November 2024 - Gilda's Club Kentuckiana

To Talk (or Not To Talk) About Your Cancer During the Holidays

November 26, 2024/in Survivorship/by Gilda's Club Kentuckiana

A friendly gathering of mature adults greets one another with hugs and conversation

Nervous about receiving comments & questions related to your cancer at holiday gatherings? These tips can help you navigate conversations about your diagnosis and treatment.

Family gatherings, community activities, faith-based traditions, office parties, children’s school concerts — end-of-year celebrations and holiday events are upon us. If you’re facing a cancer diagnosis, these gatherings and festivities may look and feel different this year: you’re bringing cancer to the party.

Whether you’re feeling emotionally unprepared or physically exhausted, the anticipation of socializing with family, friends, and strangers at these events may be causing you extra stress. If you’re feeling anxious about addressing questions and comments about your diagnosis, know that your feelings are normal. It’s equally okay to not feel celebratory this year.

Perhaps you’ve just been diagnosed and are still processing the news. Perhaps you’re in treatment and experiencing side effects that have changed your appearance. Or maybe your care team has suggested dietary changes or contact precautions that will change the way you typically eat and interact with loved ones during get-togethers.

People may ask questions, make offhand comments, or offer unsolicited advice. Even with good intentions, these statements can create an uncomfortable environment for guests, and for you especially. Being proactive in determining how you will respond to remarks about your health can lessen or resolve feelings of discomfort.

Remember: Your experience is your own. Determining what is shared, and with whom, is a privilege reserved just for you.

Remarks about your diagnosis:

I’ve heard you’ve been going through some health stuff recently. Have you gotten a diagnosis?

Possible response: I appreciate your concern. I’m not ready to share that information.

Hey, you never told me what the results were from the genetic testing. Is it hereditary?

Possible response: I’m waiting to speak with my doctor about those results. Once I do, I’ll follow her advice in sharing the findings with those who may be impacted.

Your aunt shared with me last week that you’ve been diagnosed with breast cancer. What have the doctors told you? Did you catch it early?

Possible response: I’m still processing all of this myself. For now, I’m choosing to keep the details private.

Remarks about your treatment plan:

How’s the chemo going? I’ve heard that it makes you sick and tired all the time, and that you lose your hair and the ability to think straight.

Possible response: I’m taking each day as it comes. I’m feeling okay today and just want to enjoy the day with everyone.

Do you have a date yet for the surgery?

Possible response: I know you’re asking from a place of good intent, but I’m keeping the date of my surgery between my partner and me. I’ll make sure to let you know if there’s anything I need once I’m in the recovery period.

I was doing some research and found that there’s a new treatment in curing cancer. You should see if you’re a candidate. I’ll send you the articles I read.

Possible response: Thank you for wanting the best for me. I’ve got a great care team and I feel good about the plan we have in place. I’ll let you know if I’d like to look at those articles in the future. For now, I feel hopeful about my treatment plan.

Remarks about changes to your appearance:

You look great. How much weight have you lost?

Possible response: I know you meant that as a compliment, but I’d rather not talk about changes in how I’m looking today.

Is that a wig? It looks so natural.

Possible response: I’m feeling a little self-conscious showing up to this party looking different than I normally do. I’d appreciate if we can talk about something unrelated to my appearance or health.

Why are you so covered up? Show those battle scares off with pride!

Possible response: Thank you for recognizing that I’ve survived something really difficult. I feel comfortable in this outfit, and it’s important that I also feel comfortable if and when I decide to reveal my scars to others.

Remarks about changes to your eating or behavior:

So now that you have that bag, can you still eat normally?

Possible response: I know you’re just curious but that question really isn’t appropriate.

Just have a few bites of Jane’s casserole. You don’t want to insult her.

Possible response: I have no intention of offending anyone at this gathering, but I’m choosing to prioritize my health and follow the dietary guidance of my care team.

Why the mask? It’s just going to be family here and everyone knows to stay home if they’re feeling sick.

Possible response: I want to cherish this time with family. I spoke with my care team about how to protect myself from illness and infection when I’m around others. Wearing a mask is the best option for me to safely join in celebration.

Having a few blanket statements in your back pocket may help you feel more at ease when talking — or not talking — about your cancer experience during holiday celebrations and other end-of-year gatherings. Here are a few more tips you may want to try:

Have a close family member or friend by your side at events to help mediate questions or comments that can feel invasive, judgmental, or otherwise inappropriate.
If you are attending a gathering as a guest, speak with the host beforehand to discuss your concerns.
Contact our Cancer Support Helpline at 888-793-9355 to talk with an expert. Our Helpline’s community navigators and resource specialists can provide personalized guidance, resources, and support to help you navigate your cancer experience during the holiday season and year-round.

Remember: Your truth is valid. Your experience is real. And your well-being deserves to be respected, always.

About the Author

Carolyn Noack is a licensed clinical social worker in California with specialties in oncology, perinatal loss, and grief. She has provided psychotherapy, psychoeducation, support group facilitation, and patient navigation support to those impacted by cancer for most of her career, working in inpatient, outpatient, and private practice settings. Carolyn has worked as a community navigator on CSC’s Cancer Support Helpline since 2021. She is passionate and committed to providing care that is patient-centered, compassionate, and evidence-based.

10 Tips for Caregivers

November 25, 2024/in Caregivers/by Gilda's Club Kentuckiana

Sarah Vammen

Showing support with a hug in group therapy

Stock photo posed by models, sourced from Getty Images

Finding out a loved one has cancer can be overwhelming. First, take a deep breath. Know that the support you provide is priceless. Read on for ways to find your balance as you navigate this “new normal.”

People talk about a caregiver, but you don’t really know what a caregiver is until you’re really in that role…I learned that a caregiver wears many hats: listener, observer, protector, planner, anticipator, the backup brain to the patient, the organizer, the strong one, the levelheaded one…I quickly realized that I could not do it all and that I needed help.

Sheri

Former cancer caregiver for a close friend

Cancer affects not only the person diagnosed but also the people who care about that person. Caregivers to someone with cancer spend an average of 8 hours per day providing care to their loved one. The demands of caregiving depend on several different things — the stage of disease, the type of treatment, symptoms and side effects experienced, and more.

A caregiver’s response to the cancer diagnosis, treatment, and journey itself can be just as important as how the patient responds. This makes the need for physical, social, and emotional support for caregivers essential.

Note: While we use the term caregiver in this blog, we recognize that not everyone identifies with this term. That’s okay. There’s no one right word. Many people prefer the term care partner, support partner, or carer. We encourage you to describe your experience in ways that feel right to you.

If you’re stepping into the caregiver role for the first time, you may have questions such as:

What should I do now? Where do I start?
How can I help?
Can I manage this new role with my other responsibilities?
Will I be able to find time for self-care?

Here are 10 tips to help you find balance, support, and connection:

1. Find your support system.

When a friend or loved one is diagnosed with cancer, it’s an emotional time. Sometimes it can be difficult to talk with your loved one about your feelings, because you both have so much going on. Many people find that talking to others with similar experiences is one of the best ways to cope with stress, uncertainty, and loneliness.

Discussion forums are one place to find connection. Join our online discussion forum for cancer caregivers to connect with others like you. Share your unique experiences and offer insights, coping strategies, and inspiration. Joining a support group for cancer caregivers is another great way to find connection with people who understand what you’re experiencing.

Did you know?

We have 196 support locations worldwide that offer professionally led programs like support groups, yoga classes, and educational workshops, all free of charge for cancer patients, survivors, caregivers, and family members. Find a caring and supportive location near you.

2. Gather information.

There is truth to the phrase “Knowledge is power.”

There’s no way to completely grasp the ups and downs of a cancer diagnosis and treatment — and you shouldn’t be expected to. Being armed with knowledge may help you accommodate your loved one’s needs and help you know what to expect.

If you need help gathering resources and information, reach out to our Cancer Support Helpline. Our Helpline staff provides free, personalized navigation for cancer patients or their loved ones. Contact our Helpline toll-free at 888-793-9355 or online via our live chat service.

Watch this 90-minute video as experts share tips to manage the practical challenges of cancer caregiving and enhance communication with your loved one.

3. Recognize a “new normal.”

Patients and caregivers alike report feeling a loss of control after a cancer diagnosis. Many caregivers are asked for advice about medical decisions or managing family finances. Some caregivers also need to take on new day-to-day chores. It’s likely that your tasks as a caregiver will create new routines — after all, you’re taking on a new role in your loved one’s life as well as your own.

Maintaining a balance between your loved one’s disease and the daily activities of your own life can be a challenge. It may be helpful to identify the parts of your life that you can still control, such as your own health and relationships. In doing this, you will be able to create a strategy for integrating new routines with old ones.

It may also help to acknowledge that your home life, finances, and friendships may change for a period of time. Sometimes the laundry might not get done, or maybe takeout will replace home cooking. Try to manage each day’s priority as it comes.

4. Relax your mind, recharge your body.

It can be easy to feel overwhelmed by the tasks of caregiving. Mini-breaks are an easy way to replenish your energy and lower your stress. Try simple activities like taking a walk around the block or closing your eyes for 10 minutes in a comfortable chair.

You are working hard to provide and secure the best care for your loved one. Time spent recharging your mind and body will allow you to avoid depression, major illness, or burnout.

Tip: Seek ways to rejuvenate your spirit. Taking time for yourself is not selfish. It’s necessary.

5. Take comfort in others.

It’s common for many caregivers to feel a loss of personal time over the course of their loved one’s illness. Keep in mind that while you are taking on new and additional responsibilities, you are still allowed a life of your own. Many seasoned caregivers advise that you continue to be involved with your circle of friends and family.

6. Plan for the future.

A common feeling among caregivers and people with cancer is uncertainty. It’s hard to know what the future holds. While planning may be difficult, it can help. Try to schedule fun activities on days when your loved one is not feeling the side effects of treatment. You can also give yourselves something to look forward to by planning together how you will celebrate the end of treatment, or a portion of treatment.

Planning for a future in the long-term is also important. All of us, whether we have been diagnosed with cancer or not, should have in place necessary paperwork such as healthcare agent, power of attorney, and a will. You can ask your loved one if he or she needs, or wants, assistance. Having essential paperwork under control will allow you to have peace of mind.

7. Accept a helping hand.

It’s okay to have helpers. In fact, you may find that learning to let go and say “Yes!” will ease your anxiety and lift your spirits. People often want to chip in, but aren’t quite sure what type of assistance you need. It’s helpful to keep a list of all caregiving tasks, both small and large. That way, when someone asks “Is there anything I can do?” you are able to offer them specific choices.

One simple way to organize helpers is to create a personal network site to join your family members and friends together. Visit our free digital support community to get started. Keep your network updated about your loved one’s treatment and recovery, and request volunteer help for a variety of events, from rides to doctor’s appointments to childcare, pet care, and more.

Tip: Make a list of all of the names, phone numbers, and email addresses of everyone on the cancer care team and put it in a place where it’s readily available, should you need it. Make copies for anyone who is supporting you in your caregiver role.

8. Be mindful of your health.

In order to be strong for your loved one, you need to take care of yourself. It’s easy to lose sight of your own health and well-being when you’re focused on your loved one. But if your own health is in jeopardy, who will take care of your loved one? Be sure to tend to any physical ailments of your own that arise. This includes scheduling regular checkups and cancer screenings.

And just like your mother told you, make sure you’re getting enough sleep and eating well. Visit our virtual kitchen to explore recipes and healthy cooking videos. These recipes were created to support the nutritional needs of people impacted by cancer, but anyone can enjoy their health benefits.

10 tips for caregivers — Get the recipe for these nutritionally balanced fish tacos, perfect for lunch or dinner, are high in protein, fiber, and antioxidants.

9. Consider exploring stress-management techniques.

Even if you’ve never practiced mind-body exercises before, you may find that meditation, yoga, listening to music, or simply breathing deeply will relieve your stress. If this interests you, seek out guidance or instruction to help you become your own expert on entering into a peaceful, rejuvenated state.

Mind-body (or stress-reduction) interventions use a variety of techniques to help you relax mentally and physically. Examples include meditation, guided imagery, and healing therapies that tap your creative outlets such as art, music, or dance.

For help with relaxing and unwinding, visit our virtual Mind Body Studio for yoga lessons, gentle exercises, and meditation videos.

10. Do what you can, admit what you can’t.

No one can do everything. It’s okay to acknowledge your limits. Come to terms with feeling overwhelmed (it will happen) and resolve to be firm when deciding what you can and cannot handle on your own, because no one should have to face cancer alone.

Lung Cancer Diagnosis? Ask These 25 Questions About Treatment Options

November 14, 2024/in Lung Cancer, Treatment Questions/by Gilda's Club of Kentuckiana

A woman doctor in a white lab coat speaks with a man sitting at a desk in a doctor's office

Stock photo posed by models, sourced from Getty Images

New treatments, biomarker testing, and clinical trials offer hope for people living with lung cancer. Read on for 25 questions to discuss with your healthcare provider as you consider your options and what’s important to you.

I ask a lot of questions because I feel I need to learn about what’s going on inside me.
Tammy, Diagnosed with non-small cell lung cancer

If you are newly diagnosed with lung cancer, you probably have dozens of questions going through your mind right now. One of the biggest might be: “Can my lung cancer be treated?” Or “What is the best treatment for the type of lung cancer I have?”

It’s natural to feel overwhelmed as you review treatment options with your healthcare team. There are more ways to treat lung cancer now than ever before.

Standard treatment often uses a combination of approaches, such as radiation therapy and chemotherapy. There are also promising new treatments available. New drug therapies, including immunotherapies and targeted therapies, are approved regularly.

One way to take control of your experience is by asking questions about your lung cancer diagnosis and treatment options. The more you know, the easier it will be to talk with your healthcare team to determine the best treatment plan for you.

Not sure what questions to ask? Here are some helpful ideas:

1. What type of lung cancer do I have?

Tip: The type of lung cancer will determine the types of treatment you will receive. There are two main types of lung cancer: non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC). There are 3 major types of NSCLC: adenocarcinoma, squamous cell carcinoma, and large cell carcinoma.

2. What is the stage of my lung cancer?

Tip: The stage of your cancer will also help determine the types of treatment you will receive.

Non-small cell lung cancer can be anywhere from stage 0 (very early stage) to stage 4 (cancer has spread beyond one lung and to another part of the body).
Small cell lung cancer is staged differently. Doctors classify it as limited-stage or extensive-stage disease.

3. If my cancer has metastasized (spread), where are the metastases located?

Tip: Cancer occurs when cells in your body start growing and dividing faster than they are supposed to. At first, these cells may form into small clumps or tumors. But they can also spread (or metastasize) to other parts of the body. You still have the same type of cancer you started with. For example, if your lung cancer spreads to the bone, you still only have lung cancer. You do not have bone cancer.

4. Has a sample of my tumor been sent for comprehensive biomarker testing?

Tip: Some cancer drugs are only effective for certain cancer subtypes. Biomarker testing (also called tumor testing) provides specific information about the type of lung cancer you have. So, biomarker testing may help determine the best treatment for you. It may also help determine if you are eligible to join certain clinical trials.

Take our 2-minute survey to find out what biomarker test you should get for your type of lung cancer and what the results mean for your treatment.

This 2-minute video helps explain what you need to know about biomarker testing and how it can impact cancer treatment.

5. How do my age and current health affect my treatment options?

6. What is the goal of my treatment? A cure? To stop or slow the cancer’s growth?

Tip: Be sure to share your own expectations for treatment and the quality of life you hope to have during and after treatment.

7. Which treatments do you recommend, and why?

8. What are the benefits of these treatments?

9. What are the risks of the recommended treatments?

10. What side effects might I expect?

Tip: In your discussion, ask how you can prepare for any expected side effects. By preparing for common side effects before starting treatment, you can improve your quality of life and stay on course throughout your treatment schedule.

Watch our discussion with Dr. Sandra Cuellar about gastrointestinal (GI) side effects that may occur with non-small cell lung cancer treatment. GI side effects can include nausea, vomiting, diarrhea, or constipation.

11. How will treatment affect my quality of life?

Tip: Discuss what your treatment will involve in terms of time and travel. Will you need to visit a clinic to receive treatments? Will there be restricted activity or the need for hospitalization?

12. How likely is it that this treatment will work for me?

13. Are there other treatments besides the ones you recommended?

14. Will I be given any combination treatments?

15. How and when will you determine if the treatment is working?

16. How much will this treatment cost me?

Tip: In your discussion, you can also ask if there is a treatment that is just as effective but that costs less. You also may want to ask your healthcare provider if there is a financial counselor with whom you can meet.

Have a concern about cancer care costs, or something else about your cancer care?

Our Cancer Support Helpline offers free navigation (including financial navigation) for patients and their loved ones by phone at 888-793-9355 or online via our live chat service.

17. Is surgery an option?

Tip: In your discussion, ask if the tumor can be removed through surgery.

18. Will I have chemotherapy before or after surgery?

19. What is the name of the chemotherapy I might receive?

20. Will I have radiation before or after surgery?

21. What kind of radiation?

22. Will I have immunotherapy? What kind?

Tip: Immunotherapies are a type of cancer treatment that use the body’s natural defenses to identify, attack, and kill cancer cells. Some may be given in combination with other therapies or with a different immunotherapy.

23. Am I a candidate for targeted therapy? What kind?

Tip: Targeted therapy drugs are a newer kind of cancer treatment. They “target” specific cancer subtypes. They are better able to attack cancer cells and leave healthy cells alone. Targeted therapies may be given alone or in combination with other treatments.

Watch this 2-minute video to learn how targeted therapy drugs work and if it targeted therapy might be an option for you.

24. Am I eligible for any clinical trials?

Tip: Cancer clinical trials are studies to test new cancer treatments or learn how to use current treatments better. They may be the only way to try a promising new treatment. Some clinical trials are looking at new ways to treat lung cancer, including new kinds of immunotherapy like vaccines and cell therapies.

Get Answers to Common Questions About Clinical Trials

25. Are there other resources that can help me during this time?

Tip: Your healthcare provider can recommend resources specific to your needs and treatment plan. This may include certain people on your healthcare team who can provide extra support, such as an oncology social worker.

In addition to these 25 questions, you may have questions of your own. Create a list of all the questions you want to ask your healthcare provider and take it with you to your appointment. Consider bringing a trusted friend or loved one with you to take notes and help ask questions.

Just hang in there. We are not alone. If you start talking about it, people will respond mostly with kindness and love.
Tammy, Diagnosed with non-small cell lung cancer