Preparing for Your Prostate Cancer Treatment Discussion: A Patient's Toolkit

 


Preparing for Your Prostate Cancer Treatment Discussion: A Patient's Toolkit

IPCSG Newsletter Companion Article | April 5, 2025

In our previous article, we discussed how the doctor-patient relationship is evolving in the digital age, with patients increasingly bringing their own research to medical consultations. This companion piece provides practical tools to help you prepare for and actively participate in treatment discussions with your healthcare providers.

Before Your Appointment

1. Gather Your Medical Information

Being informed about your specific diagnosis helps you ask targeted questions and better understand treatment recommendations. Bring copies of:

  • Your pathology report (Gleason score/Grade Group)
  • PSA history and trend
  • Results of any imaging studies (MRI, CT, bone scan)
  • List of all current medications and supplements

Pro Tip: Create a dedicated folder (physical or digital) for organizing all your prostate cancer-related documents to reference during medical discussions.

2. Research Your Condition

Understanding the basics of your diagnosis provides a foundation for meaningful conversations:

  • Learn about your risk category (low, intermediate, high)
  • Familiarize yourself with common treatment options for your specific situation
  • Research potential side effects of different treatments

Pro Tip: "Research and read up on prostate cancer from trusted resources" before your appointment to feel more confident during your visit. Reliable sources include the American Cancer Society, National Comprehensive Cancer Network (NCCN), and Prostate Cancer Foundation.

3. Prepare Your Questions

Create a prioritized list of questions tailored to your situation. Some essential questions include:

  • What is my risk category, and what does it mean for my prognosis?
  • What treatment options are appropriate for my specific situation?
  • What are the side effects of each treatment, and how likely am I to experience them?
  • How might each treatment impact my quality of life?
  • Are there clinical trials I should consider?
  • What happens if we delay treatment?

Pro Tip: "You should feel free to ask any question, no matter how small it might seem". Write questions down in advance and bring the list to your appointment.

4. Consider Using a Decision Aid

Decision aids are tools designed to help patients understand their options and clarify their personal values related to treatment choices:

  • Ask your doctor if they use prostate cancer decision aids in their practice
  • Explore online decision aids from reputable organizations
  • Consider apps specifically designed for prostate cancer decision-making

Pro Tip: Some newer decision aids are "uniquely designed to allow patients with prostate cancer to evaluate different treatment modalities, outcomes and side effects based on their personal preferences and pre-treatment health state".

5. Bring a Support Person

Consider bringing a trusted friend or family member to your appointment who can:

  • Take notes while you focus on the conversation
  • Help you remember questions you wanted to ask
  • Provide emotional support
  • Offer a second perspective on what was discussed

Pro Tip: Brief your support person on your concerns and questions beforehand, so they can help ensure all your points are addressed.

During Your Appointment

1. Use the Ask-Tell-Ask Approach

This communication strategy helps ensure you get the information you need:

  • Ask: Start by asking the doctor what they think about your situation
  • Tell: Share your research, concerns, and preferences
  • Ask: Follow up with specific questions about options and recommendations

Pro Tip: This approach "emphasizes the provider's role as an interactive guide rather than a one-way supplier of information" and helps create a more balanced conversation.

2. Request Visual Aids

Visual information can help clarify complex concepts:

  • Ask for diagrams of treatment approaches
  • Request risk statistics presented visually
  • Ask to see before/after images of procedures when appropriate

Pro Tip: Research shows effective risk communication often uses "icon arrays, numbers and verbal explanation" to communicate general and personalized risks of side effects.

3. Clarify Medical Terms

Don't hesitate to ask for explanation of any terms you don't understand:

  • "Could you explain what that term means?"
  • "I'm not familiar with that procedure. Can you describe it in simpler terms?"
  • "Would you mind writing down that term so I can research it later?"

Pro Tip: "If you don't understand something your doctor has said, you can always ask them to clarify what they mean".

4. Discuss Your Values and Priorities

Treatment decisions should reflect what matters most to you:

  • Share your priorities regarding quality of life versus length of life
  • Discuss specific activities or functions you're most concerned about preserving
  • Be honest about your concerns regarding specific side effects

Pro Tip: Different patients value outcomes differently. For example, "if patient A already has erectile dysfunction, they likely will not be concerned about further risk of ED... whereas patient B may have perfect erectile function and place more value on preservation of sexual function".

5. Evaluate Treatment Information in Context of YOUR Life

Remember that statistics apply to groups, not individuals:

  • Ask how your age, health status, and other medical conditions might affect outcomes
  • Discuss how your daily activities and lifestyle might be impacted by different treatments
  • Consider how your support system may influence your ability to manage side effects

Pro Tip: Ask your doctor: "If I was your brother... what advice would you give? What do you think I should do?" This can sometimes help physicians offer more personalized guidance.

After Your Appointment

1. Review and Organize Information

As soon as possible after your appointment:

  • Review any notes taken during the visit
  • Organize new information with your existing medical records
  • List any follow-up items or additional questions that arose

Pro Tip: If you find you have additional questions after your appointment, don't hesitate to contact your healthcare team.

2. Research Additional Information

Based on what you learned:

  • Look up any new terms or concepts
  • Research specific treatment options discussed in more depth
  • Explore patient experiences with recommended treatments

Pro Tip: Consider joining the IPCSG or other support groups to learn from others who have faced similar decisions.

3. Consider a Second Opinion

Second opinions are standard practice for major medical decisions:

  • Ask your doctor for a referral to another specialist
  • Bring all your records to the second opinion appointment
  • Compare recommendations and discuss any differences

Pro Tip: "If your questions haven't been addressed, you're allowed to find a second opinion".

4. Track Your Decision Process

Document your thought process:

  • Note pros and cons of each option as you understand them
  • Record questions that arise and their answers
  • Document your evolving preferences

Pro Tip: This documentation can help you track your "decision conflict" and "decision regret" - important factors in long-term satisfaction with treatment choices.

Special Tools and Resources

Decision Aids

Several organizations offer specialized decision aids for prostate cancer:

  • Personal Patient Profile-Prostate (P3P): This tool "asks men about their socio-demographic status and a set of personal factors known to impact decision making" and has been "shown to be efficacious in reducing decisional conflict".

  • Web-based Personalized Risk Calculators: Some newer tools provide "personalized risks on side effects" that are "communicated with icon arrays and numbers".

Question Prompts

The American Cancer Society offers comprehensive question lists for each stage of prostate cancer care that can be downloaded and customized.

Support Programs

Consider connecting with:

  • IPCSG Support Groups: Share experiences with others going through similar situations
  • Us TOO: A nonprofit providing support and education for those affected by prostate cancer
  • ZERO - The End of Prostate Cancer: Offers support resources and educational materials

Conclusion

Effective preparation for medical discussions can significantly improve your treatment experience and outcomes. By gathering information, clarifying your values, and actively participating in shared decision-making, you position yourself as an equal partner in your care.

Remember that while information is powerful, each patient's situation is unique. Use these tools to support—not replace—meaningful conversations with your healthcare providers who understand the specifics of your case.

Sources:

  1. American Cancer Society: Questions to Ask About Prostate Cancer. https://www.cancer.org/cancer/types/prostate-cancer/detection-diagnosis-staging/talking-with-doctor.html
  2. Talk With Your Doctor about Prostate Cancer | Talk That Talk™. https://www.talkthattalkpc.com/talk-with-your-doctor/
  3. Patient-centered discussions about prostate cancer screening: a real-world approach - PubMed. https://pubmed.ncbi.nlm.nih.gov/21079223/
  4. Taking shared decision making for prostate cancer to the next level: Requirements for a Dutch treatment decision aid with personalized risks on side effects - ScienceDirect. https://www.sciencedirect.com/science/article/pii/S2214782923000064
  5. A personalized decision aid for prostate cancer shared decision making - PMC. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8720209/
  6. Implementation of prostate cancer treatment decision aid in Michigan: a qualitative study | Implementation Science Communications. https://implementationsciencecomms.biomedcentral.com/articles/10.1186/s43058-021-00125-w

Comments

Post a Comment

Popular posts from this blog

A 10-Second Steam Blast: The New Weapon Against Prostate Cancer?

Image
Vanquish® Water Vapor Ablation System, Francis Medical Steams Out Prostate Cancer The Vanquish® Water Vapor Ablation System, developed by Francis Medical, Inc. , represents an innovative approach to treating prostate cancer using water vapor (steam) to ablate cancerous tissue. This minimally invasive technique aims to target and destroy prostate cancer cells while minimizing damage to surrounding healthy tissue, potentially reducing common side effects associated with traditional treatments like surgery and radiation, Mechanism of Action:  The Vanquish system utilizes the thermal energy stored in sterile water vapor to ablate cancerous prostate tissue. During the procedure, a catheter is inserted through the urethra into the prostate, delivering water vapor directly to the targeted tissue. As the vapor condenses back into liquid, it releases stored thermal energy, effectively destroying the cancerous cells. This method is designed to respect the prostate's natural boundaries, ...
Read more

Researchers develop low-cost device that detects cancer in an hour | ScienceDaily

Image
Summary Sanjay S. Timilsina , currently Lead Scientist, StataDx, a spinoff from Wyss Institute, former Postdoctoral Fellow at Harvard Medical School and the Wyss Institute at Harvard University, PhD from UTEP Department of Chemistry & Biochemistry, and XiuJun Li full Professor in the Department of Chemistry and Biochemistry and of Forensic Science, & Environmental Science and Engineering, at the University of Texas at El Paso (UTEP) have developed a new portable device for cancer detection that offers several advantages over traditional methods: Key Features: - Low cost (a few dollars per device, <8 cents per assay) - Provides results in about 1 hour (vs. 12-16 hours for traditional methods) - Approximately 10 times more sensitive than traditional methods - Portable and doesn't require specialized instruments - Can detect both CEA colorectal and PSA prostate cancer biomarkers - Uses a "paper-in-polymer-pond" structure to analyze blood samples How it works: - U...
Read more

Cancer patients and doctors team up to change how cancer drugs are tested | Fox News

Cancer patients and doctors team up to change how cancer drugs are tested | Fox News foxnews.com Associated Press For cancer patients, the harsh side effects of powerful drugs have long been the trade-off for living longer. Now, patients and doctors are questioning whether all that suffering is necessary. They’ve ignited a movement to radically change how new cancer drugs are tested, with the U.S. Food and Drug Administration urging drugmakers to do a better job at finding the lowest effective dose, even if it takes more time. Advances in treatment mean millions of people are surviving for years with incurable cancers. Jill Feldman, 54, of Deerfield, Illinois, has lived 15 years with lung cancer , thanks to that progress. Her parents both died of lung cancer months after their diagnoses. But her cancer drug causes joint pain, fatigue and mouth sores that m...
Read more