Welp, that was unexpected, wasn’t it? You’re minding your own business, doing this thing called life, and then BAM! You find yourself at the doctor’s office thinking, “I have cancer… now what??”

I’ve been there. I know how disorienting it feels. So I wanted to share what I’ve learned and hopefully provide some guidance to those diagnosed after me.

We have so much on our plate at the time of diagnosis, that we can’t possibly find all the resources that can help us when we need them. So here are a few bits of wisdom I wish I had known at the time of my diagnosis, most of which I’ve heard other survivors emphasize the importance of as well.

First of All, Take a Breath

You just got hit with a bombshell. You likely have a thousand thoughts coming to mind, but you can’t focus or process a single one of them.

Don’t feel like you need to rush into action. Take a moment (like, a whole day) to sit with this and fully feel any emotions that are coming to you. Don’t hold back. Cry it out, scream into a pillow, go for a walk, or whatever you need to work through your emotions so you can start processing your thoughts more clearly.

On that note, buy a Dammit Doll. Your hospital’s cancer unit may have a store that sells them, or you can find them on Etsy. The infusion center at my hospital has a small store with helpful items, and they sell Dammit Dolls for $5. Totally worth it. Buy two of them. Then, beat the spit out of one. Seriously, it’s cathartic. Imagine it’s your tumor and just go to town. Throw it at the wall, run your car over it a dozen times, whatever you need to get out that physical restlessness.

Save the other doll for later. You’ll need it.

Above all, please know that this is not your fault!

Read that again.

It’s so easy to start down the rabbit hole wondering how you got here. You’ll run into all sorts of ignorant articles on the internet insinuating that somehow you gave yourself cancer. And if I wrote out how I feel about those people and their audacity of patient shaming, you would learn real quick that I can cuss like a sailor and don’t always have a filter. If you take away only one thing from this post, let it be that you understand you are not to blame.

Research a Second Opinion

This does not necessarily apply to everyone. I, for one, did not get a second opinion. I had two doctors – the radiology doc and the doc who did my biopsy – tell me that it was certainly cancer just by looking at it, and the biopsy report confirmed it. My oncologist has a great reputation, so I trusted his knowledge.

If you have a similar experience and you don’t feel the need for a second (or third) opinion, that’s awesome!!

However, if you feel that something isn’t right, go with your gut and look into who you would prefer to see. Perhaps this is a different doctor at the same hospital, or perhaps it’s a doctor in a different city. Either way, don’t be afraid to talk to someone else if you feel you should.

This goes for any step of your treatment. If your oncologist is recommending a treatment or procedure and you have other thoughts, you can always consult another doctor.

Be sure to get a copy of your medical records to have on hand for your consultation so that the new doctor has as much information as possible on which to base their opinion.

Connect with a Psychologist or Counselor

When you’re first diagnosed, your hospital will often connect you with a nurse navigator. This person has a wealth of information as to what resources are available to you, including psychologists or social workers. The hospital likely has a social worker on staff who you can talk to for this very reason.

If not, however, talk to the nurse navigator or look into your insurance’s network to find a psychologist, preferably one with experience dealing with cancer treatment.

My nurse navigator and the team at the infusion center had offered multiple times to connect me to a social worker. I had refused each time. I felt that I was dealing well and processing my emotions through my journaling; surely I wouldn’t gain anything from talking to someone else.

But looking back, I wish I had taken advantage of this. There were thoughts I didn’t want to talk to family or friends about because those thoughts were heavy and I didn’t want to burden them further.

There are emotions and thoughts like that that will come up for everyone. Maybe these thoughts are about your future, your career, your kids, your ability to have kids later, your sexual health and relationships. Whatever it is, there’s one topic that will really cut deep, and a psychologist who understands cancer treatment can really help you work through this.

Also worthy of noting, the mental impact doesn’t always come right away. Throughout treatment you’re supported and cared for. But once treatment ends, it’s easy to feel like you lost your support team. During treatment you have other things to focus on, like how to deal with the nausea and fatigue; but afterwards you’re back in this place of “now what?” and needing to process what all you just went through.

Along these lines, get a journal. Even if you don’t usually journal, I really recommend having one on-hand to document what you’re dealing with or help you process your thoughts.

Who’s In Your Support Team?

This isn’t a topic usually covered by your doctors or internet guides to navigating a diagnosis. It certainly wasn’t advice I had heard – it’s just something you vaguely realize needs to happen. So best to be forewarned this is often overlooked, but crucial to your care.

Think of your family and friends that you want to keep close during treatment and recovery.

You’ll also want to consider who can drive you to treatment, stay with you after surgery, or lend an ear so you can vent. It takes a village to get through this – don’t feel you have to do this alone! Let people help you with making meals or running your errands; this is a blessing for both you and them to be able to help!

Take someone to appointments

One of the biggest pieces of advice I can give is to take someone with you to your doctor appointments. I’m especially talking to those of you who think it’s unnecessary because you’ll take diligent notes and don’t want to bother anyone with your schedule. I was one of those people. But thanks to our family history, my mom already understood the importance of this and insisted someone accompany me. And for good reason.

First of all, half your doctor appointments will be spent sitting in the exam chair wearing a paper gown or robe with half your goodies exposed to the room. It’s not exactly a prime position to be taking notes on surgery and chemo.

(It gets easier. I consider myself modest with exposing my body, but after a couple months I’d practically flash the doctor my chest as soon as he walked in the room because I knew at some point he’d need to take a look.)

But you’re also going to be given a ton of information. You’re going to have other thoughts to process that will get in the way of note-taking. So take someone with you who will take good notes you can understand later once you’re in a mindset to do so.

Get Organized

If you don’t already have one, get a 3-inch (or larger) three-ring binder and dividers to help you stay organized. You’re about to get a lot of paperwork from discharge instructions to insurance EOBs and bills to helpful resources. It’s best to keep this all together in one location.

I also recommend decorating the front cover with a pretty picture or an inspirational quote. It’s a happy pick-me-up on days you have doctor appointments.

I also recommend a composition book you keep with the binder. Put a copy of each doctor’s business card so you have their information handy. You may be surprised how often you have to copy their contact information for other physicians and surgeons you’ll see. But it’s certainly handy when you need to call the office for appointments or follow-ups.

Also, write any side effects or symptoms in this composition book. During treatment, one day can bleed into the other and it’s hard to keep them straight, especially when you won’t see your oncologist for another couple weeks. This was also the notebook where I kept notes from my doctor appointments. The key is to keep all the information organized and together so you don’t have to search for it when you need it.

Cancer + Careers

When I was diagnosed, I had an atypical job with contract work, so I simply didn’t go back to work. But I had no idea how complicated it can be to deal with your career during all this!

Cancer + Careers is a non-profit organization that specializes in helping cancer patients navigate the waters between the workplace and cancer treatment. They have information to help you from the moment of diagnosis, including who you should tell (or if), what you should say, and your rights as a patient in the workplace.

The website has a lot of information, and you may already feel inundated with information just about your diagnosis and treatment. I recommend starting with these free publications that you can download or have mailed to you. You can also start with this video that looks at disclosure and privacy that talks about how to approach your employer about your diagnosis.

I did an online conference with Cancer + Careers and I learned so much from them! I highly recommend connecting with this group! (If you’d like to learn more about my experience with the conference, you can read about that here.

Stay Off Google!!

I know, it’s tempting to start an internet search of your symptoms and what to expect. But it’s also exhausting, not to mention sometimes terrifying. Some websites are all about doom and gloom, worst-case scenarios, or possible but unlikely situations. It’s a dark rabbit hole to start down…

If you can look at online information objectively, taking it with a grain of salt, and not scaring yourself with all the what-ifs, then have at it. But I caution you to look only at reputable websites or resources that your doctor recommends.

By the way, this includes blogs like this one. I do my best to provide advice based on my own experience, crowdsourced advice from other survivors (like this article), or data from trusted sources. But you and I can have very different experiences and side effects even if we have the same diagnosis.

The point is to just use caution. You’ll be getting a lot of information and a lot of opinions that may or may not prove helpful for you. Don’t hesitate to walk away or to stay off WebMD and Google if you simply can’t handle any more information or find yourself reading a lot of negative stuff.

The Takeaway

I know, this was a lot. And you already have a lot going on. But I felt that explaining my experience and why these things are key was important to include.

So if you just scrolled to the bottom looking for the Cliffs Notes, here you go:

1. Take a breath. This is not your fault.
2. If you doubt your diagnosis or treatment plan, get a second (or third) opinion.
3. Connect with a psychologist or social worker. Your hospital should be able to help with this.
4. Start thinking about your personal support team and who you trust to accompany you to doctor appointments, treatments, and surgeries.
5. Get a three-ring binder and composition book to stay organized with paperwork you receive, notes from doctor appointments, and logging side effects.
6. If you have a job, look into Cancer + Careers. (There are other resources and websites linked above.)
7. Stay off Google! It can be a rabbit hole of horrible information, so be cautious what resources you use.

I hope this article has been helpful for you. I know there are many more action steps to take after a diagnosis, but this should help you get started during the initial shock.

Know that you are loved and you are supported. Yes, this sucks, and treatment will suck, but you will get through this. <3

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