Getting diagnosed with cancer is understandably a terrifying experience. So many questions and emotions start flying through your head that it’s hard to know where to even start. Many times, you’re given the news when there is still more details or information needed to get the full picture of what you’re up against… the lack of information and knowledge can be overwhelming. So, you heard the word cancer- what’s next?
1. Choosing your cancer center:
There are a few things to consider when choosing your cancer center. Sure, convenience and location are important, you’ll be spending a lot of time there- but you also want to make sure you’re getting the best care. Cancer Centers that are associated with Academic Medical Centers and that are NCI designated will be the most up to date and involved in the latest research and ensure you’re getting the latest, most effective, cutting edge treatments and procedures- including clinical trials. CLICK HERE TO FIND ONE NEAR YOU
2. Choosing your care team:
You will want to have a good, open relationship with your doctors- I mean, you are trusting them with your life! When choosing your oncologist, surgeon, radiation oncologist, etc, you’ll want to pick someone that specializes only in your disease group.
This makes it easier for them to keep with the latest research and recommendations. Some doctors have even done extra years of training in their specialty area called a fellowship. Also, finding a group a doctors that use a multidisciplinary approach (working together to discuss your plan and come to a decision as a group) can give you an extra layer of comfort.
unsplash | Luis Melendez
3. Getting the full picture:
There’s a lot more to being diagnosed with cancer than just the title. Ask your doctor at the first visit what else needs to be done to get all the information needed before starting treatment. This could be radiology scans, more testing on the tumor sample, additional biopsies, or other procedures and appointments. This will give your team information about your stage and specific type of cancer, helping them to determine the next best steps. The first visits with your doctors can be a blur.
Write your questions down before your appointments so you don’t forget to ask them all. Be a partner in your health decisions along with your doctor- if you don’t understand something, ask! Also- get to know your nurses. They will be your point of contact for all your questions and will help coordinate all your treatments. They can also help you break down the information from your doctor.
4. The waiting game:
In some cases, the diagnosis phase can take weeks. It can be very difficult to wait for all the information to be collected and discussed in order to come up with a treatment plan and start date. It can be helpful to find a useful distraction to pass the time. It could be a new book, a TV show to binge, or even a road trip. Don’t let your mind travel to the dark/ worst case scenarios. It’s very easy to let your mind skip ahead to all the unknowns the future holds, but focusing on gathering the facts to prepare for treatment is best for now.
5.Don’t focus on the “stats”:
Associated with every cancer diagnosis and stage, there are several stats that could be discussed with your doctor. This could be survival rates, recurrence rates, incidence rates… anything. Just remember when learning those figures that every person is different and every cancer is different. Those numbers are based on every person that has had that diagnosis… it does not consider other illnesses, age, or other factors. Learn the information, but don’t get lost in the numbers and let it discourage you. Ask your doctor what you can do to decrease your risk for recurrence or future cancers… like changes in diet and exercise.
unsplash | Janko Ferlič
6. Use internet with caution:
The internet is full of information, and not all of it is accurate. You can find claims of fake miracle cures, horror stories of treatments that didn’t work or misdiagnoses, someone sharing their cancer has came back, or simply false medical information. When researching your diagnosis, ask your doctor what websites they recommend to learn more. cancer.gov is a great place to start. When exploring blogs, support groups, and other online communities- avoid comparing yourself to other stories and outcomes. This can lead to more anxiety, especially in a newly diagnosed person. Some may find it beneficial to limit their online searches all together.
7. Gather your tribe:
Share the information of your diagnosis when you feel comfortable. Some may share with social media or large groups; others may choose to keep it private with a smaller number of supporters. The decision about how open you are with your support system is personal, but keeping your cancer diagnosis a secret could be very harmful for you and your relationships. Being able to lean on others and let them assist you through this (believe me, they want to help), can be a real gift.
Always a good idea to bring a support person with you to visits to be an extra set of ears. Your support system may also offer meals, rides, gift cards, child care, and other things that can be useful- it’s ok to accept the assistance. It’s also ok to tell them if you need space for a moment.
unsplash | Ben White
8. Get supportive services on board right away:
Cancer centers offer much more than just medical treatment. Ask your doctor about getting other services involved to assist you now instead of waiting until you have a problem later. This could be dietitians, social work, psychology, health and wellness classes, exercise groups, financial counseling, support groups, and more.
You may even be able to meet those with the same diagnosis and treatment plan as your own- making connections with those who intimately understand what you’re facing can be so comforting and encouraging. Cancer can affect every aspect of your life, attack it from all angles and utilize the resources that are available to you.
9. Consider second opinion:
Not every person needs a second opinion, but they can be very useful. If you have more than one treatment option, if your case is not straightforward, if your status has changed unexpectedly, if you are getting care at a local cancer center and are interested in getting an opinion from a larger center (see: #1), or even if you just want the peace of mind that comes from knowing two teams agree with your plan and have reviewed your case- then you should get a second opinion. Your doctor will never be offended or upset if you seek a second opinion, they will support it- and many times will even help set it up.
10. Let yourself feel the emotions:
This is an overwhelming process, one unlike you’ve probably ever experienced. Fear, anger, guilt, pity, and despair are all very normal emotions. Starting a journal could help you process your thoughts. Use your support system and allow them help you. You are about to embark on the fight of your life, FOR your life. Be kind to yourself and take it one step at a time. Treatment for cancer can be exhausting, and figuring out how this fits in your already full life can be a challenge. Try to not focus on the “what ifs”- you can’t change what has happened… but you can decide how you handle it from here forward. You can do this! You’re not alone!
All thoughts above are completely my own and based on personal experience as an Oncology Nurse and cancer survivor. The statements in this article are not meant to endorse any specific organization or provider and in no way are meant to be given as medical advice. If you have a question about your diagnosis or treatment — ask your physician.
About The Writer:
Lindsay is a mom of two sweet kids, wife, and proud Kansas Citian. She worked as an oncology nurse nearly her entire adult life. She thought she knows what patients go through when they are given a cancer diagnosis, she didn’t. On September 2016 she was diagnosed with stage 3 colorectal cancer and her own journey began. Follow her thoughts from both sides of the port at Here Comes The Sun and you can also follow her on Instagram.