Tag Archive for: cancer support

Patient Empowerment | Advice From an Ovarian Cancer Expert

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How can you feel empowered in your ovarian cancer care? Dr. Heidi Gray highlights the importance of allowing others, like your doctor, to help alleviate fear and regain a sense of control while navigating your journey with hope.

Dr. Heidi Gray is the Division Chief of Gynecologic Oncology and the Director of Gynecologic Oncology Clinical Trials at UW Medicine. Learn more about Dr. Gray.

Download Resource Guide

See More from INSIST! Ovarian Cancer

Related Resources:

Essential Testing Following an Ovarian Cancer Diagnosis

Essential Testing Following an Ovarian Cancer Diagnosis

 How Do Biomarkers Impact Ovarian Cancer Treatment and Care?

How Do Biomarkers Impact Ovarian Cancer Treatment and Care?

 Understanding Your Role in Your Ovarian Cancer Care

Understanding Your Role in Your Ovarian Cancer Care 

Transcript:

Katherine Banwell:  

Dr. Gray, as a provider, how do you empower patients who have been diagnosed with ovarian cancer?  

Dr. Heidi Gray:  

That’s such an important question. I think that it’s incredibly important. My role is to help alleviate fear. I think when patients have a new diagnosis of cancer the rug’s been pulled out from under them. The patient describes it like being in a car crash.   

You’re numb. It’s hard to even know where to go next. There’s so much fear, because you don’t know what’s next and the loss of control. So, I really spent a lot of time trying to just address that and acknowledge but also help move people forward, because I think it’s always helpful to be able to have a plan or have a sense of what’s going to happen next or have some control around that.  

Of course, I also need to instill a lot of hope for patients. You never know what any one patient’s journey is going to be. The way information is, as I said, you can get all of these information and numbers, and it can be completely scary. Any one patient, their journey is different from the next one from the next one, and it’s very important to be hopeful and thoughtful about what that might look like or thinking about what that might look like. 

Expert Perspective | The Value of Empowering Endometrial Cancer Patients and Care Partners

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How can patients feel empowered after an endometrial cancer diagnosis? Dr. Hinchcliff emphasizes seeing a GYN oncologist, asking questions, and bringing a care partner to appointments for support and understanding key decisions.

Dr. Emily Hinchcliff is a Gynecologic Oncologist at Northwestern Medicine. Learn more about Dr. Hinchcliff.

See More from Evolve Endometrial Cancer
 

Related Programs:

What Questions Should Patients Ask About Endometrial Cancer Testing?

What Questions Should Patients Ask About Endometrial Cancer Testing?

 Questions to Ask About Endometrial Cancer Clinical Trials

Questions to Ask About Endometrial Cancer Clinical Trials

Endometrial Cancer | What Is Personalized Medicine?

Endometrial Cancer | What Is Personalized Medicine?

Transcript:

Katherine Banwell:  

As a provider, Dr. Hinchcliff, how do you empower care partners and patients who have been diagnosed with endometrial cancer? 

Dr. Emily Hinchcliff:  

So, I think that one of the most important things about a diagnosis of cancer is to develop the relationship with your physician. I think that it is truly a partnership, and it is an incredibly important thing as you think about the next steps in your treatment. For someone who’s diagnosed with endometrial cancer – or, honestly, cancer in general – making sure that you’re seeing a cancer specialist in obstetrics and gynecology – it can actually be sometimes a little bit difficult. 

You might have gotten your diagnosis with a general OB/GYN, but it’s very important to see a GYN oncologist – a cancer-specific doctor – because we’ve actually shown that patients who see GYN oncologists are more likely to get guideline-appropriate care – so, care within what we think of as the right standard – and then they tend to do better with their cancer. So, that’s kind of the first step, is finding that doctor and developing the relationship with them.  

The second thing that I would say is that you should ask questions. Bringing people to your appointments to have an extra set of ears is always helpful. Taking notes and trying to keep track yourself of what was talked about in your appointment, I always encourage my patients to do, but really, asking questions. So, making sure that you know what those molecular tests are that your doctor is sending, making sure you know, once they’re sent, what your results were and how that might change what your treatment will be. 

Now, you don’t need to go and get a degree in biology or go to medical school. I think that that’s a lot to ask someone going through a cancer journey, but it is really important that you understand where those key decision points might be made because that allows you to feel not only like your own advocate, but that you have some ownership of those decisions and you understand why the decisions are being made in the way that they’re being made. 

Cancer Survivorship | The Positive Impact of Peer Support

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Cancer Survivorship | The Positive Impact of Peer Support from Patient Empowerment Network on Vimeo.

Dr. Kathleen Ashton and Erica Watson, a cancer survivor and patient advocate, discuss the importance of giving and receiving peer support for people with cancer and its positive impact.

Dr. Kathleen Ashton is a board-certified clinical health psychologist in the Breast Center, Digestive Disease and Surgery Institute at Cleveland Clinic. Learn more about Dr. Ashton.
 
Erica Watson is a breast cancer survivor and patient advocate.
 

Related Resources:

What Does Cancer Survivorship Mean?What Does Cancer Survivorship Mean? Cancer Survivorship | Ongoing Healthcare and Follow-Up

Cancer Survivorship | Ongoing Healthcare and Follow-Up

 Becoming Empowered: Navigating Obstacles to Empowerment That Can Lead to Better HealthNavigating Obstacles to Empowerment That Can Lead to Better Health 

Transcript:

Katherine Banwell:

Dr. Ashton, what can you tell us about the importance of peer-to-peer support in cancer care and survivorship?  

Dr. Ashton:

I think peer-to-peer support is so important for survivors.  

It really gives survivors the chance to talk with other people who really understand what it’s like going through this process. So, as a professional I can tell patients the science and give them tools and what works, and their oncologists can tell them what’s important for them to do, but the lived experience is so important. So, in our group program they get some of that peer-to-peer support. And when Erica says, “Hey, it really helped me to bring someone with me to my scan,” a patient really hears that in a different way than when your professional tells them.  

So, it’s just that much more meaningful. There’s another program at the Cleveland Clinic called   4th Angel, and it’s a national program that any patient can take advantage of, and it matches you with a peer mentor.  

And they often check in by phone with each other, someone who’s been through a very similar experience, and patients often find that incredibly helpful. And many patients that move into survivorship, then they become a mentor and they’re able to help another patient.  

And that really feels good to be able to give back in that way.  

Katherine Banwell:

Yeah, that’s wonderful. Erica, you have a family history of breast cancer, so you’ve been really vigilant in your care over the years. What advice do you have for other patients and family members facing a cancer diagnosis? Where do you find your strength?  

Erica Watson:

Well, I got it from a handful of sources. I learned a lot on my faith. I talked to my family members who were diagnosed with breast cancer and that are currently living. I was not afraid to ask questions. I cried a lot. I just really leaned heavily on my medical team.  

I feel like it is so important as Dr. Ashton was saying to be able to reach out or connect with someone that has actually lived the experience, because I was one of those women. I heard it from the medical team, but they were leaning on science, and I needed someone that actually went through what I was going through.

That allowed me to understand and to trust what they were telling me. Not that I didn’t trust my medical team, but the family members or anyone else that I leaned on to support actually lived the life that I was getting ready to live, experienced what I was getting ready to experience. So, that really helped me a lot.  

Katherine Banwell:

Yeah. As you navigated care, were there any obstacles or hurdles that you faced?  

Erica Watson:

Well, the main one that sticks out to me today was as an African American woman, I didn’t feel as if I had a lot of resources that were catered to me and my needs. And so, that kind of stifled my search for research or for resources, because I didn’t have an experience with women that looked like me, that talked like me, that lived like me, that would have experienced the hair loss like I experienced, my skin changes with the sun.  

So, those were the obstacles that I faced, and it was tough. Of course, I had my family to lean on, I have my aunt my sister, but there are so many women out there that don’t have family members that have gone through breast cancer, and I feel so like it’s necessary for us to be able to see and to experience the diversity in that area. 

We make up a huge demographic, but we are just not represented the way that I feel like we should.  

Katherine Banwell:

Yeah, I absolutely agree. And I know that the medical community is trying to reverse this issue; they’re trying to make it easier and more supportive for people of all colors and races. Why do you think it’s important for survivors to actually be an advocate and help other people as they navigate cancer?  

Erica Watson:

I believe the most important reason is just so that they know that they’re not alone. We can, as a breast cancer survivor, I know it was – my first response was to just go into a shell and hide.  

I didn’t want to share it with anyone. Of course, my family did not, they would not have understood, and this was before reaching out to my sister and my aunt. But yeah, just so that we’re not alone, to know that there are other women out there that are experiencing and feeling the exact same thing that we are experiencing and feeling; the questions, the concern, the guilt, the fear, we just need to be able to know and connect in that way. So, I just – yeah, I’m so passionate about that, and that’s it.  

Katherine Banwell:

Yeah. It’s so helpful to know you’re not alone in how you’re feeling, in some of the symptoms you’re having, to know that other people have experienced the same thing is vital. 

Mental Health

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There’s a stunning statistic that one in four cancer patients experience depression (https://www.cancer.gov/about-cancer/coping/feelings/depression-hp-pdq). Depression isn’t just feeling sad, as is natural with a cancer diagnosis. Depression is a real medical diagnosis with symptoms, which can range from lack of interest, weight gain and insomnia to suicidal ideation. Most importantly, depression is a condition with a wider than ever range of treatments. 

I love the lyric from Taylor Swift’s new song: “I’m so depressed I act like it’s my birthday every day.” That’s MY flavor of depression: I have always seemed to be the happiest, least mental health-impacted person you’ve ever met, but that’s not the case. My outside did not match my inside. In 2006, I sought help and began taking antidepressants. I’m so fortunate that i was already taking care of my emotional and mental health when I got my cancer diagnosis in 2010. We adjusted, rather than starting from scratch. 

After getting the right balance of medication and therapy, I felt so much better that I pledged I’d wear a sign saying “I’m on psych meds” if it would help someone else. So that’s this message. It’s okay to NOT be okay. It’s NOT okay to not try to get help. 

If you have tooth pain, you’re going to the dentist, right? Even better, you go for regular cleanings and exams to prevent more serious issues. And, you do your own part to keep problems at bay by brushing and flossing. There are mental health equivalents to all those parts of dental health, and this list will help you find resources. 

Crisis Resources:

Therapy Resources:

  • SonderMind– matches you to a licensed therapist and offer in-person and online therapy. Many insurance/health plans accepted. Talk to a SonderMind Wellness Coordinator: (844) THERAPY.
  • TalkSpace: Online mental health treatment options, including psychiatry. Many insurance/health plans accepted.
  • GrowTherapy: Online mental health treatment options, including psychiatry. Many insurance/health plans accepted.
  • Headway: Online mental health treatment options, including psychiatry. Many insurance/health plans accepted.
  • Therapy for Black Girls: Therapy for Black Girls is an online space dedicated to encouraging the mental wellness of Black women and girls. Therapist listing for both in-person and virtual therapy. Many therapists are covered by health plans/insurance.
  • National Queer and Trans Therapists of Color Network: The directory is an interactive digital resource that helps QTPoC locate QTPoC mental health practitioners across the country.
  • Latinx Therapy: On-line directory and digital resource that helps locate culturally attuned and inclusive therapy for Latinx community. Some therapists accept insurance/health care plans.
  • Psychology Today – Therapist Finder – A tool to find therapists near you with filters for specific issues like cancer-related psychological distress.
  • Valera– Online mental health treatment options, including psychiatry. Many insurance/health plans accepted.
  • 7 Cups – Provides online therapy and free support from volunteers trained in emotional support.
  • Mental Health America– General mental health resources that can be very useful for those dealing with cancer-related stress.
  • GoodTherapy– Another therapy directory that helps individuals find therapists with specific experience supporting cancer patients and their families.

Cancer Support Resources:

Five Ways the PEN Empowerment Lead Program Can Support Your Cancer Journey

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Our Empowerment Lead program is here to support patients and families around important topics and to provide navigation for the path to empowerment. Our Empowerment Leads are highly passionate empowerment ambassadors volunteering from around the U.S., engaging with the PEN network of cancer patients and care partners, and serving as a direct channel of empowerment.  

1. Utilize the PEN Text-Line

By texting EMPOWER to +1-833-213-6657, you can meet someone with your same condition  and  receive personalized support from our Empowerment Leads. Whether you’re a cancer patient, or a  friend or loved one of a cancer patient, PEN’s Empowerment Leads will be here for you at every step of your journey.

2. Watch PEN Videos

Taking a proactive role in your well-being as a patient is of utmost importance for optimal health outcomes. And PEN videos are a trusted source when seeking out information from cancer experts, patients, care partners, and PEN Empowerment Leads. Whether you’re a newly diagnosed patient, care partner, long-time cancer patient, or other concerned patient advocate, PEN videos provide a valuable way to learn about cancer patient stories, testing information, questions to ask your cancer specialist, how to support and be supported as a care partner, ensuring that your patient voice is heard, and more.

3. Read PEN Blogs

Our PEN blogs are a rich source of support information on a wide range of topics for cancer patients and care partners. The blogs serve as another way to gain knowledge and advice for navigating and coping with your cancer journey. Some recent topics have included mental  health advice, financial support resources, nutrition and exercise tips, COVID-19 vaccine guidelines, patient stories, caregiver advice, genetic testing, and cancer news updates.

4. Download and Use Our Activity Guides

Initiated as a patient and care partner tool at the beginning of the COVID-19 pandemic, our PEN-Powered Activity Guides continue as a way to stay connected and to relieve stress during your cancer journey. Packed with information and support resources, the Activity Guides provide content including clinical trial information and experiences, patient stories and lessons learned, advice from care partners, healthy recipes, music playlists, coloring pages, and more. If you’re a busy cancer patient or care partner, the Activity Guides are easy to print to take with  you to read during travel and waiting room time for cancer care appointments.

5. Learn About Our PEN Empowerment Leads

If you don’t have time to watch a video or to read a blog right away, you can browse our list of PEN Empowerment Leads. You can easily see the community that each Empowerment Lead serves  and read a short bio about their experience as a cancer patient or care partner.

By taking advantage of our PEN Empowerment Lead resources, cancer patients and care partners can gain knowledge and confidence to navigate their own cancer journeys.

Lamar’s Story

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Lamar’s Story | Renal Medullary Carcinoma from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma patient and active-duty U.S. Air Force member Lamar Valentina shares important pieces of his RMC journey. Watch as he discusses the symptoms that led to his RMC diagnosis, his treatment journey, things he found helpful for support, and his hopes for how to educate others about sickle cell trait and RMC for better health outcomes.

Transcript:

Lamar Valentina:

I’m Lamar Valentina, I was diagnosed September 25th, 2019. What prompted me to be checked was I had a lump that was literally right here, it kind of protruded out, and I had some really bad abdominal pain as well as flank pain on my left side, it was really unbearable, so those three things combined — I got really concerned and decided to go to the hospital.

I’m in the military, active-duty military, so working out and kind of taking breaks, it’s common for me to get lower back pain, but it was definitely a different lower back pain, and then with the added lump that was between here, it was literally right here. And this kind of has actually gone down, so that’s a sign from my oncologist that says that the cancer is shrinking based off treatment. So diagnosed on September 25th, 2019. I started chemotherapy on October 11th of 2019. There were a few options. I had some friends that work in cancer centers, and my ex-wife actually works with foundation on medicine, and they had connections at Dana Farber in Boston, and that’s where she lives with my son who’s 12, who will be 13 in March. Starting chemo on October 11th, the first cycle that I was on was Carboplatin-Taxol, I did that for about six cycles, and there was shrinkage, but due to COVID, we took a break to give my body a break, ’cause chemotherapy did a big number on my body, I lost a lot of weight, obviously my hair and my eyebrows, my hair is still gone, my eyebrows are still gone, and it just…

With my body adjusting to chemotherapy was pretty rough, but I handled it well, so actually that break… During that time, I said about three months, two months through my break, I want to say we did that until about February, and then we started back up in April, so about three months and that was more so because of COVID and creating delays in between. But once we got a scan and we saw that there was a little bit of growth, it wasn’t alarming growth, but there was some growth, but it still hadn’t gone to where it was when I first was diagnosed, so that was the good thing that it wasn’t as aggressive as it’s known to be.

Throughout this whole ordeal, it’s been family, friends. Throughout the beginning, you know you have a lot more support and it kind of balances out, which is fine, ’cause I’m a pretty introverted person anyway, but I have a great immediate circle that’s there to share positive affirmations and positive vibes and positive energy. And that’s honestly what helps me through that, along with music and staying productive, I’m still actively in school and still in the Air Force, active duty, I make 14 years, and next month in March, and my hope is that through this campaign and through everything else, we just continue to raise as much awareness as possible. I was always told growing up that sickle cell trait really was nothing to worry about, unless if I had a child with someone else that had the sickle cell trait, and then our child would be fully diagnosed with sickle cell, so I’ve never really even thought to be concerned about having a trait of sickle cell, so my hope is that through this campaign and through other everything else, we’re able to raise as much awareness as possible to grab the right people’s attention that are going to continue to put forth the proper research to help save more lives and of course, to live my life as long as possible, for as long as I’m here, and if I can hopefully inspire and motivate others along that through my hardships, hopefully that’ll help them to create a survival guide for their own lives moving forward. Whatever it is they may go through, but especially with RMC.

For anyone who’s recently diagnosed, my best advice is lean on your support team, your support circle, it’s going to be very, very hard, don’t be so quick to Google everything, but do try to make sure that you’re as informed as possible about your diagnosis about RMC, and then finding a community that fits. That’s exactly what I did as soon as I was diagnosed, of course. I did what I’m telling people not to do by Googling and everything, because once you Google everything, you’re going to get everything negative under the sun, but it is very important to be informed properly based off what you’re going to be going through, you’re down for the moment, but you’re not out, you just got a dig deep and make sure the people around you are sharing that positive energy and those positive vibes to continue to provide you with the motivation and then at a strength and the courage to fight, and it’s also okay to deal with the emotions that you may be going through. Some people feel that, “Oh, you got to be strong.” Being strong doesn’t mean not crying or not feeling sad, you’re going to feel every emotion imaginable once you are diagnosed.

So, it’s okay, the best thing is to do is to process that and hopefully have an outlet or somebody that you can share that with, and you can kind of unload it ’cause you don’t want to compartmentalize those feelings and those emotions because it doesn’t go anywhere, it just kind of festers, it’s like sweeping it under the rug, it’s going to pile up and just really, really become a lot.

So really, really lean on your support system, and if you don’t have a support system, I guarantee if you research it like I did. Reaching out to Cora Connor has been amazing, ’cause they put me in touch with other people that were going through what I’m going through, and talking with people who are going through, who can relate to what you’re going through is way different than talking to people who don’t really have an idea of what it is that you’re going through, not saying that they can’t help and they can’t be there for you, but it’s just, it’s a different type of comfort that comes from knowing someone that is literally sharing the same symptoms or going through the same treatment, or may have gone through the same treatment or the same procedures that you may be up against, and you can ask some questions and get a realistic answer from somebody with experience as opposed to getting assumptions or things from other people, but I would say stay positive. Stay as positive as possible. Don’t give up hope. Don’t give up hope.

It doesn’t have to be a significant other for other people that are going through if you’re single, it could just be your best friend, it could be a friend. Motivation and inspiration comes from the most strangest of places, and I’ll be witnessed. I’ll be the first to admit to that on the top of having someone, but there’s times when you often feel alone and you kind of think about how this impacts and affects them, those closest to you as well. So, I think taking that into consideration is something that people who are really diagnosed as well to guess we are the center of it, were the ones who actually are going through it, but the people that love and care about you, they’re going through it in a way as well too, they’re definitely affected and impacted by this too.