If you hear the words “You have cancer,” what do you do next?
That probably sounds like a silly question, but you’d be surprised how many smart, savvy, worldly people aren’t sure where to turn.
Odds are the doctor who broke the news to you isn’t from cancer world. He or she is probably a very good doctor, but cancer is not their specialty, so your next move is to find a doctor who lives in cancer world and it’s my opinion, find an oncologist who is connected to a strong, research minded cancer center where aggressive treatment is backed by good, solid cancer research.
That is where you will build a team: a team personalized to your cancer. It can be done.
Be aggressive in your search for this team and by all means get an advocate to be by your side as you navigate this new world.
DON’T be afraid to ask questions. You and your advocate are the captains of this ship. Without the knowledge you can’t guide your future treatment.
It will be a bumpy road in the beginning, as you learn the language of cancer, decide on treatment options, and deal with new surroundings, but you’ll get there.
Your first step is crucial in all of this: Find the right cancer specialist, some one who is familiar with YOUR cancer.
You’re on your way.
July 2, 2015 @ 8:27 am
I think that I’ve suggested it before. There should be a guide “So You Have Cancer…..Here Is What To Do First”. Most of us learned the hard way..trial and error. The diagnosis is hard enough to process but the overwhelming number of questions and then the answers to those questions compound a patient’s anxiety, confusion and fears. If every oncologist’s office had a handout to help guide the patients and families, it would be a good start
For most of us veterans in the cancer world, the info is intuitive. For a newbie, it is a foreign language with no translation available. The guide would be something that could be read and re-read and re-read again as the journey unfolds and the patient becomes more accustomed to their new world. Our readiness to hear what we really must hear and understand is not possible as we hear “You have cancer”.
Laurie, I’m sure that via your personal contacts with patients and families that you already do this each day. You share what you’ve learned to try to help others and I’m sure that it is really appreciated. I would also guess that your wisdom, suggestions and hints and To Do’s go in one ear and out the other because the new patient’s focus is on “I am going to survive”, “How much time do I have”, “Is the treatment worth the pain and discomfort”.
A patient’s everyday, real world guide would be so special. The cancer wars are still raging. New patients are coming for their first visits.
July 2, 2015 @ 4:26 pm
Al,
You’re right on all counts…Many days, I find myself suggesting the next step to newly diagnosed patients.
A simple handout card, the size of a book mark, since so many patients and caregivers turn to books while they wait in doctor’s offices and clinics, would be so useful.
“Steps After Diagnosis”…what do you think?
Laurie
July 3, 2015 @ 7:15 am
I would agree. A short version, like you suggest, would be great for the newly diagnosed. Most of us remember that we were already overwhelmed by the words “You have cancer”. So more information could not be absorbed just yet. Later, a more extensive pamphlet could be handed out that provided more information along with the Why’s and Why Nots.
Friends and acquaintances know that I battled cancer so they direct their friends and acquaintances to me for support and encouragement. I send them my attempt at information, advice and direction called Tips for the Newly Diagnosed. You and I know all of this because of our history but the new patients usually don’t think of these things.
You could do a bookmark type front and back and plastic. Put them all over Hopkins in the most obvious spots but particularly where the oncology nurses are working.
Happy 4th of July!!