Tag Archive for: cancer diagnosis

From Cancer Diagnosis to Healing: 21 Tips and Resources for Body, Mind, and Spirit

Last month, I quietly marked a significant milestone—20 years since my breast cancer diagnosis. It’s a strange thing, this “20-year cancerversary”. It feels like a lifetime ago, yet it still feels raw and surprisingly recent. The shock of that day, hearing the words “you have cancer”, and the surreal weeks and months that followed, remain forever etched in my memory.

Looking back, I often think about the things I wish I had known back then—truths and lessons that could have eased the journey or offered comfort in moments of anxiety. That’s why I want to share some of those insights with you if you’re beginning your own cancer journey. I hope these tips will provide guidance, strength, and perhaps a little light to help you navigate the challenges ahead.

1. Become Your Own Best Advocate: Take charge of your healthcare journey. Ask questions, seek second opinions, and clearly communicate your needs and concerns to your medical team. Don’t hesitate to advocate for information that is tailored to your specific situation, age, and lifestyle.

Further Reading: Patient Advocacy: Understanding Your Illness – Patient Empowerment Network

2. Educate Yourself: Learn about your specific cancer type, treatment options, and the latest research. Knowledge is power and can help you make informed decisions. Use trusted sources like your medical team, cancer organizations, and support groups. Understand that the right information, provided at the right time, empowers you to make informed decisions.

Further Reading: How to Read and Understand a Scientific Paper – Patient Empowerment Network

3. Participate in Shared Decision-Making: Shared Decision Making (SDM) means you and your doctor work together to make choices about your healthcare. You’ll learn about the pros and cons of different treatments, how likely they are to work, and what side effects might happen. Don’t be afraid to ask lots of questions until you feel comfortable with the options presented to you.

Search here for articles on SDM.

4. Explore All Treatment Options: Discuss various treatment approaches with your doctor, including standard medical treatments, clinical trials, and complementary therapies like acupuncture or massage alongside your regular medical care.

Search here for articles on clinical trials.

5. Understand Cancer-Related Fatigue (CRF): Cancer-related fatigue is different from the tiredness you feel after a long day. It’s like having your battery completely drained, and no amount of sleep or rest seems to recharge it. This kind of fatigue can be overwhelming and make it difficult to do even simple everyday tasks. It’s important to talk to your doctor if you’re experiencing this, as there may be ways to manage it and improve your energy levels.

Read How To Cope With Cancer-Related Fatigue for more tips and information.

6. Be Aware of “Chemobrain”: Understand that cancer treatment can affect cognitive function. This is often called “chemobrain,” even if you didn’t have chemotherapy. It can feel like a mental fog, making it hard to remember things, focus, or think clearly. This can be frustrating, but it’s important to know that many people experience this. Staying mentally and physically active can help your brain recover. This could include things like puzzles, reading, socializing, and light exercise.

Further Reading: Is Chemobrain Real? Coping With Cancer-Related Cognitive Changes – Patient Empowerment Network

7. Manage Your Energy Bank: Be mindful of your energy levels. Think of your energy as a bank account – balance energy expenditure with rest and relaxation to avoid “overdrawing” your reserves. Prioritize tasks and schedule activities for times when you have more energy. Build in rest breaks throughout the day.

8. Engage in Light Exercise: Even though you may not feel like it, regular light exercise can help reduce fatigue and improve your mood. This doesn’t have to be anything strenuous – a short walk, some gentle stretching, or chair exercises can make a difference. Start small and gradually increase your activity level as you feel able. Listen to your body and don’t push yourself too hard. Even a little bit of movement can go a long way in improving your overall well-being.

Watch: What Role Does Exercise Play in Cancer Treatment? – Patient Empowerment Network

9. Eat a Healthy Diet: Nourish your body with a balanced diet that supports energy levels and avoid processed foods. Choose a variety of fruits, vegetables, whole grains, and lean proteins. Drink plenty of water throughout the day. Dehydration can worsen fatigue and other side effects. If you’re struggling with taste changes or nausea during treatment, consult an oncology dietitian for personalized advice and support. They can offer strategies to manage these side effects and maintain adequate nutrition.

Further Reading: Nourishing Your Body and Mind: Nutritional Advice For Cancer Survivors – Patient Empowerment Network

10. Prioritize Your Well-being: Facing cancer can be incredibly stressful, and it’s easy to get caught up in appointments, treatments, and worries. But taking care of your emotional and mental health is just as important as taking care of your physical health. Engage in activities that bring you peace and relaxation, such as meditation, spending time in nature, or pursuing hobbies. Even a few minutes of quiet reflection can help calm your mind and reduce anxiety. There are lots of apps and online resources to guide you.

11. Build a Support System: Connecting with others can make a huge difference in your emotional well-being and help you cope with the challenges of cancer. Support groups offer a safe space to connect with others who truly understand what you’re going through. If you’re not feeling up to in-person meetings, online forums and communities can be a great way to connect with others from the comfort of your home.

Check out this list of Online Cancer Support Groups and Organizations by Type of Cancer – Patient Empowerment Network

12. Allow Yourself to Feel Your Emotions Fully: It’s perfectly normal to have a rollercoaster of emotions when you’re dealing with cancer. You might feel scared, sad, angry or frustrated. Don’t judge yourself for having “negative” emotions. They are a natural part of the human experience, especially during difficult times. Allowing yourself to feel your emotions fully is an important part of processing what you’re going through.

13. Tune into Your Feelings: Taking time to check in with your emotions can help you understand your feelings with more awareness. Think of it like taking your emotional temperature. Set aside a few minutes each day when you can be still and undisturbed. Take a few deep breaths, inhaling slowly and exhaling fully. This helps to calm your mind and body. Ask yourself “What am I feeling right now?” Don’t overthink it, just notice the first emotion that comes to mind. Name the emotion without judgment. For example, “I’m feeling anxious,” or “I’m feeling sad.” Pay attention to any sensations in your body associated with the emotion. Is your chest tight? Are your shoulders tense? Do you feel a knot in your stomach? Don’t try to change the feeling or push it away. Simply acknowledge it and let it be.

Important Note: If the emotion intensifies or becomes overwhelming, stop the exercise and try again later. You can also seek support from a therapist or counselor if you’re struggling with difficult emotions.

14. Write Down Your Feelings: Sometimes, it’s easier to make sense of your emotions when you put them into words. Journaling can be a powerful tool for processing your experiences and navigating the emotional ups and downs of cancer. Looking back on your journal entries can also help you see how far you’ve come and recognize your own strength and resilience.

Further Reading: The Power of Journaling During Cancer Treatment – Patient Empowerment Network

15. Pay Attention to Grief Triggers: Anniversaries of your surgery, diagnosis, and other cancer-related milestones can reawaken difficult memories and emotions. Be mindful of these dates and plan ahead for ways to cope with potential emotional triggers. This might involve scheduling time for self-care, talking to a loved one, or engaging in a relaxing activity. You might also consider creating a meaningful ritual to acknowledge the anniversary or milestone such as lighting a candle or visiting a special place.

Further Reading: Grief, Loss, and the Cancer Experience – Patient Empowerment Network

16. Accept Anxiety as a Normal Response: Anxiety is a natural response to a challenging situation. It’s like an alarm system that gets triggered when your body perceives a threat. In this case, the threat is the cancer diagnosis and all the unknowns that come with it. When you acknowledge and accept your anxiety, you can start to develop healthy ways to manage it. There are many effective strategies for coping with anxiety, such as relaxation techniques, mindfulness practices, and exercise. However, if you find that your anxiety is overwhelming or interfering with your daily life, reach out for help and support.

Further Reading: Coping With Scanxiety: Practical Tips from Cancer Patients – Patient Empowerment Network

17. Identify Your Body’s Stress Response: Stress can manifest in many ways, and often, our bodies give us clues long before we consciously register feeling stressed. Learning to recognize your unique stress signals can help you manage anxiety and take steps to calm yourself down. For example, when you’re anxious, you might find yourself taking short, shallow breaths, or your heart might pound or feel like it’s skipping beats,  Once you’re aware of your physical stress response, you can take steps to interrupt it. This might involve deep breathing exercises, progressive muscle relaxation, or mindfulness techniques.

18. Acknowledge Emotional Trauma: Cancer is more than just a physical disease; it can be a deeply emotional and psychological experience. It can shake your sense of self, challenge your beliefs about the world, and bring up difficult emotions like fear, vulnerability, and grief. Recognizing the emotional trauma of cancer validates your experience and allows you to give yourself the compassion and care you deserve.

Further Reading: Cancer Trauma: How To Know If You’re At Risk and Key Strategies for Recovery – Patient Empowerment Network

19. Honor Your New Reality: For many of us cancer is a life-altering experience. It can shift your priorities, change your outlook on life, and even redefine who you are. It’s important to acknowledge and honor this new reality, even as you grieve for the life you had before. Even in the face of adversity, there is potential for growth and transformation. Cancer can teach you valuable lessons about resilience, gratitude, and the importance of living each day to the fullest.

Further Reading: Finding Your New Normal: 7 Steps To Navigating Life After Cancer – Patient Empowerment Network

20. Find the Joy: Don’t let cancer overshadow the beauty and goodness in your life. Actively seek out experiences that bring you happiness and fill you with gratitude. Spend time outdoors, breathe in the fresh air, and appreciate the beauty of the natural world. Share laughter, stories, and hugs with the people who matter most to you.

Watch: Meditation on Joy – Patient Empowerment Network

21. Live with Purpose: A cancer diagnosis can be a profound wake-up call, prompting you to re-evaluate your priorities and consider what truly matters in life. This is an opportunity to connect with your deeper values and live each day with intention and purpose. Cancer may strip away the illusion of certainty, but it also illuminates what truly matters. Let this heightened awareness guide you as you rebuild your life, find hope in unexpected places, and honor the resilience you never knew you had. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

Wishing you strength and healing on your journey.

Essential Testing Following an Ovarian Cancer Diagnosis

 

What essential testing should follow an ovarian cancer diagnosis? Dr. Heidi Gray explains that patients should undergo both genetic testing, which identifies inherited risk factors, and molecular testing, which evaluates specific tumor mutations.

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

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Patient Empowerment | Advice From an Ovarian Cancer Expert

Understanding Your Role in Your Ovarian Cancer Care

Understanding Your Role in Your Ovarian Cancer Care 

Transcript:

Katherine Banwell:  

Dr. Gray, what essential testing should people with ovarian cancer have following diagnosis?  

Dr. Heidi Gray:  

That’s a great question. We’re learning more and more about this disease. Therefore, we also have a lot more variety of tools to look at to be able to match better therapies for patients. Historically, when patients were diagnosed with ovarian cancer, it was based on just the pathology at the time of surgery and some lab testing called the CA-125, which many patients with ovarian cancer are familiar with.  

The next level of testing that we are doing for ovarian cancer is really to look at how aspects of either the patient themselves or of the cancer themselves that might better match therapies. So, the first line of testing we recommend for all women for ovarian cancer is genetic testing. Genetic testing is blood-based testing.  

It is testing for if you have an inherited gene or a mutated gene, that’s being passed along through families that may have put you at risk of developing ovarian cancer and potentially breast cancer. That is recommended for all women and patients who have been diagnosed with ovarian cancer because we know about 15 percent to 20 percent of these cancers are due to a genetic cause. 

The other level of testing that we have incorporated is what we call molecular testing. Other terms for it are “tumor-based testing” – I think you use the term “biomarker testing.” Some people use the term “precision medicine,” and that is a little different. That is testing that is actually testing the tumor itself. It’s looking at a variety of different factors but particularly looking at mutations in the cancer itself, in the tumor itself, so different than the genetic, which is an inherited thing. This is in the tumor itself. There is some overlap of that.  

But it has an expanded profile of different targets that we can match therapies to. 

Katherine Banwell:  

Would you define biomarker testing for us? 

Dr. Heidi Gray:  

Yeah. So, biomarker testing is just that. It is more expanded testing, particularly tumor testing is one aspect of it. There can also be some blood testing, genetic testing. Then there is a new realm also of looking at cell-free DNA or ct or tumor DNA in the blood as well too that is gaining a lot of interest. 

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients?

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Why is it important to empower patients? Expert Dr. Charlotte Gamble from MedStar Health discusses the benefits of patient empowerment and methods she uses to help build trust and to empower her patients.

See More from Empowering Providers to Empower Patients (EPEP)

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Dr. Emily Hinchcliff: Why Is It Important for You to Empower Patients?

Charise Gleason: Why Is It Important for You to Empower Patients

Charise Gleason: Why Is It Important for You to Empower Patients?

Dr. Craig Cole: Why Is It Important for You to Empower Patients?

Dr. Craig Cole: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Charlotte Gamble:

Yeah, this is such a good question and like actually, goes to the reason why I chose to have a career in medicine and like why I’m doing this. I think that it’s really important to understand that patients are their own individuals and not the tumor, they’re the cancer that they have, that they have whole lives and are whole people before they walk into our clinic doors. And to understand that there is a whole life that they have had and will continue to have alongside a cancer diagnosis.

And so one of the things that I think is so important is when I talk to patients to really understand the condition of their lives, to understand how long it took them to get to my office, to understand who is with them or who is not with them in the room to understand what their fears are, what experiences have they had with the healthcare system prior to meeting me.

How do I regain trust or earn trust, in the context of a healthcare system and a, you know, political system that is, pretty fraught. And I think being able to listen, is one of the greatest skills that I’ve been taught and have really tried to work on. And listening in and of itself I think helps to empower patients because they find their voice because either the doctor listening to them and asking them to tell me what’s happening.

And so the mere act of me listening, this is something that doctors need to do, that helps I think, patients find their voice. I think what I had mentioned previously also was making sure that they have people in their lives that are aware of what’s happening in terms of their cancer diagnosis and treatment plan that can be a support to patients.

I think getting these diagnoses can be traumatizing and recognizing the trauma that having a cancer diagnosis, can have, and the ripple effect that it has on not only the patients, but those that surround them is really important to recognize the gravity of that. And that while I might be seeing 20, 25 patients with cancer in my clinic or operating on three to four patients in a day, these are, really seminal moments in a person’s life. And recognizing the gravity and the responsibility that I have as their provider to not only listen to them, but make sure that they are surrounded by love and compassion, by people in their lives. And making sure that they feel that they have the language to share their diagnosis with their loved ones and to bring their loved ones on for the ride, is really important. So, I don’t know. I listen. I try to make sure that they’ve got folks that are there and present. And, I think that that’s really kind of how I try to center patients in this whole cancer care process.

Dr. Sikander Ailawadhi: Why Is It Important for You to Empower Patients?

Dr. Sikander Ailawadhi: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can healthcare providers empower patients? Expert Dr. Sikander Ailawadhi from the Mayo Clinic explains the mindset and approach he takes to patient empowerment and questions that he asks patients to put them in better control of their care.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

Dr. Emily Hinchcliff: Why Is It Important for You to Empower Patients?

Charise Gleason: Why Is It Important for You to Empower Patients

Charise Gleason: Why Is It Important for You to Empower Patients?

Dr. Craig Cole: Why Is It Important for You to Empower Patients?

Dr. Craig Cole: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Sikander Ailawadhi: 

Patient empowerment is an extremely important aspect of how we deliver healthcare and how our patients consume healthcare. Let’s take a step back and think about it this way. A patient was diagnosed with cancer. This is not what they were expecting. This is not what their families, their loved ones, anybody was expecting. It throws a wrench in their life plans, and suddenly they have lost control, not over their health, in a lot of cases, even over their lives, over their families, their jobs, everything. What can we do to empower our patients and make them feel in control?

A statement that is very frequently used by a lot of people, frankly, is, well, the patients need to be their own advocates. Yeah, but I really strongly feel if a patient does not even know what to ask, how are they going to ask the right question? How do they know what is the right question to even put up to the clinician? So in my opinion, the biggest thing, in fact, in some ways, even the least thing I can do to empower my patients is to educate them, is to make them aware about the disease, about the treatment, both the benefits and the side effects, about long-term outcomes.

I do offer to my patients, for example, “Are you interested in knowing about prognosis?” Some patients don’t want to hear about it, but some were afraid to ask. If they know what they have to expect, they are able to plan better. They are able to get in control better. So for me, the number one way of empowering the patient is spending time with them, educating them, making them aware about their disease, about their treatment, and about the long-term expectations of living their life after the cancer diagnosis.

Tools for Living with Cancer and COVID-19

Tools for Living with Cancer and COVID-19 from Patient Empowerment Network on Vimeo

Breast Cancer Network Manager Mary Leer highlights the importance of a previous interview with Dr. Shaji Kumar focused on COVID-19 and cancer. In the original interview, Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns, vaccine concerns are also addressed and key factors are given for cancer patients, survivors, and care partners.  

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Transcript:

Mary Leer:

Hello, my name is Mary Leer, and I am the Patient Empowerment Network’s [PEN’s] Network Manager for the Breast Cancer Network.  

 As PEN’s Breast Cancer Network Manager, I was proud to sit down with noted Mayo Clinic expert, Dr. Shaji Kumar. The interview helped me think deeply about my own experience as a cancer survivor and how it relates to my experience living through the pandemic that is still around us all. As cancer patients, we’ve had to live with multiple uncertainties and make decisions that can quite literally and figuratively be painful. We’ve had to make decisions about cancer treatment with our medical team, and we’ve had to deal with the fact that it is in our own best interest to at times take a path that we do not want to take in the name of healing ourselves and living a healthier life. We have learned to live with options and making choices with outcomes that are not certain, our experience and roles as survivors and as caregivers can make it hard sometimes difficult to understand the decisions of others who are hesitant or resistant to getting a vaccine. So I listened and learned from Dr. Kumar discussion about the importance of getting vaccinated to reach a significant percentage of our population. He shows compassion for those whose fear of the pandemic has led them to a decision to turn away from getting vaccinated, perhaps out of fear, distrust of medicine and anger about government impinging on personal rights, or perhaps, of course, their own personal health journey, please implore others to listen to the interviews Jeff and I did with Dr. Kumar. 

Dr. Kumar gave us very clear advice.  He answers many of the questions about COVID-19 that cancer patients, and our community have been asking and frankly worrying about. As you listen to the interviews on PEN’s website, you will hear his voice of reason, make it clear how critical it is for cancer patients, indeed all of us to get vaccinated for the sake of our own and for others’ health. As he states there are uncertainties about aspects of vaccination, such as the strength and length of one’s individual protective immune response, but the bottom line is that cancer patients especially need to be vaccinated to protect their health, even if one is well post-treatment. If still in cancer treatment or if one has had the COVID-19 illness, he told us to discuss the optimum time to get vaccinated with your medical team. He truly gave a clear message that there is solid evidence for the efficacy, safety of approved covid vaccines. Listen carefully and share Dr. Kumar’s interview responses with your cancer community and with your family. His answers address lingering questions my family and I had about COVID and cancer, the bottom line, these interviews with Dr. Kumar are once again, a way of giving us the tools to compassionately help ourselves and others through this COVID-19 health crisis. 

How Stress Can Play a Role at the Time of a Cancer Diagnosis

How Stress Can Play a Role at the Time of a Cancer Diagnosis from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff and Summer share how they’ve overcome and continue to overcome the stresses that follow a cancer diagnosis. 

Although, surprised at the time of her diagnosis Summer remained positive. As a care partner at the time of diagnosis, Jeff was fearful because he knew very little about myelofibrosis. To counteract this stress, he armored hisself with knowledge from various resources. Both Jeff and Summer use their hobbies as an outlet whether it’s nature photography or teaching improv classes to further relieve stress. 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657. 

Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns

Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns from Patient Empowerment Network on Vimeo.

With COVID-19 infection and vaccine concerns, what are the key points for cancer patients and care partners to know? Expert Dr. Shaji Kumar from Mayo Clinic shares valuable information about protective measures against COVID-19 infection, vaccine side effects and effectiveness, working toward herd immunity, and cancer research benefits that have emerged from the pandemic. 

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Transcript:

Mary Leer:

My name is Mary Leer. I’m the Breast Cancer Network Manager.

Jeff Bushnell:

And I’m Jeff Bushnell, the MPN Network Manager at the Patient Empowerment Network. I’m a caregiver.

Dr. Shaji Kumar: I

’m Shaji Kumar, a hematologist at Mayo Clinic.

Mary Leer:

Jeff and I are proud to be part of a strong team of compassionate volunteers, helping health communities adapt to the realities of living with a serious illness, living with cancer during a pandemic certainly presents another layer of challenges. So, Jeff and I will drill down to ask the important questions from the community. For this production, Empowered Patient and Care Partner Ask the Expert, we are very lucky to be joined by noted expert, Dr. Shaji Kumar, a consultant in the division of hematology at Mayo Clinic. Thank you for taking the time to join us, Dr. Kumar.

Dr. Shaji Kumar:

Thank you for having me, Mary.

Mary Leer:

Let’s start with the top of mind questions for so many of us right now, what should every patient and care partner facing a cancer diagnosis know during the pandemic?

Dr. Shaji Kumar:

I think it’s a challenging time for everyone, and it’s obviously more challenging for patients dealing with cancer at the same time, thankfully, we have a vaccine at hand that will certainly make the situation a lot better, but I think from a cancer standpoint, I think what we need to keep in mind all the precautions we talk about in terms  of social distancing, masking, hand washing and all those measures apply equally to everyone, even more so to patients with cancer. And the reason why we say that it’s even more important for several reasons, one, and we continue to learn more about the pandemic and its impact on cancer, one thing that has become clear is that patients with underlying conditions including cancer are to other folks were more affected by the infection, more likely to have more severe interactions and poorer outcomes. Now, patients with cancer appear to be at a higher risk of getting the infection and then they get the infection having a more serious disease. Now, it’s hard to know how much of this is also related to the fact that patients with cancer often have to go into the hospital or the clinic, and hence are more likely to get exposed to the infection than someone who is able to just stay at home.

So that’s one thing. And second, we know that the ongoing treatment for cancer definitely suppresses the immune system, and hence places people at a higher risk of the infection itself. Now, even patients who have their past history of cancer, this appears to be some increased risk, even though this is a little bit, unclear how much more it impacts those individuals. But I think the bottom line is keep the awareness that you might be at a higher risk of getting the infection, more serious infection, and the need to take those precautionary measures in a more strict fashion, and getting the vaccination when you can get it is all things that one needs to keep in mind.

Jeff Bushnell:

Well, that’s wonderful, Dr. Kumar, you mentioned the vaccinations, I am a strong proponent of that, I happen to have been involved in the Moderna vaccine trial, which is and still enrolled, they’re doing the follow-up. I guess they’re checking the last time I was in last week, they took 8 vials of blood, I think they’re checking to see whether I have the antibodies and how long it will last, but I was very happy with the way it was conducted, they were very forthcoming with information.

It was very interesting. And out here in San Diego, where I am, we have done pretty well as a county in vaccinating people and Summer got the vaccine as well with myelofibrosis and she feels a lot better. But for cancer patients who have tested positive for COVID, are there notable consistencies amongst that group of people, and have we learned anything from those patients yet about maybe their chances of getting it more, or their reaction to it? That kind of thing.

Dr. Shaji Kumar:

We know that there’s a wide spectrum of reaction to the vaccine. The majority of the people would not notice any symptoms related to that except for some pain at the injection site.  Not there are some folks, number of people who might have more or just myalgia, muscle pains, just feeling fatigue, some low-grade fevers, just feeling blah for 24-48 hours, and it seems to be not too uncommon. The reactions to the vaccine in terms of the side effects or the symptoms, there doesn’t appear to be much of a difference between cancer patients and normal individuals. Now, in terms of the efficacy of vaccination, you just mentioned Jeff, about you being checked for the antibodies, obviously, that is something that we hope will happen to all individuals who get the vaccine, but we know that is not going to be the case, there’s going to be a wide variation in terms of how strong an immune response one might develop against vaccines. Now We know from, not necessarily the COVID vaccine, but the vaccinations that have been used in the past, whether it be flu vaccines or pneumococcal vaccines, that we all get patients with cancer or patients going through treatment for cancer that can suppress the immune system, tend to have a lower response. But again, that varies quite widely from patient to patient now, there are some vaccines where we can clearly look at the antibody response and say, “Oh, this is not adequate, and we need to maybe give an extra shot.”

We just don’t have that information for COVID vaccines yet. So the way I would look at it is, even though the response to the back in a given person might be less than what we eventually would identify to be optimal, it’s likely to be better than not having to see the vaccine, so I would encourage obviously, everybody to get the vaccine. Now, what about someone who has already had an infection, what would be the response? Should we vaccinate those people? We certainly should. Again, we don’t know the immunity from a natural infection, how long would that last? That is still something that is unknown, and the vaccination dose is likely to make the responses more relevant and more durable, so I would recommend the vaccines for everyone. We don’t think one vaccine is any different from another in terms of your underlying cancer or lack thereof. So in terms of assessing for the antibodies, there is no clear guideline in terms of what one should anticipate from  the vaccine, so there is really no way to say, check the antibody, and they can go ahead and get one more dose or you’re fully vaccinated. So I think the bottom line is, get the vaccine, you don’t need to necessarily test for a response, and then we continue with the usual measures for prevention.

Jeff Bushnell:

And so what would you tell the… I guess that’s pretty much the answer to the next question I had. What would you tell the patients who are in active treatment and who planned to get the vaccine just continue as normal after they get it, with all the appropriate precautions?

Dr. Shaji Kumar:

Yeah, no, I think there’s one other important aspect, Jeff, to that question you just raised, which is, what is the right timing to get vaccinated, the vaccine, and that is a question that often comes up. So patients who are not getting active treatment, there is obviously no concern whenever the name comes up, go ahead and get the vaccine. And the second is what if someone is actually getting active treatment for their cancer, is there any role in terms of trying to find the vaccination, with respect to the doses of the medications and for most of the treatment we are using for cancer, there are no clear guidelines in terms of the when they can get the vaccine, that having several guidelines that have been put out by different organizations. The bottom line is, if there is an ability to space out or give sometime between the vaccine and the dose of the medication, do that, don’t modify your treatments, just so that you can get the cross at a particular time. The only place where we would recommend specific guidelines within the context of somebody who may have had a bone marrow transplant or had some other kind of cellular therapies, in those contexts, we often recommend that you wait for a couple of months after the stem cell transplant, before we get the vaccines. But for all the other treatments that we are getting right now, we want to just within the schedule of the treatment that’s already on going, try and get the vaccine in between two doses.

Mary Leer:

For those who have been vaccinated and are living with cancer, you spoke to that in great depth, but I’m also wondering about people that are perhaps in post-treatment and let’s look at social distancing measures or other restrictions, are those different for patients versus the general population?

Dr. Shaji Kumar:

No, I think the proportions are the same, I think the social distancing and the masking should continue to be observed the same way, and I think the only other word of caution I think may be particularly relevant for the cancer patients would be, again, trying to avoid again those kind of being outdoors and larger groups of people, even if when you maintain the social distancing, try and not do that. The outdoors are probably a little better than smaller indoor gatherings, and it’s mostly the common sense proportions, and I think the cancer patients are probably more tuned to this because they have been following some of those things even before the COVID came on and post-vaccination, I would recommend that these steps don’t change at all, partly because we gain for a given person, we don’t know how robust the immune response that those patients have after the vaccination and the lack of good testing to say that, okay, now you’re fully vaccinated, your response is great, you don’t need to worry about getting infected.

Mary Leer:

Wow, thank you so much. That’s so helpful. I’m going to shift to vaccine hesitancy. This is an important topic for many. Drug development takes years, sometimes decades. Can you speak to those who might be hesitant about the speed of vaccine development around COVID. I’ve heard this often from other people saying, “Well, they develop this so quickly, how can we trust it?”

Dr. Shaji Kumar:

Yeah, no, I think those concerns are quite valid, I think vaccines have always been a very controversial topic and not just COVID vaccination but even for childhood vaccinations. There have been long-standing concerns that some of those vaccinations may be responsible for some of the issues that we see in the children and even in the late adulthood. I think what we really want to get across is, again, taking that question apart, and there are multiple different aspects to it, one is the whole concept of how we created the vaccine so quickly, we kept telling everyone from the time that it started that it takes five to 10 years to develop a good vaccine, and now we have something in a year, so obviously that raises concerns amongst people. I think it’s just a testament to how far technology has come. In the past, we had to isolate the protein and use that protein to develop the immune response, and what has been really unique about the COVID situation has been the Pfizer vaccine and the Moderna vaccine, both of which uses a new technology called the mRNA-based technology. And this is something that has been developed over the past decade to decade-and-a-half, and I would say this is a platform that was perfect, just waiting for the right opportunity to come along.

And the COVID situation really presented that. And even though it was the speed with which this was developed, is just because the technology has come along so much and we can actually do that, and the second is how fast the clinical trials have been done, and I think that speaks to, again, the infrastructure that they have been developed over the years to rapidly develop and implement a clinical trial. So the clinical trials, both Pfizer and Moderna trials had 40 to 50,000 people enrolled in a quick phase and the community transmission that was happening at a very high rate. We could get these trials done in a very rapid manner, so the patients or the people who enrolled in this clinical trial the fact that they were not getting infected could be determined in a much, much faster fashion than what you would have done in the past with any of the other vaccines. So I think the technology is robust. The [COVID]  trials are very well-conducted and the end point in terms of efficacy has been very well-determined or very accurately determined.  And given the size of these trials and the number of people who have been a goal, I think we can feel fairly confident that the risk associated with this vaccine is pretty low, so you can argue that one of the risk of a particular side effect is only 1 in 80,000. So maybe to the 40,000 people enroll in the trial, they may not have adequate numbers of that and that was certainly a concern when they started vaccinating. And we just know a couple of days ago, there was a publication that looked at almost like 63 million vaccination doses that have been given, and overall the risk of vaccine related side effects have been very, very minimal.

So I think that should also boost our confidence.

But on the other hand, we all heard about what would happen with some of those vaccines and the blood clots, and I think that even though…yes, it is, as it is a risk. It is a very, very small risk. And the fact that you were able to identify them right away again, I think tells us that should there be rare side effects, you’re going to find it, and we are going to figure out the mechanics of why those side effects happen. And we’re going to figure out how to avoid those things.

So, I think the information flow is so fast and all the data related to vaccines and the side effects are being captured in a real-time fashion that we would be… You’d immediately be of avail of side effects should that happen.

Mary Leer:

Wow, that’s so reassuring. Thank you.

Jeff Bushnell:

Another question kind of along the same lines, doctor is the last few days, especially, it’s Vaccine hesitancy has really become sort of the issue to the potential of achieving herd immunity, and how can everybody in the medical community, you guys are facing those stuff in a different way, but the average person, how can we help overcome hesitancy and increase the people’s trust in the vaccine, and also increase the equitable distribution amongst all populations? Some populations are hesitant to take it, others have distance problems for being able to get it. What can we do to sort of push ourselves over the hill to get to that herd immunity?

Dr. Shaji Kumar:

Yeah, no, You bring up a very important point, and I hope we are in a much better place than many parts of the world right now because we have one of the few countries where a significant proportion of the people have been vaccinated, but we are not quite at the point where we can claim herd immunity, I think we still need to continue to pursue this, and I think the ideal goal is to get everyone who’s eligible to get a vaccine vaccinated. Now, you bring up some of the very important points, because even though vaccine hesitancy is a real problem, the underlying reason behind this is manifold, and the only way to tackle that is we have a multi-front approach that will take into account what is the reason behind it.

So for the people where it’s hard to get to populations which can live in far from the areas, it may be more the ability to use those vaccines, which does need the complicated storage, for example, the J&J vaccine. You only need one dose. It’s easy to store. So that may be one of the approaches to be taken. And people who believe that this is a vaccine is going to create side effects, or it’s part of some grand scheme to introduce a variety of things. I think it’s a person of education, and I think they really need to tell them what can happen with. Not really just to them, but the fact that if you continue to allow these infections to proceed on stuff, there are going to be increasing numbers of mutations, and that in turn is going to make the pandemic much more difficult to control in the long run. So it’s totally an individual benefit, but it’s on to the society’s benefit to have everyone be vaccinated. And then definitely, I think knowing that should anything unto it happen, there’s going to be medical care that’s going to be available to these individuals, and I think that’s also an important point, so who are near and dear to them is going to be the key thing.

Mary Leer:

Here’s a question many cancer patients are unclear about if antibodies are present or if I have tested positive before, there’s a wondering, “Should I still get the vaccine?”

Dr. Shaji Kumar:

Yeah, I know the recommendation right now is to go ahead and get the vaccine, partly because we don’t know the natural immunity from the infection, how long does it last. So it seems like the antibodies can start to wane off the infection. And again, we don’t have a lot of data on it, but it looks 3 to 6 months, it might start waning at least to the level that they can detect. Now, whether that is sufficient or even the undetectable levels is protective against a future infection, we don’t know. There have been some reports of people getting a second infection even though they have been infected before again, scattered reports, we don’t know how widespread that phenomenon is going to be, so given all these, I think the current recommendation would be to go ahead and get vaccinated. We generally tell people to wait for two to three months after the infection to go ahead with the vaccination.

Mary Leer:

Alright, thank you

Jeff Bushnell:

Should people… Is the idea of pre-screening, especially for cancer patients, maybe who may be at risk, I guess, to see whether they have antibodies or whatever, be an effective thing to decide which vaccine they should get? or I know, as I say, I was in the trial and they were very forthcoming to the participants with what the numbers were, and I was flabbergasted at how effective the vaccine was, it was just amazing to me, and that kind of information that I guess is not available publicly maybe it should be. Does it help to decide which vaccine you get? All I hear on the TV is get the first one you can. What are your thoughts on that?

Dr. Shaji Kumar:

Yeah, no, I completely agree with you. I think even those numbers may mean… You look at the Moderna and the Pfizer trials, and they said, now over 90 percent effective. Look at the AstraZeneca trials, you know, it’s like they recorded 70 to 80, 85 percent, and the J&J about 80 to 90 percent effective. Do these numbers mean much? It’s really hard to know, I think, partly because they have been tested in, again, different countries, different times, as the virus was continually changing its characteristics. So it does it mean… So one could argue that maybe the vaccines that were tested later on when this will be some of the mutants were already there might be more effective, but we don’t know.

I think at the end of the day, 80 versus 90 is not something we would decide a vaccine on. The fact that, yes, if something was only 10 percent effective versus 90 percent, it’s a probably different story. So based on the numbers we have seen, I would say whatever you can get to first, if you don’t want to get jabbed twice, maybe you go with something that goes, it’s only one dose, but that may be the only distinguishing factor here, but nevertheless, I think we have to just get the vaccination, the first vaccine that we can get our hands on.

Mary Leer:

So let’s hope there is some good that comes from the bad. Are there any noticeable trends born out of the pandemic that will be or could be a benefit to the future of cancer care or research?

Dr. Shaji Kumar:

Mary, That’s a very important question, and I think we always learn from adversity, and I think this is going to be no different. I think, especially when the pandemic hit back in the spring of last year, we all had to think fast on our feet to figure out how best to continue to tell about the best care for the cancer patients without compromising the care in any way. And we knew that bringing the patients back into the clinic at the same rate we did before the pandemic would expose them to significant risk for infection, so how do we continue with treatment? There have been very different things people have tried…one of them is to try and get the medications to patients at home. If they are on IV medications, they can be changed to something that’s comparable that can be given by mouth. We already did that for some patients. For some patients who used to come to the clinic very often, so we figure out is there a way for them to get some of those testing done in a clinic much closer to home, so they can avoid the travel, they can avoid being in a bigger city, they can avoid being in a bigger institution, again, reducing the risk of exposure, and then you look at those numbers and then decide on the next course of treatment. We converted many of the clinic visits to video visits. Nothing is as good as having the patient right in front of you, but this is the best we could do under the circumstances.

And I think that helped. So I think the clinical trials was a big problem because in many of those trials were done in a very rigid fashion with very little variability allowed within the protocols. And everybody loosened from the clinical trial sponsors, the pharmaceutical companies, the institutional review board, the investigators to try and build flexibility into those clinical trial structures to allow patients to continue to be on those trials, many of which are important and both helping. So what does that mean for the future? I think the video visits are here to stay, I think we will continue to utilize that and bring patients back to the clinic only when it’s absolutely needed. I think the clinical trials will have in-built flexibility so that patients can enroll on clinical trials remotely, they can potentially be given some of those medications at home, maybe it would be something where we would check into the patients on a regular basis to make sure things are proceeding in the right way. I think there are increasingly technologies that will allow the patients to communicate in real time with the care team and also provide many of the data that we need through iPads or iPhones, Apple watches, whatever we end up using.

So that is that I think that technology will rapidly take off in the next few years, I think. So I think a lot of the care of the patients with cancer in general, and particularly cancer patients, I think is going to look very different five years from now, because of all these things that we have always thought of and we thought, “Yeah it will take time to implement, it’s difficult.” Now we figure it out in a year. We can do a lot of those things.

Mary Leer:

Yeah, thank you.

Jeff Bushnell:

For the final question, you’ve given tremendous information here, Dr. Kumar w What’s the final takeaway for the average cancer patient and caregiver, how to get through this? What’s your bottom line for us all?

Dr. Shaji Kumar:

Bottomline is, I think Your cancer treatment comes first, let’s not compromise on it, let us do it as safe as we can by observing all the instructions in terms of social distancing, masking, avoiding gatherings, getting vaccinated, and make sure you keep connected with your care team. You don’t have to be in the clinic to do that. There’s a variety of different tools, I think every hospital has options to either through their medical records to message their care team, or set up video visits and so forth.

So we want to be in a state where it was before the pandemic in terms of your communications, but use the technology, so we can decrease the risk of exposure without compromising the quality of care.

Mary Leer:

Alright, well, thank you so much, Dr. Kumar, that you have just given us such valuable information, and I want to thank Jeff as well, and the Patient Empowerment Network for putting this together.

Jeff Bushnell:

Thank you, Dr. Kumar, appreciate it.

Dr. Kumar:

Thank you, Jeff.

Claiming the Number One Spot

Assimilation can sometimes take years to complete. Or, it can be a slow imperceptible change. It can happen and you may not be aware until after some time has passed. For others, assimilation can be a brutal quick mind-numbing takeover. What am I speaking of? It’s the mental and emotional takeover of being seen as a person with a name to a patient with a date of birth, social security number, and insurance card.

From the initial time you get your cancer diagnosis, you’re thrust into a complex healthcare system and suddenly you find yourself trying to maintain and keep your identity as a mother, father, sister, brother, son, or daughter, husband or wife. Soon, you’re running from doctor appointment to doctor appointment. Your sense of choice and control over your time and understanding your body is now unrecognizable to yourself. Eventually, you’re a patient. It’s scary how quickly your mindset changes and you find yourself feeling more like a victim. Understandable when you’re over your head all consumed in perhaps the battle for your life. Instead of assimilating, perhaps transitioning is a better term. It is difficult, but necessary, however, not to the degree you may think. Just because you are now ill, it doesn’t mean you have to just sit back and let the doctor make all the decisions and you just follow. You have to be an active participant in your care, every day, all the time! Traditionally we have always felt that doctors know everything and they will always do what’s in our best interest, all of the time. Not so! I had to remember when my husband was in treatment for myeloma, no two patients are the same, and no one doctor knows everything. There’s a reason it’s called “the practice of medicine.” It’s time to look at yourself not as a patient but as a person with a disease. You can still have control over your life and steer the ship.

This is a short fact sheet on self-empowerment. Refer to it over and over to remind yourself how to manage your treatment plan with your healthcare team. And, use it to expand your treatment team.

First:

Anytime you are in your doctor’s office, you are the most important person in the room. It’s all about you. Make sure the focus is on you and that you are giving your treatment team everything about your health, even minor changes as they may be important. Ask about the treatment, how it has affected other people and how it can affect you. What are all of your options? And, also equally important, what is this going to cost?

Second:

Ask over and over until you understand. Whether it’s about your health or the cost of your treatment plan, you need to be in the driver’s seat. You need to be able to plan not just for next week but for the rest of your life. Don’t be afraid to ask and get answers. Be respectful of your doctor’s time. Perhaps call in and make your doctor aware of your need for a few extra minutes to go over your questions or concerns or ask if you can send these questions ahead of your appointment so they can be prepared. Be aware that the financial questions may be sent to a social worker or someone else. On your request ask that they identify that person. That way you know who to go to for that information in the future. Or, request a few  additional minutes to your appointment to have your concerns addressed. The point is, make sure you ask about all the concerns you may have regarding your treatment and its costs.

If you have problems asking questions there are people who can help you who can advocate on your behalf when you can’t. In addition to discovering or acquiring the skills you need to become an effective self-advocate, you need to be empowered to believe that your voice can and should be heard. Unfortunately, many older people, my mother was one of those, who are less educated or come from lower socioeconomic groups—those who are timid or shy by nature—may find it difficult to question someone they perceive as authority figures who control their destiny. They may fear asking “dumb” questions, or may not even know the questions to ask, or alienating their doctors by questioning them. And, trust is critical to any good doctor-patient relationship. Patients want to believe in their doctors. If you find yourself not getting the attention you need or answers to your questions, or you’re getting push back from the doctor, it may be time to look for another doctor. It won’t be easy, but not doing so can have a huge negative impact on the quality of your care. This is advocating for yourself and it’s so empowering!

Third:

The more you know about your cancer, the more you can participate in your treatment. There are many ways to research your illness. There are cancer-specific non-profits that offer a wealth of information and cancer-specific support programs.  You may have access to a medical library or don’t forget the wealth of information you can get from creditable websites online.

One of the most difficult areas of advocating for yourself may be regarding understanding the cost of your care and sharing with the doctor before it’s too late how you don’t know how or if you can afford the care that is necessary. Financial toxicity adds so much stress which interferes with your health outcomes. And, unfortunately, the COVID-19 pandemic has only made things worse. The sooner you bring this subject up with your healthcare team the better off you are going to be. Our society, unfortunately, judges people on how big their house is, what kind of car they drive, and whose name is on clothing labels. Look around, you can have all the money in the world, but cancer/illness is one of the great equalizers. Your goal is to get the best care you can. There are many resources available to help you do that. From healthcare to financial assistance to empowerment guidance. Just ask!

Communicating About Cancer: A Brief Guide to Telling People Who Care

Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

Reaching the Peak: Finding Resilience During Cancer

What does it mean to be “resilient” as a cancer survivor? Does it mean having the courage to remain positive? The strength to carry yourself into the next chapter of this “new normal” life?

In my opinion, having resilience or being resilient means all those things and more. However, resilience can also be built upon a collaborative effort made by both the patient and their healthcare team.

In the recent 2020 symposium held by the National Coalition for Cancer Survivorship, results were presented from a survey that stated patients believe that being proactive in the beginning of treatment can lead to better health outcomes. Part of being proactive on the patient side is asking questions of your care about diagnosis and prognosis, treatment options, physical/mental/emotional side effects, and short-term and long-term effects on quality of life. During the treatment process being proactive can also consist of contacting your care team with questions rather than guessing what “should be” happening, instructions on how to take medications, and any unexplained side effects.

Managing these side effects can also count as resilience. For example, speaking with a social worker or seeing a therapist may help with the emotional trauma of a diagnosis. Moving your body and getting your blood flowing by walking, running, yoga, and other forms of exercise can show mental and physical resilience. Most importantly, asking for help when you need it and being specific in what you need can show determination.

At the end of treatment, the journey is not over. Rather, it can feel like it’s just beginning. As you look back on how far you’ve come, contemplate if there’s anything you would’ve done differently. Maybe you were fearful, and now you’re more curious. Maybe you were afraid to share your story and what people would think of you. Now you know that none of that matters, except what you think, what you feel. Your story is powerful, your feelings are valid, and you have the courage to push forward.

Resilience isn’t something to be won; it’s something to be explored. Just like a diagnosis, it doesn’t come easy. But take a moment, breathe, and know that there are people rooting for you. Keep going.