“You have cancer.”
“We found cancer.”
It doesn’t matter how the words are framed. Those words will become a defining moment, a dividing line in your life. Yes, you have just stepped on to what may seem like a run-away train.
The oxygen is sucked from the room, our chests may constrict, the words begin to sink in and for most of us, our brains begin screaming, “Do Something. Get it OUT!”
It is in very rare cases that immediate action is necessary. For the majority of us, the most important thing to do in this moment is to stop, breathe and realize you will be faced with options. Decisions will be made and it is important to fully understand the treatment choices that are being offered by your doctors.
First and most importantly, there is no “right way” to do cancer. There’s only the way that works best for you.
Know what kind of patient you are. Some of us are fully immersed in our care while others may prefer to rely on a trusted friend or loved one to help translate the options.
If at all possible, do not go to any of your appointments alone (especially the initial appointments).
Get a journal or notebook, and a sturdy backpack or totebag. You will be overwhelmed in the beginning and likely on information overload. If everything is kept in one place, when your mind recovers from the shock, you will be thankful you were clever enough to keep things organized from the very beginning.
Have someone with you to take notes in your journal or, if the doctor agrees, record the appointment. You will forget things or you may reflect back hours later and likely seek clarification of something.
If you seek second opinion, having your pathology report reviewed by another doctor is not the same as having slides looked at by a second pathologist. In most cases, the pathology report is clear. If yours is one that seems a bit ambiguous, ask your doctor if s/he feels the slides should be reviewed by a second pathologist.
There’s no such thing as a dumb question. If you feel you are being rushed and your questions are not being answered in a way that you fully understand, let the doctor know!
If you feel uncomfortable with your doctor, it’s okay to seek a new doctor. We’re all different and a style that works for one patient may be completely wrong for another.
Get copies of your test results before leaving the doctor’s office. Keep everything in your journal. Keep it all in one tote bag or backpack.
Be aware that there’s a good chance some well-meaning friends may offer unsolicited advice. Stick to evidence based treatment choices. A prepared response, “Thank you, I’ll be sure to mention that to my doctor at my next appointment” is a good way to cut those conversations short.
Use the calendar alert on your phone to schedule time to chat with your community. Online #BCSM chats are every Monday, 9pm eastern. Your mind will be busy with everything else, so use the tools you have to remind you of the comfort and sanctuary that is out there waiting for you.
Now what? First and foremost, do not drive yourself crazy trying to understand how or why you developed breast cancer. There is no place for blame – you did not do anything to contract this disease. We can do everything “right” and still develop cancer.
Do your very best to stop your mind from reviewing every aspect of your life trying to identify what you might have done to prevent this. There is no way to prevent cells from turning cancerous. You did nothing wrong.
Be gentle with yourself. And most of all, remember that you are not alone.
You have found a soft place to land in the BCSM Community. We are here to support you as you navigate unchartered waters.
Diagnosed with invasive lobular breast cancer in 2006, AnneMarie Ciccarella is author of the blog, Chemobrain: In The Fog, named a top breast cancer blog by Healthline for three consecutive years. Find her on twitter @chemobrainfog.
Heidi Floyd is an author, cancer patient, speaker,blogger, advocate, wife and mom – not always in that order. Her work and passion is to provide assistance and compassion to families on a cancer journey, until the disease is eradicated. Find her on twitter @FollowHeidi.
Disclaimer: #BCSM does not provide medical advice. The information provided is for general information only. No online site should be used as a substitute for personal medical attention.