Tag Archive for: sexual health

Sexual Health After a Cancer Diagnosis: An Expert Weighs In

Sexual Health After a Cancer Diagnosis: An Expert Weighs In from Patient Empowerment Network on Vimeo.

What can ovarian patients do if they have sexual health issues that arise during their patient journey? Expert Dr. Ebony Hoskins explains issues that may come up for some patients and patient advice on how to seek support. 

Dr. Hoskins is a board-certified gynecologic oncologist at MedStar Washington Hospital Center and assistant professor of Clinical Obstetrics and Gynecology at Georgetown University Medical Center. Hoskins sees women for gynecological malignancies, which include the treatment of endometrial, ovarian, vulva, vaginal and cervical cancers.

Download Resource Guide

Descargar Guía

See More from [ACT]IVATED Ovarian Cancer

Related Resources:

Ovarian Cancer and Clinical Trial Participation: What Patients Should Know

Ovarian Cancer and Clinical Trial Participation: What Patients Should Know

Understanding Stages of Ovarian Cancer: What Should Patients Know

Understanding Stages of Ovarian Cancer: What Should Patients Know

What Should Ovarian Cancer Know About Immunotherapy and Targeted Therapies

What Should Ovarian Cancer Know About Immunotherapy and Targeted Therapies

Transcript:

Mikki:

Dr. Hoskins, can you speak to the sexual health following a cancer diagnosis, and which healthcare team member should patients have a conversation with?

Dr. Ebony Hoskins:

I think this is a great question. I think sexual health is something that goes undiscussed unless we ask it, and I think sometimes it’s uncomfortable for the patient, it’s uncomfortable for the provider. But I do talk to a lot of women that have decreased libido or pain, or there’s a lot of dysfunction sometimes after surgery or chemotherapy, and some of it is related to the actual treatment itself. Physiologic meaning how the body functions after treatment, and some could be the fact that there is shame associated with that, sometimes the cancer is involving a sexual organ in that area, and so I think bringing discussion up to your…whether the provider is a gynecologic oncologist and is the person who did the surgery, or the who person gave the chemo or the radiation oncologist. Also, there are mid-level providers who do survivorship, and it just kind of depends on who’s taking care of you after completion of treatment, butI know there are survivorships, and these are times to bring it up. Bring it up to your provider, number one, and they may have resources to refer you to in terms of getting through these difficult times, because I think ultimately you can get your sexual life back. 


Share Your Feedback:

Create your own user feedback survey

Tools for Accessing Quality Prostate Cancer Care

Tools for Accessing Quality Prostate Cancer Care from Patient Empowerment Network on Vimeo.

What factors could impact a prostate cancer patients access to quality, affordable care? This animated video reviews common obstacles and provides tools and resources to help address barriers to care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Living With Prostate Cancer

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Anthony: 

Hi! I’m Anthony, and I’m living with advanced prostate cancer. This is Niki, my nurse.  

Just like prostate cancer doesn’t behave the same way in every patient, each prostate cancer patient has different factors that could impact their access to quality, affordable care. 

Niki: 

Exactly, Anthony. There are obstacles that may affect their potential to manage their cancer.    

These barriers, which are also called health disparities1, are complex and may include things like:  

  • Not having health insurance – or having limited insurance. 
  • Experiencing racism and discrimination. 
  • Language barriers if English is not the language you are most comfortable with2. 
  • Cultural barriers. 
  • Experiencing financial constraints. 
  • A lack of sick time or paid time off in the workplace. 
  • Living in a remote or rural area with limited access to care. 
  • Or, a lack of education or health literacy. 

Anthony: 

And overcoming or addressing these barriers is the goal of health equity.  

Niki: 

Right! EVERYONE should have the access to quality care. And while it isn’t possible to solve these problems overnight, there are resources and support services to help people with prostate cancer. It is important to identify and to discuss your barriers with your healthcare team as they are unique to each individual patient. 

Anthony: 

First and foremost, as we’ve mentioned in prior videos – don’t hesitate to speak up if you feel you are receiving unequal care. You can consider changing doctors if you don’t feel you’re receiving fair treatment, or if you’re not comfortable with your team. 

But the burden to access better care shouldn’t fall on you. Your team is there to help, right, Niki? 

Niki: 

That’s what they are there for! And the best place to start is by reaching out to a nurse navigator or social worker on your team. They may work with you and identify any challenges in your way and offer support resources to guide you in the right direction.  

Anthony: 

Exactly – my social worker helped me find an organization that provided transportation to and from my treatment appointments.  

Niki, are there other services that a nurse navigator or social worker help you connect with? 

Niki: 

Absolutely – let’s walk through some examples: 

  • There are resources that can help with the financial strain of cancer care. Patient assistance programs are in place for people who don’t have health insurance or who are underinsured. They are managed by government agencies, pharmaceutical companies, and advocacy groups; and, in some cases, these programs can help cover the cost of medications or provide them at a discounted rate.
  • Team members who provide emotional support are available to help you such as a social worker, counselor, therapist, or psychologist. 
  • If language is a barrier, translators can be made available to join appointments with you, so you can actively participate in your care discussions and decisions.  And you can ask for materials in the language you are most comfortable with. 
  • And if your job is affecting your ability to get care, many advocacy groups have resources that can support you in advocating for your rights in the workplace. 

Anthony: 

Those are all wonderful support services, Niki. 

I also want to add that if you are having trouble understanding your disease, advocacy groups have excellent materials in patient-friendly language. Download the guide that accompanies this video for a list of recommended organizations. 

Niki: 

That’s right. And, many medical centers have patient advocates available to help you communicate with your team, so you can get the care you need and feel confident in your decisions. Remember, you are not alone! 

We hope this video helped you feel more empowered to ask for resources. Thanks for joining us! 

Anthony: 

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need from Patient Empowerment Network on Vimeo.

 What do care partners need to know to help care for their loved one AND themselves? This animated video reviews the role of a care partner, discusses steps for supporting a loved one and provides tips for maintaining self-care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Living With Prostate Cancer

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Tools for Accessing Quality Prostate Cancer Care

Transcript: 

Anthony: 

Hi! I’m Anthony, and I am living with advanced prostate cancer. This is my nurse, Niki.  

And this is my wife, Jane. She’s not just my wife, she’s also my care partner. From helping with my appointment schedule to communicating with my healthcare team, she works with me to manage my prostate cancer. 

Jane: 

And many of you may be care partners like me. The goal of this video is to help you understand your role and to gain tools to help you support your loved one in their cancer journey. And that includes prioritizing your own self-care.  

Niki, we’ve talked about some of the things I do to help Anthony, but how would you describe the role of a care partner?  

Niki: 

A care partner is someone who works with their loved one on their care every step of the way – from diagnosis to survivorship.  

It’s important to mention that anyone can play this role – friend, family member, or loved one – whomever you trust with supporting your health.  

Jane: 

And there isn’t a single way be a care partner. You can provide support in a way that feels comfortable and natural to you. 

Niki, what are some of the ways a care partner can help?   

Niki: 

Yes – let’s review a few steps. Care partners can assist by: 

  • Learning about your loved one’s prostate cancer, so you can feel confident in participating in conversations and decisions. You can ask their healthcare team for educational resources. 
  • And participating in doctors’ appointments by taking notes and requesting post-visit summaries so that you can review the information presented. 
  • Next, helping your loved one access and use their patient portal and maintaining schedules and organizing medical records. 
  • Listening to your loved one and assist in weighing the pros and cons of care decisions. 
  • And monitoring your loved one’s emotional health. 

Jane: 

That’s a great point, Niki. Sometimes a care partner will notice that their loved one is feeling low or acting differently before they notice anything themselves. Care partners can help communicate these issues to the healthcare team, and can even reach out to a mental health professional or social worker to help.  

Niki: 

And that leads me to the next important step that many care partners often overlook: Taking care of yourself.  

Anthony: 

Right – and as we experienced firsthand, this is essential. Jane struggled with making time for herself after I was diagnosed, and it negatively impacted her health.  

Jane: 

I was totally drained. But adding time for myself on the calendar and keeping up with my self-care appointments made me feel better. What else can you do? 

  • First, prioritize your health by scheduling and keeping your OWN health care appointment. 
  • Continue doing the activities that you enjoy – there are ways to make time in the schedule, even if it doesn’t seem like it.   
  • Find and use strategies that work for you to manage stress, like exercise, reading a book, or anything you find relaxing. Even a short walk with a friend can have a big impact. 
  • And make a list of tasks you can pass off to friends and family members who offer to help.  

Niki: 

That’s great advice, Jane. I’ll also add that caring for a loved one can be challenging – it’s normal to feel a range of emotions. If you’re feeling overwhelmed, talking with someone about how you’re feeling can make a difference. And speaking candidly and openly with other care partners in a support group setting can also provide comfort and peace of mind. 

Just like Anthony sought the advice of a counselor and social worker, it’s important that Jane find that support SHE needs as a care partner. 

Jane: 

We hope this video helped you gain tools and strategies for helping support a loved one – and yourself. 

Anthony: 

Download the guide that goes with this video to review what you learned.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

Living With Prostate Cancer

Living With Prostate Cancer from Patient Empowerment Network on Vimeo.

What follow-up care is important for people with prostate cancer? This animated video discusses support and tools for managing life with prostate cancer.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Tools for Accessing Quality Prostate Cancer Care

Transcript: 

Niki: 

Hi! I’m Niki and I’m a nurse practitioner. And here with me is Anthony, who is living with advanced prostate cancer. 

Anthony: 

Thanks for joining us!  

In this video, we’re going to discuss tools for managing life with prostate cancer.  

Niki:  

Living with prostate cancer means that patients will be monitored for signs that the cancer may be progressing, and assess if it is time to treat the cancer or consider a different treatment plan.   

Anthony:  

But for all patients, an important part of living with prostate cancer is follow-up care. This may include:  

  • Disease monitoring and managing symptoms and side effects, 
  • As well as emotional support. 
  • And, in some cases, creating a survivorship plan with your team.  

Niki:  

Let’s start with disease monitoring: This may include regular exams and testing to keep an eye on your disease progression or recovery. And your individual situation and risk will determine the frequency of your appointments. 

Anthony: 

And for patients like me who have had treatment, managing short and long-term side effects is an essential part of living with prostate cancer.  

One issue that can be challenging for some prostate cancer patients is the impact of treatment on a patient’s sexual function and self-image.  

Niki: 

That’s right, Anthony. It’s important to note that there ARE options that may help manage certain side effects, but you have to talk about them with your healthcare team. While bringing up sexual side effects or bladder control issues to your provider may be difficult, it’s the only way your team can assist you.  

Anthony: 

In my case, I found it easier to communicate my sexual issues in writing, using the patient portal. Plus – don’t forget that care partners can be a resource to help bring up difficult topics. 

Niki: 

Exactly – utilize your resources and communicate in a way that you feel most comfortable! 

And, as we mentioned, there can also be emotional side effects for men living with prostate cancer. Patients may feel stressed about their diagnosis or anxious about their cancer returning or progressing. Working with a health professional like a social worker, counselor, therapist, or psychologist may help reduce anxiety and worry.  

Anthony: 

Right – the other approach that really helped me emotionally was participating in a support group. 

Support groups allow men to meet and interact with others who are living with prostate cancer and provide a platform to share experiences and information. In a support group setting, it may be easier for men to share details that they don’t necessarily want to share with loved ones.  

Niki: 

That’s a great point, Anthony. Studies show that participating in a support group can help cancer patients cope with anxiety and depression 

Anthony: 

It certainly encourages me to know that other men are facing similar challenges. While my support group meets in person, there are online options for people who prefer to connect in a virtual setting.   

Niki: 

But as much as it can be reassuring, the support group format isn’t for everyone. Talk to your social worker or counselor about additional support options to find an approach that feels most comfortable to you.  

Anthony: 

Now that we’ve walked through disease monitoring and resources for emotional support, let’s talk about survivorship. Niki, what is a survivorship care plan?  

Niki: 

Sure. A survivorship care plan organizes your follow-up care. It may include: 

  • Information about the treatment you received. 
  • A follow-up schedule for exams and tests. 
  • A list of potential symptoms and side effects. 
  • And lifestyle recommendations to establish and to maintain healthy habits.  

Your healthcare team, along with a care partner, can help you develop and stick to a plan. 

Anthony: 

That’s great advice, Niki. Now that we have learned some tips for living with prostate cancer, what can you do to participate in your follow-up care?  

Niki: 

  • Make sure to schedule and keep regular visits with your team – including your general practitioner – so that all aspects of your health can be monitored.  
  • Report any new symptoms that you experience – no matter how small. 
  • Next, don’t hesitate to speak up about lingering side effects – including bladder and sexual side effects – so your team can identify solutions. 
  • And ask for emotional support and resources. 
  • Finally, if it’s right for you, talk with your doctor about a survivorship care plan. 

Anthony: 

Thanks for joining us! Be sure to download the guide that goes with this video to access the information we discussed.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials from Patient Empowerment Network on Vimeo.

What do you need to know about prostate cancer clinical trials? This animated video reviews the clinical trial process and provides questions to ask your healthcare team about trial participation.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Tools for Accessing Quality Prostate Cancer Care

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Anthony: 

Hi, I’m Anthony, and I’m living with advanced prostate cancer. And this is my nurse practitioner, Niki.  

Niki: 

Thanks for joining us! 

Without medical research, advances in prostate cancer treatment can’t move forward. Throughout this video, Anthony and I are going to discuss a key part of research: clinical trials. We’ll review what they are and how they work.  

Anthony: 

Niki, what is a clinical trial exactly? 

Niki: 

Excellent question, Anthony. Clinical trials are research studies in people who have a specific condition, or are healthy volunteers, to help find new ways to treat diseases – like prostate cancer.  

Most clinical trials examine the safety and efficacy of medicines, vaccines, and other medical treatments. 

And clinical trials are the main path for cancer treatments to be approved. The U.S. Food and Drug Administration – also known as the FDA – requires that all new medicines and treatments go through the clinical trial process before they are approved. 

So, why would someone consider participating in a trial? Some people choose to participate to access a potential new medicine or treatment that’s not yet approved to see if it helps their condition. And some people want to help move research forward to help others with the same condition – while other people participate for both reasons. 

Anthony: 

That’s right – advancing research through participation is an important path to new options for treating prostate cancer.   

So, Niki – can you explain how clinical trials are designed to answer key questions? 

Niki: 

Yes, of course. Most importantly, each clinical trial has a protocol, which is a document that sets guidelines that define and outline the activities of the clinical trial as well as who may be eligible to participate. 

The early phase trials determine the safety of the treatment, and the latter phases typically examine if the potential therapy is effective. 

All along the way, the study clinic staff  – including nurses, researchers, and study doctors  –check clinical trial participants regularly to monitor for any safety concerns.  

Anthony: 

But to be successful, clinical trials require people to volunteer. And people interested in participating will have to meet the trial criteria to participate, correct? 

Niki: 

Yes, that’s correct, and this can include things like a person’s age, disease stage, prior treatments, and overall health. Remember that everyone’s situation is unique. 

Anthony: 

And people often have misconceptions about clinical trials that prevent them from considering participation. Let’s run through a few common concerns. 

For instance, some people worry that they will receive placebowhich is a non-active medicine  –  if they participate in a clinical trial. Niki, is this true? 

Niki:  

A cancer patient would never receive only the placebo without the current standard-of-care and will always be told that the trial will contain a placebo in advance of their participation. 

Anthony: 

OK, that makes sense. Some people also wonder about the risks and safety of a clinical trial.  Niki, can you share some information about this?  

Niki:  

Great question. Most importantly, research must meet ethical standards to ensure that participants are protected. There is a strict screening and testing process that occurs before a person can participate.  

And, clinical trials are voluntary  – participants have the right to leave the trial at any time.  

Additionally, there is an informed consent process, which ensures that people are fully informed about all potential risks and benefits and helps people understand their rights before taking part.  

Anthony: 

Ok. Thank you for clearing that up. Niki, what about the misconception that clinical trials are just a last-resort treatment option?  

Niki: 

They are not just a last-resort option at all, Anthony. No matter when a patient was diagnosed with prostate cancer, or where they are in their care, clinical trial participation may be an option.  

Anthony: 

So, if someone is interested in participating in a clinical trial or learning more about clinical research – where do they start?  

Niki:  

Your doctor is the best source of information. You can ask your doctor: 

  • What trials are available to me? 
  • Is there a clinical trial that you would recommend for me? Why? 
  • What are the possible risks and advantages of participating in this clinical trial? 
  • Are there costs associated with the trial, and will my health insurance help cover costs? And if not, is there financial assistance available?  
  • Where is the trial being conducted? Is there a clinical trial available to me in my local community? If the trial isn’t nearby or convenient, is there transportation and/or housing assistance? 
  • Finally, if you want to learn more about ongoing prostate cancer research and clinical trials, ask your doctor for a list of credible resources. 

Anthony:  

Be sure to download the guide that accompanies this video to access a list of these questions and to help you review what you learned. 

Niki: 

Thanks for joining us! And visit powerfulpatients.org/pc to access more videos with Anthony and me. 

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan from Patient Empowerment Network on Vimeo.

How can you engage in your prostate cancer care? In this animated video, you will learn about factors that may impact a prostate cancer care plan and tools for partnering with your healthcare team on treatment decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

Living With Prostate Cancer

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Niki: 

Hi, thanks for joining us! I’m Niki, and I’m a prostate cancer nurse practitioner. And here with me is Anthony, who is living with advanced prostate cancer.   

Anthony: 

Throughout this video, Niki and I are going to discuss factors that may impact a patient’s prostate cancer care plan.  

And as we’ve mentioned in previous videos, it’s important to set goals with your team and understand all of your options before deciding on an approach.  

Niki: 

Right, Anthony. So, what could impact a treatment plan decision? Factors may include: 

  • Your age and overall health, including any existing conditions that you may have.
  • Disease-related symptoms may also affect your options.
  • The stage and grade of your prostate cancer and whether you need to be treated right away.
  • Test results, including genomic testing, which identifies the presence of genetic mutations in the cancer and may inform how your cancer will behave. 
  • Possible side effects, both short term and long term, may also affect your choices. 

Anthony: 

And, of course, your personal preference should guide the decision as well as how the option may impact your lifestyle. Be open with your care team about what’s important to you and be clear with your goals, including life plans and personal commitments.   

Here are some tips to take a more proactive role in your care: 

  • Talk with close family members and friends about your options. 
  • Consider a second opinion to help confirm your approach. 
  • Talk to your healthcare team about your condition and care options. And ask them for resources available to you, including financial help and emotional support, when making decisions.​ 
  • You can also visit advocacy group websites that have information about prostate cancer, treatment options, and support groups, to help you understand what’s available.​ 

Niki: 

Those are great tips! It’s also a good idea to ask your doctor what they feel is the best approach for you and why. Remember, there is no one-size-fits all approach, and what works for one person may not work for you. 

Anthony: 

Thanks for joining us! Be sure to download the guide that accompanies this video to help you review what you learned.  

And visit powerfulpatients.org/pc to access more videos with Niki and me.