Prostate Cancer: What To Do After Diagnosis

If you've been told you have localized prostate cancer, you and your family are probably wondering what to do next. After getting a prostate cancer diagnosis, getting a second opinion is a smart move. Your first doctor is skilled, but they might not focus on prostate cancer treatment. Talking to a medical oncologist who knows about prostate cancer treatment options can be very helpful. They can offer new insights and help you choose the best treatment.

When you meet a prostate cancer specialist for a second look, be ready to share your diagnosis details, test results, and the first treatment plan. The specialist might suggest more tests or a different care path. By comparing these opinions, you can work with your doctors to create a treatment plan that fits your needs and likes.

If the second opinion is quite different from the first, you should talk more with your first doctor. Understand the reasons behind their treatment plan and how they saw the test results. Ask about the research or guidelines they used.

Sometimes, you might need a third opinion to be sure about your treatment. Remember, your health is the most important thing. Taking time to understand your diagnosis and treatment options fully can really help.

Understanding the Extent of Your Prostate Cancer

After you get diagnosed with prostate cancer, your doctor will figure out how far it has spread. They use tests like blood tests, biopsies, and scans for this. These tests show the size and location of your tumor and if it has spread.

A prostate-specific antigen (PSA) blood test is often the first step. High PSA levels might mean you have cancer, but other things can affect it too. A biopsy is then done to confirm the diagnosis and find out how aggressive the cancer is. 

Scans like transrectal ultrasound (TRUS), magnetic resonance imaging (MRI), and bone scans are also important. They show the tumor's size, location, and if it has spread. This helps your doctor know the stage of your cancer, which can be early or more advanced.

Knowing how far your prostate cancer has spread is key for your doctor to plan your treatment. At your first meeting, your healthcare team will go over the test results with you. They will help decide the best treatment, which could be watching and waiting, surgery, radiation therapy, or a mix of these.

Preparing for Your First Oncology Appointment

If you've just been told you have prostate cancer, your first meeting with an oncologist can be a lot to take in. To make the most of this important meeting, being prepared is key. Here are some tips to help you get ready for your first oncology appointment.

First, bring a notebook and pen. Your oncologist will share a lot of information about your diagnosis, treatment options, and what comes next. Writing down what they say ensures you don't miss any key points. It's also smart to bring a trusted friend or family member. They can listen, ask questions, and offer support.

Before you go, write down any questions you have for the oncologist. You might wonder about the stage and grade of your cancer, the side effects of treatment, or how long recovery takes. Having these questions ready will help you use your time with the doctor wisely.

Also, collect any medical records you have, like biopsy results, imaging scans, or notes on previous treatments. Giving these to your oncologist helps them understand your situation better. This way, they can create the best treatment plan for you.

Lastly, don't hesitate to ask for more details or explanations if something doesn't make sense. This is about your health, and you should feel informed and in control throughout.

Cancer Treatment Options

Possible cancer treatment options include active surveillance, radiation, hormone therapy, surgery, chemotherapy, and cryotherapy. Your healthcare team will look at your situation closely. They will suggest the best treatment plan for you by looking at your age, Gleason score, biopsy results, cancer stage, symptoms, and overall health. 

Active surveillance means watching the cancer closely with regular tests and check-ups. It's often suggested for men with low-risk cancer that doesn't cause symptoms.

Radiation therapy is another option. It uses high-energy beams to kill cancer cells. It can be done externally with a machine or internally with implants. It's often used for cancer that's only in the prostate.

Hormone therapy, or androgen deprivation therapy (ADT), lowers male hormones that help cancer grow. It can be used alone or with other treatments. This is often used for advanced or spreading cancer.

Radical prostatectomy is removing the whole prostate gland. It can be done in different ways, including open, laparoscopic, or robotic-assisted surgery. This is an option for men with cancer that's only in the prostate.

Chemotherapy might be suggested for men with advanced or spreading cancer. Cryotherapy, which freezes cancer cells, is also a treatment choice.

The best treatment for you will depend on your situation. Your cancer care team will help create a plan that offers the best chance for good results.

Paying for Prostate Cancer Treatment

Prostate cancer treatment can be expensive, but there are ways to make it easier. After finding out you have prostate cancer, it's key to know what your insurance covers. Work with a patient benefits specialist to get the most from your insurance.

First, ask your insurance for a full list of your medical benefits. Take this info to your first meeting with an oncologist. There, you'll meet a patient benefits specialist. They can explain your insurance and help with costs for prescriptions and other treatments.

Many people find patient benefits specialists very helpful with the money side of prostate cancer treatment. These experts know a lot about insurance and can give advice to use your coverage well. They can also point you to financial help programs to reduce prostate cancer treatment costs.

It's crucial to be proactive about your insurance coverage and look into financial support options. With the help of a patient benefits specialist, you can worry less about money and focus more on getting better from prostate cancer treatment.

Typical Recovery Time for Prostate Cancer

About 80 to 85 percent of prostate cancers are found early, in stages I, II, or III. Many men with these early stages can be cancer-free after five years. However, cancers found later in stage IV, that have metastasized (spread) beyond nearby areas to lymph nodes, organs or bones in other parts of the body, have a lower five-year survival rate of 28%, which is much lower than localized prostate cancers.

The five-year survival rate for all prostate cancer patients is nearly 100 percent. This means five years after diagnosis the average prostate cancer patient is about as likely as a man without prostate cancer to still be living. Ten years after diagnosis, the average prostate cancer patient has a relative survival rate of 98 percent, just 2 percent less likely to survive than a man without prostate cancer. This figure goes down to a 95% survival rate fifteen years after diagnosis, which is 5 percent less likely to survive than a man without prostate cancer.

Support Resources for Prostate Cancer Patients and Loved Ones

Getting diagnosed with prostate cancer can feel overwhelming for both the patient and their family. But, you don't have to face it alone. There are many support resources out there to help you and your family deal with the challenges you might face.

Your prostate cancer care team is your main source of help. They include doctors, nurses, financial experts, and social support professionals. They know a lot about how cancer affects daily life and can guide you and your family through it. Their support is key as you deal with the emotional and practical sides of your diagnosis and treatment.

Genetic testing is also something to think about for prostate cancer patients and their families. Your care team can help you with genetic testing to see if you have genes that make you more likely to get prostate cancer. Knowing this can help you and your family manage your health better and watch for any future cancer risks.

There are also many prostate cancer support groups and organizations out there. These offer a community, emotional support, and advice from others who have gone through similar things. The American Cancer Society and ZERO – The End of Prostate Cancer are two big groups that provide lots of support services and resources.

During your prostate cancer journey, taking care of yourself and your loved ones is key. Building strong relationships, handling the costs of treatment, and keeping a healthy lifestyle can all help you do better. Remember, you're not alone, and there are resources and support out there to help you and your family get through this tough time.

Monitoring Metastatic or Advanced Prostate Cancer

If you have metastatic or advanced prostate cancer, you'll need more frequent check-ups. This type of cancer spreads to other parts of the body. You'll see your doctor often, based on your symptoms and treatment.

Your care plan will focus on tracking the cancer and managing symptoms. Regular check-ups, PSA tests, and imaging scans are key to keeping an eye on your health. You might get hormone therapy, radiation, or chemotherapy to manage your cancer.

Hormone therapy is often used for metastatic prostate cancer. It lowers testosterone to slow cancer growth. You can get injections, pills, or surgery like orchiectomy for this treatment. Your doctor will pick the best treatment for you based on your cancer stage and needs.

It's important to talk openly with your healthcare team. This way, they can quickly address any changes and keep your treatment working well. Your follow-up care aims to support and manage your metastatic or advanced prostate cancer.

Follow-up Care and Monitoring After Prostate Cancer Treatment

After you finish prostate cancer treatment, it's key to keep up with regular check-ups. These visits help watch your health and look for any signs of cancer coming back. You'll likely have exams, PSA blood tests, and maybe other tests like digital rectal exams or imaging scans. How often you need these visits depends on your cancer's stage and treatment type. Your doctor will help create a plan that suits your needs for ongoing health.

For some men with low-risk prostate cancer, watching closely without immediate treatment might be an option. But for those with more serious cancer, treatment is usually needed. The American Society of Clinical Oncology suggests a schedule for check-ups that includes PSA tests every three to six months, a digital rectal exam yearly, and a prostate biopsy every two to five years. If your tests or symptoms show the cancer is getting worse, you'll need treatment to try to cure it.

Creating a survivorship care plan with your healthcare team is key. This plan will set out when you need follow-up exams and tests. It will also talk about any long-term side effects from your treatment. It's important to talk to your doctor if you have any worries or new symptoms between visits.

Good follow-up care and monitoring are crucial for prostate cancer survivors. Working closely with your healthcare team and talking openly helps you manage your care well.

Patient-Initiated Follow-up (PIFU): Taking the Lead

In the world of prostate cancer care, some healthcare systems now offer a patient-initiated follow-up (PIFU) or open access follow-up (OAFU) approach. This empowering model puts you, the patient, at the forefront of managing your own care. Once your doctors are satisfied with your progress, you take the lead in arranging your follow-up appointments.

With PIFU, you can schedule a visit whenever you have a change in your health that concerns you or if you simply feel it's time for a check-up, without waiting for a pre-scheduled appointment. This system allows you to take an active role in monitoring your condition and ensures you can access the necessary medical attention when you need it, without unnecessary clinic visits.

The benefits of this patient-centered approach are significant. Studies have shown that patient-initiated follow-up in early-stage cancer can positively impact fear of recurrence and healthcare utilization. Additionally, research has evaluated self-management and remote surveillance programs for post-treatment care in prostate cancer, showcasing the potential for improved outcomes through novel follow-up strategies.

When implementing PIFU, healthcare providers must ensure patients have the necessary tools, knowledge, and support to manage their own care. This includes educating patients on symptom monitoring, self-care management, and the process for booking appointments when needed. Patients with complex health issues or low knowledge about managing their care may not be suitable for the PIFU model, and a more traditional follow-up approach may be more appropriate.

By embracing the PIFU model, prostate cancer survivors can take an active role in their healthcare journey, accessing the care they need when they need it. This patient-centric approach not only empowers individuals but also has the potential to improve overall outcomes and optimize healthcare resources.

Coping with Anxiety During Follow-up Appointments

Many patients find it hard to deal with anxiety after prostate cancer treatment. Follow-up appointments can make you feel stressed and worried. You might worry about the cancer coming back or getting worse. In fact, up to 40% of cancer patients feel anxious, and 10-20% might have panic disorder.

Talking to your healthcare team about your worries is key. They can offer guidance, support, and explain why you need these visits. Having people you trust to talk to or getting counseling can really help you cope with cancer's emotional effects.

Your follow-up appointments are important for checking on your health and making sure you're recovering well. Your healthcare team is there to support you every step of the way. Over 1 in 3 people with or who have had cancer show signs of post-traumatic stress or PTSD. By facing your anxiety and getting the right support, you can feel more confident and at ease during follow-ups.

Dealing with emotional challenges during prostate cancer follow-ups is common, but there are ways to handle it. Anxiety and distress are more common in cancer survivors than in healthy people, and fear of recurrence is a big worry for many. With the right support and resources, you can learn to manage your anxiety and focus on your health and well-being.

Prostate Cancer Recurrence and Monitoring

Even after treatment, prostate cancer can come back. Up to 40% of men will see a return, often spotted by rising PSA levels. The chance of recurrence depends on the cancer's stage, grade, treatment type, Gleason score, PSA levels, age, and health. Men with higher-risk cancer are more likely to see it come back.

After surgery, a PSA above 0.2 ng/mL signals a return. For radiation therapy, a PSA increase of 2 points from the lowest level hints at recurrence. Your healthcare team will watch your PSA levels and may order more tests to find where and how far the cancer has spread. Catching a recurrence early and treating it is key for the best results.

Signs of prostate cancer coming back include rising PSA levels, urinary issues, bone pain, fatigue, and weight loss. Telling your doctor about any new or worrying symptoms is crucial for checking if the cancer has returned. Finding a recurrence early means you can get treatment faster and might have more options.

Tests like MRI, PET scans, or bone scans help see how far and where the cancer has spread for the right treatment. If the cancer is still in the prostate, treatments like surgery, radiation, or ablative therapy might be used. For cases where PSA goes up but there are no visible tumors, active surveillance might be the choice.

Hormone therapy, often with enzalutamide, is a common choice when other treatments don't work or aren't possible. If the cancer spreads to nearby areas, treatments like pelvic radiation, hormone therapy, or lymph node surgeries might be needed. For cancer that spreads to bones, hormone therapy is often the go-to, sometimes with other drugs or chemotherapy.

Managing Side Effects and Emotional Support

Prostate cancer treatment can have lasting effects on both the body and mind. Men often feel shocked, fearful, and angry after getting diagnosed. Some struggle to accept their diagnosis, feeling denial, frustration, and disappointment. The choice of treatment can cause stress, especially worries about side effects like changes in sexual, urinary, and bowel functions.

Hormone therapy, a common treatment, can lead to weight gain, loss of strength, and changes in sex life, making some men feel like they've lost something important. It can also cause mood swings, emotional ups and downs, and anxiety, especially with PSA test results. After treatment, many men feel isolated, no longer having regular check-ins with doctors. Advanced prostate cancer can make planning for the future a worry.

Depression is a common issue for men with prostate cancer, showing as hopelessness, loss of interest, and anxiety. Activities like exercise and relaxation techniques, such as yoga or meditation, can help manage depression and anxiety. It's important for men to seek support from doctors, nurses, counselors, or support groups.

Support groups have been shown to help men make decisions, improve their quality of life, and possibly even live longer. The UCSF Prostate Cancer Support Group offers monthly meetings for patients and their families. The UCSF Symptom Management Service also helps men with anxiety, depression, or other symptoms from their cancer diagnosis or treatment.

Every prostate cancer treatment has side effects that can affect a man's sex life. Meditation, like mindfulness meditation, can reduce stress and anxiety from cancer diagnosis and treatment. Learning about prostate cancer and its treatments can also help men feel hopeful and optimistic.

Fatigue is a common symptom in men with advanced prostate cancer, affecting their daily life, mood, and relationships. To manage fatigue, it's recommended to stay active, get emotional support, plan activities when you have energy, rest well, eat well, try complementary therapies, and ask for help when needed.

Lifestyle Changes and Reducing Recurrence Risk

After getting diagnosed with prostate cancer, making healthy lifestyle changes can greatly improve your future health. Studies show that being active, quitting smoking, and eating well can lower your chance of the cancer coming back. These changes can also make you live longer.

Being active is key. Men who walk for one to three hours a week have an 86% lower risk of aggressive prostate cancer. Doing more than three hours of hard exercise can cut the risk of dying from prostate cancer by 61%. Exercise helps keep you at a healthy weight and prevents bone loss, which is a side effect of some treatments.

Stopping smoking is also crucial. Smoking can make prostate cancer grow and spread faster. Heavy smokers face a higher risk of dying from the disease. But, quitting for 10 years can lower your risk to the same as never smoking.

Eating well is important too. A diet full of fruits, veggies, and whole grains can help. But, eating too much sugar, meat, and fat can increase the risk of dying from prostate cancer. Even though we need more studies, eating a balanced diet is a smart choice.

By changing your lifestyle, you can play a big part in lowering your risk of prostate cancer coming back. Remember, it's important to be consistent and make small changes that you can keep up with over time.

Pain is a big issue for men with advanced prostate cancer, especially if the cancer spreads to bones. Managing pain includes cancer-specific treatments, pain medicines, radiotherapy, bisphosphonates, surgery, nerve blocks, and other therapies.

Urinary problems can happen due to prostate cancer pressing on the urethra or affecting the bladder, causing issues like trouble emptying the bladder, leaking, blood in the urine, or kidney problems. Treatment options for these problems include medicines, catheters, surgeries, and other interventions based on the issue.

Conclusion

Prostate cancer is a treatable cancer with high survival rates when diagnosed early. Getting a prostate cancer diagnosis and treatment can be tough. But, with help from your medical team and family, you can manage your condition well. Understanding your cancer, looking at treatment options, and sticking to follow-up care and lifestyle changes helps you recover and lowers the chance of it coming back.

It's important to be open with your doctors and ask for a second opinion if needed. This ensures you get the best care possible. Being careful with your follow-up care, living a healthy lifestyle, and getting support can help you live better as a prostate cancer survivor. In fact, 97% of men with prostate cancer live 15 years after diagnosis, no matter the treatment options.

By staying informed and taking an active role in your care, you can get the best outcome for your prostate cancer journey. The journey is hard, but with your medical team and loved ones by your side, you can face it and aim for a positive outcome.

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