancer Always Terminal
More severe cancers are more likely to be terminal. However, that is never a certainty. For example, the American Cancer Society say the 5-year survival rate for breast cancer that spreads to distant body parts is 27%, or 86% when it only spreads locally.
Determining the severity of cancer and its stage is a complex process. Doctors are still learning about all the factors that affect how cancer develops and affects the body.
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Sample Of Focus Group Trigger Questions
What role has your husband’s primary physician played in this process? Also, has that role changed over time? Were you included in the visits to your husband’s primary doctor? And how did that go?
How about YOUR primary care physician? Have you gone to your doctor since the diagnosis? What were your concerns? Did your doctor answer your needs?
Have you gone to the urologist with your husband? What was that like for you? Do you feel you were included in the decision-making and discussions of treatment options? Was your primary doctor open to discussing your feelings with him/her?
What are some of the things that you want from the doctors and are not getting? Can you describe what you need?
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Utilities For Treatment Complications And Metastatic Cancer
Figure 1 gives boxplots of the time trade-off utilities for each health state by perspective . Each boxplot depicts the median value , the 25th and 75th percentiles , and the range of scores .
Boxplots of utilities for health states elicited from three perspectives .
Several patterns are apparent from the aggregate data depicted in Figure 1. First, for each health state considered, husbands reported lower utilities than did their wives, while the couples utilities fell at a point in-between . Second, for partial and complete impotence and for mild-to-moderate incontinence, the median utility value for the wives was 1.00, indicating that most wives were not willing to trade away any time to avoid these treatment complications. Utility values of 1.00 were observed among 61.9% of wives for partial impotence, among 53.6% for complete impotence, and among 57.7% for mild-to-moderate incontinence. In general, the variability in the utilities was far less for the wives than for the husbands.
Overall, there was a pattern in which the utilities were lower for the more severe treatment complications and for hormonally refractory prostate cancer, for which pain is a concern the range of values for these states was far greater as well. The median utilities for hormonally refractory prostate cancer were 0.50 for husbands and 0.68 for wives, representing an absolute difference of 0.20 and 0.18, respectively, when compared to the closest values for rectal injury.
Why Am I Having Difficulty Talking To My Spouse
Few appreciate the pain, fear, and confusion endured by the spouse or partner. Unfortunately, while attention and treatments are being given to the person with cancer, the spouse is sometimes shunted aside. Little or no time is spent giving the spouse of the cancer patient tips about how to proceed, leaving many to tell me they felt they had to reinvent the wheel. For example, many of those who were diagnosed with cancer say that when they try to tell their partners about some of their fears, the response is, Oh, dont worry about it. Im sure everything will be okay. When this reply is repeated several times, the person with cancer may refrain from communicating his or her fears about the cancer diagnosis and the couple may grow apart.
Instead of remaining quiet and suffering, the person with cancer might find it useful to tell the spouse what is actually needed in direct terms, such as, Ive noticed that when I tell you Im scared, you tell me not to worry. Im thinking you say that because you care for me and you dont want me to worry. But when I tell you how worried I am, what would help me most is a hug and to hear you say how much you love me and that you worry sometimes, too.
Many spouses of cancer patients are greatly helped by having an opportunity to get away from their home responsibilities on a regular basis and having someone other than the person with cancer with whom they can speak about their feelings and concerns.
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Take Care Of Your Mental Health
- Don’t hesitate to ask other family members and friends for help. They will appreciate the opportunity to help.
- Exercise regularly. Your body can fight stress better when you are physically fit. Eat well-balanced meals.
- Try to keep a positive attitude.
- Accept that there are some events you canât control.
- Be assertive rather than aggressive. Assert your feelings, opinions, or beliefs instead of becoming angry, combative, or passive.
- Rest and sleep. Take some time off for yourself. Your body needs time to recover from stressful events. Don’t rely on alcohol or drugs to reduce stress.
What Do We Tell Our Children
The parents I see frequently underestimate the fears and questions their children have. Many worry that talking to children about cancer will frighten them. Parents may not realize how easily children pick up on the emotional state of the adults around them. In most instances, there is no way to hide the fact that something is different once a parent has been diagnosed with cancer.
When a parent is diagnosed with cancer, parents may feel that their children are just fine or are not that interested in what is going on. Some say, Whenever I bring up the cancer, my kids say they dont want to hear about it, that everything will be just fine, or they leave the room.
In such cases, it may be helpful to put an arm around the child while explaining what is happening. There is no need for a long discussion, but there are some essential points to get across:
Mom/Dad was diagnosed with cancer.
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How Do I Say Goodnight When It’s Time To Leave The Hospital
The separation caused by hospitalization is particularly traumatic to the family. They leave the hospital each evening and worry about whether their loved one will ever again lead a normal life, or whether he or she will even leave the hospital. Feeling powerless, they need to give of themselves. Fortunately there are many practical services a patients family and friends can perform while the patient is in the hospitalservices such as feeding, walking, turning, and massaging. These, along with the offer of special foods, a favorite pillow, or a comforting hand, become the routine of the daily hospital visit, giving solace to the family and friends as well as to the patient.
When the patient is critically ill, it is not unusual for at least one family member to be in attendance around the clock. This may mean sleeping in a chair beside the patients bed. To obtain up-to-date information on the patients condition, relatives may rearrange their schedules so as to be present when the doctor makes rounds or a particularly helpful nurse is on duty.
My Spouse Is Finally Coming Home What Lies Ahead
When the patient is at home, functioning well, there are still many opportunities for family and friends to give emotional and practical support. One need only consider what the cancer patient must sometimes be feeling: anxiety about a visit to the doctor, wondering whether a new problem will be discovered or a new treatment recommended, dreading the side effects from the days treatment, and concern about lack of transportation to and from the doctors office. A family member or friend can offer a ride or go with the patient on the bus. If everyone is working and cannot be with the patient during the day, there is still the evening, when the side effects of therapy may have to be endured. Patient, family, and friends all benefit from any means by which love and encouragement can be expressed.
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Seek Support For The Prostate Cancer Fight
Many hospitals offer support groups for prostate cancer patients and their family members. Sharing emotions with sympathetic listeners can offer relief. Plus, listening to others’ experiences may provide you with new insights and coping strategies. You may also want to seek advice and support from social workers. These professionals are specially trained to counsel families of patients with terminal illnesses.
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Hope For A New Beginning
The first theme, hope for a new beginning chronicled the challenges experienced through their partners PCa and the optimism afforded by the invitation to their partner to engage with a community-based football program. Fighting the disease together was described by the women as being a matter of course. They expressed the naturalness of being actively involved, explaining this as a well-established practice in their relationships. They referred to their marriage and to a long life together with their partner, which meant a bond and pledge to stick together through thick and thin. One woman explained:
We have been married for so many years, so its a natural thing that we are two its not a disease he has, its something we need to get through together.
We need to have blood tests taken in a month, and were already on the internet the following day to find out what the blood tests say? You do that too, right?
Well, football in FC Prostate helps them not to become resigned. I mean, just give up or not motivate themselves to do anything. And in that sense, it’s very important it’s there. It also feels like it’s part of the cure, I mean, in order to get better again you mustn’t give up, right?
We said yes to football right away. It came right at a time when everything was falling apart. It saved us.
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Jeanne: Pancreatic Cancer Survivor
Jeanne Czel went from enjoying retirement and playing golf in a benefit tournament in North Carolina, to a month later undergoing what would be one of the most difficult years of her life. It started with an uncomfortable feeling in her chest that she attributed to heart burn or acid reflux, although she had never experienced either before. She was still not feeling right, but had no alarming symptoms such as pain, or weight loss. Normally a very active person, when she started noticing loss of energy, she made an appointment to meet with her gastroenterologist. On July 21, 2011, after undergoing blood work, an MRI and a CT scan, Jeanne received a diagnosis of stage IV pancreatic cancer it had metastasized to her liver and duodenum.
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Connect With An Us Too Support Group
If you are a female caregiver and interested in joining one of our monthly calls or would like to start your own support group, reach out to Terri Likowski, Us TOO Program Director of Support Group Services, at [email protected] and she will add your name to the list.
If you are a partner or spouse supporting someone living with prostate cancer and would like to share your story, you can by going to ProstateCancer.net’s . Tell us how you support your partner through diagnosis and treatment and what advice you would give to others facing prostate cancer.
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Cancer Caregiver Stories: Lisa Matthews Prostate Cancer Spouse
Lisa Matthews suddenly became a caregiver to a cancer patient, her husband, Bruce. He was diagnosed with stage 4A prostate cancer, Gleason score 8/9.
We had an agreement. When we moved six months before and six months after, there was no discussion of divorce or separation because youre not at your best. The same thing happened with the diagnosis.
Its just that tough. Its scary and difficult, and you need to give each other some space, but also give each other that support and love.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Video: Lisa Shares Her Perspective
Dealing with the Diagnosis
How did you process the prostate cancer diagnosis
Not great. I dont think anybody with that kind of news processes it. You start thinking about what it will mean to lose them.
I had three kids, three teenagers with him, and I didnt know what it was going to be.
They told us that he had two or three years. Were far from that now, yay, but it was terrifying and makes me tear up just thinking about it.
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What were the next steps for you
I looked for support and looked for help for me and for Bruce. I found Life with Cancer, a great program in Virginia. It provided all kinds of support.
They have yoga for the patient and the caretaker, and I finally got Bruce to take some yoga classes, and they also had support groups.
Support Groups
Dealing with Treatment
Second Cancers After Prostate Cancer
Its normal to be concerned about getting cancer again. While screening for prostate cancer recurrence is an important part of survivorship, keep in mind that you could develop another type of cancer. In fact, once youre had prostate cancer, your risk of developing certain cancers may even be elevated.
According to the American Cancer Society, men who have had prostate cancer may be more likely to develop bladder cancer, soft tissue sarcoma, small intestine cancer, thyroid cancer, thymus cancer and melanoma. Additionally, radiation therapy itself may increase your risk of developing rectal cancer and acute myeloid leukemia .
Its important to continue regular checkups after cancer treatment and report any new symptoms to your doctor. Take steps to lower your cancer risk and improve your overall health by focusing on a low-fat, plant-heavy diet. Maintain a healthy weight, get plenty of exercise, limit your alcohol consumption and avoid all tobacco products.
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Ernest H Rosenbaum Md
Clinical Professor of Medicine, University of California, San Francisco, Comprehensive Cancer Center Adjunct Clinical Professor, Department of Medicine, Stanford University Medical Center Director, Stanford Cancer Supportive Care Programs National/International, Stanford Complementary Medicine Clinic, Stanford University Medical Center, Stanford, California. More
Ernest H. Rosenbaums career has included a fellowship at the Blood Research Laboratory of Tufts University School of Medicine and MIT. He teaches at the University of California, San Francisco, Comprehensive Cancer Center, was the cofounder of the Northern California Academy of Clinical Oncology, and founded the Better Health Foundation and the Cancer Supportive Care Program at the Stanford Complementary Medicine Clinic, Stanford University Medical Center.
His passionate interest in clinical research and developing ways to improve patient care and communication with patients and colleagues has resulted in over fifty articles on cancer and hematology in various medical journals. He has also participated in many radio and television programs and frequently lectures to medical and public groups.
Keeping Health Insurance And Copies Of Your Medical Records
Even after treatment, its very important to keep health insurance. Tests and doctor visits cost a lot, and although no one wants to think of their cancer coming back, this could happen.
At some point after your cancer treatment, you might find yourself seeing a new doctor who doesnt know your medical history. Its important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment.
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Reclaiming My Lifeand Helping Others Do The Same
Ron Scolamiero and his wife, Laurie, with two of their sons, Nick and Michael
This went on until 2012, when my oncologist said he was part of a clinical trial for prostate cancer patients like me living with non-metastatic castration-resistant prostate cancer. I was lucky in that my doctor was the lead physician on the second phase of this trial. After I began the treatment, my PSA levels held steady, and there was no evidence of the cancer spreading.
Since then, Ive had two tumors appear where my prostate used to beand surgeries to remove them, which have resulted in a whole lot of difficulty with my ability to urinatebut no tumors have spread throughout my body. I have continued taking the drug, and I felt incredibly grateful when it was approved by the FDA.
Im 73 now, a father of five sons and grandfather of three. Most days I dont even think I have cancer, even though I still take my pills every morning. Thanks in large part to my wife, Laurie, I have managed to live my life as if I didnt have this disease. And even though it is always lurking in the back of our minds, we dont let it get to the forefront to take over our lives.
What is at the forefront for me is doing whatever I can to help other men facing a prostate cancer diagnosis. Ive come a long way since those early days of shame, traveling two towns over to get my prostate cancer mailings.