What I Wish I Knew: Have Someone With You

At LBBC, we know one of the best ways to learn about living with breast cancer is by hearing from others who have been there. This blog is part of a series called What I Wish I Knew, which features people diagnosed with early-stage breast cancer in the past who want to share their knowledge with those who are newly diagnosed. What I Wish I Knew will update once a month.

I was diagnosed 12 years ago at age 55 with breast cancer. Mine was caused by radiation treatment I received to treat Hodgkin’s disease, which I was diagnosed with in my late 20s.

I thought I was over and done with the cancer experience when my Hodgkin’s disease was successfully treated. What the medical establishment did not know then was the potential long-term side effects from the type of radiation treatment given at that time. The research and literature on long-term effects was just coming out when my breast cancer was discovered by a routine mammogram.

With the past experience I had — from learning I had Hodgkin’s to how the treatment plan was determined for it (radiation vs chemo) and how my follow-up care did not include a focus on long-term side-effects — I felt I needed to be better equipped in my ability to make decisions regarding my breast cancer treatment.

As a two-time winner of being thrown for a loop with a “Surprise, you have cancer,” experience, I know how hard it is to take in the medical information you receive at such a traumatic and stressful moment in your life. It is very hard to pay attention.

Plus, you are entering a world that, unless you are a medical professional, is foreign to you. It is hard to keep your bearings. And it is hard to hold your own as a patient among the professionals whose world it is. They are there to help you. In my case, my life was saved twice over by my doctors and by the care I received, but it can still be daunting to navigate the system that you need to save your life.

What I learned and wish I had known from the start was how important and helpful it can be to have someone with you at your appointments — especially those where decisions are made about diagnosis and treatment options. You may have a loved one with you but sometimes that person can be very stressed as well and not able to take in the information any better than you can.

Bringing a trusted friend as a recorder was a revelation to me. It gave me the security of knowing that what was being said was being recorded and that I’d be able to go back to it when I could be more relaxed and take it in. I sometimes recorded the meetings on my phone as well or had a friend do it.

There will be an avalanche of medical terms thrown at you from the start. You need to know what these terms mean. You need time to process the information. And it feels like there is no time. This is where a trusted recorder can be so helpful. I had several friends who became my recorders. I picked them for their willingness to help, their stable personalities, and their own availability to come with me to appointments. While they were able to take notes for me, they also did not know what many of the medical terms they were recording meant. But by having them recorded, I (if I was up to it) or someone else could look up the terms later and translate them. I could also go back and ask my doctor more specifically what she was referring to.

I sought a second opinion for treatment options. Every call to a new doctor began with answering the question about my diagnosis. While this may seem like a simple thing, it wasn’t for me. The terminology used to describe my diagnosis was, as I said, foreign to me. Trying to describe what my condition was and why I was seeking a second opinion required a level of competence and familiarity with breast cancer that I never had. With the recorded notes in front of me I was able to more coherently present the information to get the help I needed.

I do wish I’d known from day one of “getting the news” how hard it would be to comprehend everything and how having a second set of eyes and ears would significantly contribute to my ability to advocate for my own survival.

Marilyn Frank, 67, is from Philadelphia, Pennsylvania. She was diagnosed with early-stage breast cancer in 2007.

If you are recently diagnosed and would like to learn more, be sure to check out our Guide for the Newly Diagnosed. If you want to participate in the What I Wish I Knew series, you can share your story with Living Beyond Breast Cancer.