I’m a breast cancer survivor of almost three years, and even though that’s a fairly short time, I am now considered a veteran among the ranks of other breast cancer survivors.
Nothing can, or will ever, prepare you for hearing a doctor say: “I’m sorry to tell you, but we found cancer in your biopsy.” Or how my oncologist put it: “We found three little bits of cancer”, it feels like the flood gates open up, ripping your world apart, because in a real sense it has.
But, listen, when you learn you have cancer, it is OK to feel whatever you feel, and act however you act, on the first day or two. Unfortunately, sooner or later, you will need to tell your family and friends. I know you don’t want to, because you don’t want to ruin their day or have them witness you falling to pieces. But trust me, they want and need to know so they are able to a good job of helping you.
I’m know you’ll hear some people say, “You can fight this.” As you will understand soon, cancer is not a fair fight. I never saw myself as fighting cancer, but fighting to find the right treatment, the right doctor, the right hospital and the right support services.
After you find out you have cancer, it is important not to panic and not to think in terms of the worst-case scenario. This is one of those times where the glass half full is a must. Treatments, doctors, facilities and research are ever evolving.
You probably won’t know the type of cancer or stage until your appointment. You can try to learn more over the telephone, but doctors and other medical professionals often won’t agree to that. Chances are they will give you some indication of what you are dealing with, but not all the details.
You should feel good that you took the steps you needed to discover the cancer. Waiting for a diagnosis would only have made things worse. Give yourself credit that you made it to the let’s-tackle-the-problem stage.
Suddenly, you will be forced into countless medical appointments, personnel and procedures. You are poked, prodded, examined, questioned, analyzed and subjected to all kinds of potentially embarrassing. Yes, even humiliating situations. And not just once, but over and over and over. On top of all that, you must absorb tons of confusing information, try to formulate semi-intelligent sounding questions about all of it and then make life-changing (and often body-altering) decisions you never wanted or intended to make. In a nutshell, it’s all over-whelming and then some.
During the chaos and confusion, you are also supposed to morph into some sort of super-hero-like self-advocate, which is hard enough during relatively calm medical times, but after a cancer diagnosis, at times it can feel next to impossible. Everything happens so fast but at the same time, you might feel as if you’re moving in slow motion – at least that’s how it was for me.
But somehow you get it together (more or less anyway) and begin to make your way through the maze that is cancer.
What choice do we have, right?
I do not have any ground-breaking, never-before-heard-of tips and there is no particular way to manage the chaos that follows a cancer diagnosis anyway. There is only your way. You are the captain behind the wheel of this moving ship. Still, sometimes a few suggestions from others who’ve been there can come in pretty darn handy.
So, here are a few tips for the newly diagnosed which might be helpful:
1. Self-advocate with as much gusto as you can muster because let’s face it, this is your life.
After I learned I had breast cancer, I discovered that taking control helped a lot. At first you feel you have no control. But there are things you can take control of — and doing so gives you the power and not the cancer.
Listen to all of the options, get a second opinion, let well-meaning but off-the-mark advice from friends roll off your back, and keep calm.
But remember, self-advocating is a learning process too; you will get better at it over time. Trust me. You will.
2. Don’t allow yourself to be rushed into decisions before you are ready to make them.
And it’s perfectly fine to have things explained over and over until you understand the information or are satisfied with the answers. I always maintain it’s a good idea to ‘sleep on it’ before you make a big decision.
3. Take someone with you to appointments IF you want to.
Allow family and friends to be there for you. I was surprised that when I went to my oncologist, my husband, and mother all came with me. It meant so much, and made hearing both the news and the options easier. Let people help even if you feel you can go it alone. Enjoy the joys that make you smile. Cancer has a way of reminding you of what is really important in life.
Also, take notepads because you will be writing stuff down and, of course, write your questions out beforehand. And then remember to take them with you. Some doctors don’t mind if you record meetings, but some do so it’s best to ask.
4. Get second opinions if you want to and if your insurance allows for it.
5. Remember there are no dumb questions; plenty of embarrassing ones, yes, but no dumb ones.
6. Get organized with medical files or have someone else do it for you.
Always ask for printed copies of reports, put them in labeled folders when you get home and consider signing up on an online patient portal if your facility offers this. This allows you access to at least many of your medical reports 24/7 and you can email your doctor too.
7. Seek out support. It’s there.
I wish someone had told me this one at the start of my personal cancer shit storm. Family support is vital, but it’s so helpful to talk with others who understand whether it’s online (which you have done, if reading this), at an in-person support group or with a trusted friend who’s been there. Spreading the support around even just a little helps not only you, but also “lightens the load” a bit for your friends and family members.
Following a cancer diagnosis, things will feel undo-able at times. At times you may feel over-whelmed, angry, frustrated, scared, cornered, lost, helpless, and who knows how else.
But somehow we muddle through.
And you will too.