Help with navigating your breast cancer journey
A while ago, Marie graciously invited me to guest blog this month, in order to gather some information designed to help newly diagnosed breast cancer patients navigate their journey. I must admit I had been hesitant to send it, knowing all that Marie is experiencing right now. When I saw her request for help, I knew I should submit my guest post. As we are all learning through Marie’s posts, nothing ever really prepares us for hearing bad news.
I have no doubt you remember exactly where you were when you heard the words “you’ve got cancer.” I was home alone on a Wednesday night when I got the call. After my internist delivered the news he told me he’d arranged a consultation for me at 9:00 Friday morning with a breast surgeon. When I hung up, I just sat there, too stunned to even cry. I told my husband as soon as he got home and together we waited for Friday to arrive.
It never even occurred to me to prepare for my appointment. I just figured I would hear what the surgeon had to say and move forward from there. Well, that was a mistake.
Don’t get me wrong. The doctor, who ultimately ended up being my surgeon, was bright, articulate and straight to the point. The problem was me. Being an exercise specialist, I just assumed I would be able to follow what she was talking about. What I didn’t factor in was the reality that I would sit there like a deer in headlights, nodding my head, pretending to process what she was telling me. It wasn’t much better for my physician husband either.
Before leaving, the surgeon asked us if we had any questions. I thought she’s kidding, right? I had so many questions I didn’t even know where to start. As a matter of fact, it wasn’t until weeks later, I learned of everything I should have been asking, but didn’t know at the time. As we headed to the elevator I turned to my husband and said there’s got to be a better way to do this. From that moment forward, I concentrated on creating that “better” way.
With the help of many breast cancer specialists and fellow survivors I have written Diagnosis: Breast Cancer, The Best Action Plan to Navigate Your Journey an indispensable resource for newly diagnosed patients. The book provides worksheets for every aspect of the journey from what questions to ask each specialist to how to keep track of all the accompanying paperwork and medical expenses.
My primary goal in writing this book was to make sure that anyone diagnosed with breast cancer could have help navigating their journey. I felt so strongly about this that I went ahead and submitted a proposal to the GE $100M Healthymagination Open Innovation Challenge and it was accepted! Out of over 500 ideas submitted to the challenge, this idea has received the most comments from survivors and their families, leading me to believe I have struck a chord in patients needs.
Marie has offered to help me gather some data by posting the two surveys below. I am interested in learning about how you organized your cancer materials and about your exercise habits. Marie let me know her loyal readers have many opinions they would be willing to share, along with their expertise.
If you are currently a breast cancer patient, please click on the survey below:
If you are through with treatments, please click on the survey below:
If you would like to show your support or leave a comment for the GE challenge please click below:
Although nothing can prepare us for hearing the words “you’ve got cancer”, we can be prepared for how to move forward. I sincerely thank you for helping me and future patients out. My thoughts and prayers are with all of you this holiday season.
About the Author
Cara Novy-Bennewitz is an Exercise Physiologist, Certified Cancer Exercise Specialist and Medical Ambassador for The American Cancer Society. She is a seasoned educator and presenter who’s dedicated to empowering patients throughout their cancer journey. Cara is currently working on creating a website designed specifically for helping cancer patients develop a safe exercise program during and beyond treatments. Please feel free to contact her at email@example.com
What a great idea – I would certainly have benefited from something like this when I was diagnosed and going through treatment three years ago. Happy to fill out survey for Cara.
Thanks for helping and Happy Holidays!
“Before leaving, the surgeon asked us if we had any questions. I thought she’s kidding, right? I had so many questions I didn’t even know where to start. As a matter of fact, it wasn’t until weeks later, I learned of everything I should have been asking, but didn’t know at the time. ” So true!!!
Sounds like an excellent resource
Excellent posting! Yes, I remember my cancer diagnosis as if it were yesterday. Nobody forgets. And I, too, was like a deer in headlights. How can one not be when receiving such devastating news?
It sounds like your book is resonating with many people. It is much needed in the world.
I will certainly be taking a look at these resources! I had a similar experience when given my diagnosis in April. The doctor said “Do you have any questions?” and I asked, “Am I going to die?” I don’t remember his response, just that he could not give me a straight forward answer. I WISH now that I had been more prepared with the right questions!
I just last night told a friend about how hard it had been for me to absorb information as I was making treatment decisions. (I was telling her why I hadn’t told her, the first person I saw after the doctor called me — “because I thought it would be silly to tell you something that could not possibly be true.”) And I just an hour ago got off the phone with the plastic surgeon’s nurse, who said, “We told you . . . We always tell patients . . ” . And maybe she did/they do. I am a month post-surgery, I am a professional woman with two advanced degrees, almost all of my work requires sophisticated communication (which includes listening!) skills — and I have no recollection whatever of any such conversation or, apparently, of several others.
ANYTHING that would help women acquire, organize, store, and retrieve information would be helpful.
I wish I had known to bring a tape recorder at the time of my treatments, which is a completely acceptable practice. If you don’t have one see if your cell phone can record your appointments. Until people are thrown into this world, I don’t think they really comprehend all that it entails that’s why I am really hoping to get this book to patients at the point of their diagnosis. Will they absorb it all? Not all at once, but they or their loves can refer back to it at anytime. What are your next treatment steps?
I am in the middle of tissue expansion for an implant. I am sure that I did not understand that 31 days post surgery I might lose 2 days (during Christmas week! and I’m a pastor!) to debilitating pain. I am also sure that I did not understand how long this process would take. Two weeks ago I decided to forgo the whole thing, then I felt so much better than I decided to proceed, and now this. Each day is another lesson in how completely unpredictable my body’s responses are.
I spent one-to-two hours each with two breast surgeons, a plastic surgeon, a radiation oncologist, and a social worker (not to mention tons of research online and conversations with experienced women) before deciding on my course of treatment. I think that I ended up with a pretty good layperson’s understanding of DCIS x2 (which isn’t saying much, since drs don’t seem to understand it either) but, in retrospect, I had no comprehension of the physical assault that reconstruction via implant would entail.
That’s the beauty of these wonderful group resources, you can check in with others, always keeping in mind EVERYONE is different and ultimately you and your treatment will figure out what is the best action plan for you. Wishing you a speedy recovery and healthy New Year!
Fantastic, always happy to help. Looks like we are on similar paths to help our following Breaties have a more comfortable experience.
Wondering if you would be interested in doing a lessons learned video for my website. breastcancerll.com.
Just tried to do your survey…The patient link works but the survivor link takes you to survey monkey home page not the survey. let me know when it’s fixed..
jillian – breastcancerll.com
I just fired off an email to fix the link. The troubleshooting said if two people are using the same computer, there may be a “cookie” marking where the last person finished, and will need removing. I am awaiting more info. I would be happy to help with a video! Feel free to contact me at firstname.lastname@example.org
I look forward to hearing from you, Happy holidays!
Cara, thanks for writing this tremendous resource. I just finished the survey to let you know the value of such a workbook, especially for someone like me, diagnosed in 1996, which now seems like the dark ages. Congratulations on winning the challenge. I appreciate all you are doing for us who live with this disease.
Thanks for your support Jan. I’ve only made it into the first round of the Challenge so far, winners will be announced by March of next year. The entries are not judged on number of votes, however I am hoping to flood GE with patient comments, helping to highlight this gap in patient education that needs filling, whether by me or someone else! Happy & Healthy Holidays.
I forwarded this website to my sister and best friend both who are battling breast cancer , please share with your friends and readers http://www.breastcanceranswers.com as well, we have found this website to be a huge helpful resource for our friends and family who are fighting this, or newly diagnosed!
Jody, thank you for sharing this site. wishing you and your family a happy and HEALTHY New Year!