A new cancer diagnosis brings a lot. It brings a lot for you to feel (confusion, sadness, maybe relief that there’s an answer to a long series of physical mysteries, maybe anger because why do you have cancer).
And it brings a lot for you to do. It’s a big first question: what do I do now?
1. Bear with us, but take a big, deep breath, another, another, another
You’re totally right, it seems like there’s no time. There are so many appointments to make, people to tell, life administration to complete, and big, big sadness-anger-fear-sadness to feel. It’s so much. It’s hard to know, especially in the first moments of heightened emotions, but people who have done it before can attest: it’ll all get done. So big breath; and if you’re like us and you like a guide, here are some helpful breathwork techniques.
2. Give yourself space to feel literally whatever you’re feeling
You may feel disbelief, anger, frustration, confusion, depression, powerlessness. These are really hard things to work through. Feel those things, without any guilt, even the things that feel weird and ugly and dark, we’ve been there. Jadey started “Between Us” for exactly this reason.
This is a time when anxiety and uncertainty can be rampant. “You know that nothing is certain, but that’s always been true,” says Dr. Norman Straker, one of the founding members of the psycho-oncology team at Memorial Sloan Kettering Cancer Center and a psychiatrist who works closely with cancer patients. There are going to be so many big feelings, many stemming from this uncertainty; and give yourself space to feel the full range of them. To start to get your mind around there, here’s Jadey’s guide to starting to process your diagnosis.
3. Pursue Any Other Needed Testing & Schedule Appointments
There is often a scramble after a diagnosis for a series of additional scans, blood tests, or other diagnostics. Try to find out what additional tests you may need, and start to set up those appointments. Some appointments may take time to schedule (often, new patients have a longer wait) or receive insurance authorization. Whenever possible, it’s worth asking if you can coordinate the scheduling of multiple appointments to limit hospital or doctor’s office visits.
And once you and your doctor have set a treatment plan, try to schedule your treatment appointments right away; you can always change them once treatment starts if you need to adjust, but you want to make sure everything you need is reserved and blocked out.
4. Collect All Your Questions
You probably have plenty of questions for your oncologist. We recommend writing them down to bring to your appointments. If you’re not sure where to start, Jadey has a helpful list of questions here. If this is something you’d like to know about, ask about fertility preservation (Jadey has a guide to asking about fertility here). Many doctors won’t bring it up, unfortunately, so it might rely on you to broach the topic.
5. Appoint a trusted friend, partner, or family member to bring to your appointments and help you organize your medical information
“Talk to somebody as soon as possible about your diagnosis,” says Dr. Straker, to reduce your feelings of being stuck and alone. He says that once you have people to rely upon during the initial stages of diagnosis, along with treatment, it’s much easier to take the next steps.
“There's a lot of information conveyed in each and every one of the medical appointments that lead up to treatment,” adds Dr. Kristen Carpenter, the director of women’s behavioral health at The Ohio State University.
This person can help you stay organized throughout the process by doing simple tasks, such as taking notes during appointments and making calls on your behalf (make copies of your insurance information, ID, and any important medical documents so they have it). You’ll have to designate them as authorized representatives with your doctors and insurance company. This can feel like a hassle, but it’s worth making these calls upfront because it will save you hours of listening to on-hold music). If you have multiple people helping, make sure they set up a good system for relaying information with each other and with you.
Lauren McDermott, a 22-year-old student in Toronto who was diagnosed with breast cancer, brought her mom to all her appointments. “There’s so many questions and things that you’re thinking of that it’s really helpful to have [someone] who can step in and be the organizer and planner.”
6. Keep track of your medical records
Make sure to keep track of all of your medical records, test results and images, either in hard copies or digital formats–both so that you can have copies for yourself and so you can forward copies to other doctor’s offices. Find out if there are pathology slides, image disks, hard copies and documents that need to be sent if you’re seeking second opinions or seeing multiple doctors; these can sometimes take a couple days to order and acquire. Hospitals will often send them directly to other hospitals, but you can ask for your own copies as well.
You should also sign up for any online patient portals. This is one of the easiest ways to stay up to date on your doctors’ notes, says Dr. Annie Su, a medical oncologist in Houston. “Doctors’ notes will list everything that needs to be done in preparation to start treatment or referrals to other specialists,” Dr. Su says. The portal is also a great place to ask non-urgent questions of your team; and can sometimes even be faster than waiting for a phone call back.
7. Find a team of doctors you trust
You will be spending a lot of time with your oncology team, so it’s important to find providers that you trust and feel comfortable with.
“Build a partnership with your doctor,” says Eliza Weber, who experienced treatment for her own cancer and her daughter’s. Your oncologist should be reliable in their communication, and they should ensure that you feel comfortable to ask any questions you might have. “If your doctor is offended by your questions, you’re with the wrong doctor,” Eliza says.
And if you don’t have direct access to a doctor who specializes in your form of cancer, you can arrange for your doctor to consult with a specialist to help inform your course of treatment. Jadey’s has a guide to seeking a second opinion here).
8. Understand your diagnosis
Get your doctor to write down your diagnosis and any subtype. The Black Breast Cancer Alliance (read our interview with BBCA CEO Ricki Fairley here) also suggests repeating any information back to the doctor to make sure you understand.
You want to strike a balance between understanding your diagnosis but not falling into the scary rabbit hole (tricky; we know). Experts we’ve spoken to say to avoid Googling your diagnosis first thing; wait until after your first appointment with an oncologist; and really try to avoid things like “my diagnosis + life expectancy.” Everyone’s story will be different. You might even consider tapping a “Google point person” who you can text your questions to, they can Google, and report back findings (often in a more measured fashion than the hose funnel of the internet).
9. Expand your team
This is a lot coming at you, and there are also a lot of talented (knowledgeable) people who can support you. A few team members you should have (or consider):
– A nurse navigator (the hospital should provide you with this person)
– A social worker who can provide unbiased support (this person differs from a therapist; they’ll likely connect you to resources, local support groups, and programs your hospital offers)
– A physical therapist (our guide to movement and exercise during treatment and after is here)
– A therapist; maybe one with experience working with people who have had cancer (Jadey’s article on that here)
If your doctor does not recommend or connect you to these resources, you can request that. Emotional support is especially crucial
10. Make a plan about who to tell and how
Sharing your diagnosis can be one of the toughest parts. You can start small here; first share with the people closest to you, if you haven’t already. We have advice about talking to your children, your parents, and your workplace.
Then, with the next set of friends and acquaintances: remember this is your experience. You get to decide what information gets shared. Consider what’s most comfortable to you, rather than what you think other people would want. You can call, you can text, you can email; you can have your best friend, sister, or partner do that. We’re also fans of the pre-text text like: “Hi, I have something pretty heavy to share. Let me know when it’s a good time.”
And after that circle, the choice is yours. It can be the world, if you want. “Some people are really comfortable sharing their entire journey on social media, and that is a perfectly reasonable way to convey to a large audience,” says Dr. Carpenter. Sharing on a large-scale platform like this has a lot of benefits. It can reduce the burden of having to give updates over and over again to different groups of people, and it can connect you to people with a similar experience.
If the thought of repeating the same story over and over makes you want to hide under your blankets, we get it. You can identify a person in your life to relay news and updates on your behalf, which can minimize the burden of communication for you. They can send group updates via email, group chat, or a site like Caring Bridge, a nonprofit that provides a platform to share updates with groups of people. You don’t even need to be included in the thread, if you prefer– you can just let your loved one know what information you’d like shared and then never think of it again.
Have a plan for your personal communications rep: people will want to know if they can reach out to you, how they can help, who they can tell. You can request whatever you want (texts only with no expectations of writing back; or scheduling a nice long phone call during an inpatient stay).
11. Recognize you’ve already done a lot
This type of thing is hard from the beginning. Give yourself a moment of kind acknowledgement.
The next days, weeks, and months will have their share of challenges. It’s important to remember to treat yourself kindly and gently, rely on the people around you who are there to support you, and ask for help when you need it.
