New Patient Guide

New Patient Guide

You are not alone

If you've just been diagnosed with appendix cancer, you may be feeling overwhelmed, confused, or scared. That's completely normal. This guide is here to help you take the first steps, understand your diagnosis, and connect with the support you need.

— Lindsey Wolfram, Patient & Co-Founder, Appendix Cancer Canada

Diagnosing and treating appendix cancer takes special knowledge and experience, so it's important to find a doctor who knows how to provide the right care.

Facing appendix cancer can feel isolating, but connection is a powerful source of strength. Whether it's talking to someone who's been through it, joining a support group, or simply sharing your story — connecting with others reminds us that we're not alone. Here are some options to help you find the best fit for you:

Appendix Cancer Specific Support Groups:

Appendix Cancer Facebook Support:

Canadian Cancer Support:

Podcasts for Appendix Cancer:

Mental health is just as important as physical health, and nurturing it through community, conversation, and compassion can make all the difference. At Appendix Cancer Canada, we believe healing happens together.

Other Useful Links:

  • Wellspring — At Wellspring, you will find a range of specialized programs designed to provide connection and belonging; ease pain, fatigue and distress; build strength and mobility; and support financial and workplace challenges. Wellspring programs are available across Canada online, and through locations in Ontario and Alberta, all at no charge, and without referral.
  • Psychology Today - Find detailed listings for mental health professionals in Canada.
  • First Session - First Session is a Canadian platform that helps people find the right therapist through authentic video interviews, personalized search tools, and educational content—prioritizing meaningful human connection over convenience.
  • Canadian Cancer Society - We offer a support system for people with cancer and their family, friends and caregivers. Our programs and services help answer your questions about cancer, manage life with cancer, find community and connection, and build wellness and resilience. Many of our programs are available in different languages.

Appendix cancer is a rare and evolving disease — and staying up to date on new research, treatment options, and clinical trials can empower patients and caregivers to make informed decisions. Advances in care are happening all the time, and being informed means being prepared. At Appendix Cancer Canada, we're committed to sharing the latest updates so you can navigate your journey with confidence and clarity.

"I realized quickly I needed to be my own advocate which meant staying informed so I could ask the right questions."

Lindsey Wolfram, Patient & Co-Founder, Appendix Cancer Canada

Facing an appendix cancer diagnosis can feel isolating—but you are not alone. Across Canada and beyond, a growing community of patients, caregivers, advocates, and healthcare professionals are working together to raise awareness, share knowledge, and support one another.

Why Get Involved?

1. Emotional Support & Connection

Connecting with others who understand your journey can be deeply comforting. Whether through online forums, support groups, or community events, sharing experiences helps reduce feelings of isolation and fosters a sense of belonging.

2. Access to Shared Knowledge

Patients and caregivers often become experts in navigating treatment, side effects, and the healthcare system. By engaging with the community, you gain access to practical tips, trusted resources, and lived wisdom that can help you make informed decisions.

3. Advocacy & Awareness

Appendix cancer is rare, and many people—including medical professionals—may not be familiar with it. By joining advocacy efforts, you help raise awareness, improve education, and push for better research and treatment options.

4. Empowerment Through Action

Getting involved can be empowering. Whether you choose to volunteer, share your story, participate in fundraising, or contribute to research initiatives, your voice matters—and your actions can make a real difference.

5. Building Hope

Community involvement fosters hope. Seeing others thrive, hearing success stories, and witnessing progress in research and care can inspire resilience and optimism.

Staying Organized:

  • Track your symptoms especially after eating and treatments to help identify any trends so they can be addressed with your care team.
  • Bring a notebook and if possible, bring another person to your appointments. It can be challenging to remember everything discussed so having a second person can be very helpful and supportive.
  • Consider recording your appointment discussions so you can focus on the conversation (remember to let the other person know).
  • Bring prepared questions to your appointment so you don't forget to ask them.
  • Keep your medical information in one place so it's easy to find.

Nutrition & Wellness:

  • Ask for a referral to a dietitian. You may find that your body does not digest food the same way as before. It will be very important to ensure that you are eating properly and maintaining a healthy weight.
  • Eat nutrient-rich foods.
  • Stay hydrated.
  • Consider using an app to track your food, some apps like Cronometer can be shared with nutritionists and healthcare professionals. There are also many free apps available online.

Lifestyle & Wellness:

  • Exercise: Gentle movement like walking or yoga can help relieve stress, promote healing and digestion.
  • Sleep & Stress Management: Try mindfulness or guided meditation.

"I tried to focus on things I could control. Sleep seemed like a logical choice for me and through my research I learned the body heals during sleep! It took time to learn new habits like avoiding screen time before bed and putting my phone on do not disturb but my sleep and health improved."

Lindsey Wolfram, Patient & Co-Founder, Appendix Cancer Canada

If you're caring for someone with appendix cancer, your role is vital — and often challenging. This section is dedicated to caregivers: offering guidance, emotional support, and practical tools to help you care for your loved one while also caring for yourself.

Understanding the Caregiver Role:

  • You may be helping with medical appointments, medications, emotional support, and daily tasks.
  • It's okay to feel overwhelmed — caregiving is demanding.

Practical Tips for Caregivers:

  • Keep a shared calendar for appointments and medications.
  • Keep care and medical records in one location.
  • Ask for help — don't try to do everything alone.

Emotional Support for You:

  • Watch for signs of burnout.
  • Talk to a counselor or join a caregiver support group.
  • Take breaks and prioritize self-care.

Planning Ahead:

  • Discuss advance care planning with your loved one.
  • Help organize legal and financial documents.

Useful Links:

Packing for the hospital can be very stressful, so we have provided this guide to help. Most hospitals will provide a list of what to pack prior to your surgery, but this list may also help you with a few extras that patients have added over time. Please note that these are suggestions and not necessary for everyone.

IMPORTANT: Please ensure that your medical team knows about any medications that you are currently taking and confirm if you will need to bring them to the hospital. Bringing these items will vary depending on the type of medication and where you are having your surgery (for example, in a different province or country).

Clothing

For the Hospital
  • Slippers - for walking (some prefer non-slip, slip on sandals/slides but others like comfy slippers)
  • Robe — for walking in the hallway, if you don't have one consider using a second hospital gown backwards as your gown (helps cover the opening in the back while you are in the hall) Note, while you are attached to the IV pole/your arm won't go into the sleeve and the robe will be on your shoulder.
  • Pajamas — some like to switch to pajamas or use pajama pants, loose boxers/shorts with their gown after several days (when tubes are removed) but many continue to use the hospital gown for their entire stay as your doctor/nurse will need access to your incisions regularly
For Discharge
  • Comfortable slip-on shoes
  • Comfortable stretch waist pants and loose-fitting clothing to wear home
  • Soft, loose bras (no underwire) as they may bother your incision
  • Thank you cards — consider sharing your gratitude to those who helped you during your stay

Toiletries/Bathroom Supplies

  • Soft toilet paper (if you are doing bowel prep at the hospital which is common in the US)
  • Disinfectant wipes and air freshener (may come in handy if you are sharing a bathroom)
  • Lip Balm/Chapstick/Hand Moisturizer - your lips and skin will be very dry
  • Eye drops — for dry eyes
  • Shampoo (in the US it is common to shower before surgery and they recommend washing your hair as you will not be able to shower for several days after surgery)
  • Dry Shampoo — if you want to wash your hair before you shower again
  • Body wipes — some hospitals provide these, to use to freshen up when not able to shower, nurses will help with this as needed
  • Deodorant
  • Face wash
  • Toothbrush/Toothpaste/Floss/Minty Mouth wash
  • Hairbrush/Hair ties/Hat/Bandana/Headband

For You — Comfort and Convenience

  • Notebook and pen — Write down important things like questions for doctor/nurse, symptoms/issues you are having, or keep a personal journal. Your memory may not be as good as usual right after your surgery, and this may help.
  • Earplugs/Eye mask/cover - may help with sleeping during the day and when it is loud
  • Blanket — soft, warm blanket (can also be used for the car ride home when travelling a far distance)
  • Pillow(s) — Many like having an extra pillow for comfort and also to use to hold against their incision when coughing or sneezing.
  • Reading glasses
  • Back scratcher
  • Reacher/Grabber tool
  • Laptop/tablet
  • Charger for Electronics — consider packing an extra long cord as sometimes plugs are hard to reach. Some newer beds also have USB charging in the side of the bed.
  • Kindle/Book/Magazine/Puzzle/Colouring books with pencils - Note you may not feel up to reading for a while and may find it hard concentrating so don't bring too much
  • Headphones/Earphones - Consider making a music playlist or downloading some podcasts, some find listening easier than reading after surgery
  • Gum — To help wake up bowels but beware too much gum chewing causes excess gas which we don't want
  • Peppermints/Ginger/Lemon - Chews, lozenges and candies may help with nausea
  • Items that make you happy, feel supported and hopeful — Pictures of loved ones, stuffed animals, small items

Car Ride Home

  • Many patients like to use a towel, small pillow or similar items to help ease the discomfort of the seatbelt
  • Vomit/carsick bag
  • Kleenex/Napkins