Hearing that you have cancer can be overwhelming, so it is important to take notes and ask questions.
Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.
While shopping at our local discount book store last weekend, I looked up and recognized an old acquaintance. I had to look twice because this woman was wearing a head scarf tied fashionably around her bald head. We made eye contact and I gave her a big hug. (You need to know that I also go up to women I don’t know when they are clearly bald and ask the same question).
“So, is this a chemo cut?” I asked her, nodding toward her bald head. She replied yes and said that she was getting ready for surgery after four months of chemo for a stage 3 breast cancer.
It had been a while since I talked to a newly diagnosed breast cancer patient and as she asked questions I found it all coming back. We found a place to sit down so we could talk for a minute.
She was full of questions, some of which I could answer. I stay away from most questions because you never know the parts of their diagnosis that you don’t know. I learned this the hard way by asking someone if she was HER2-positive. She didn’t know what that was and burst into tears for fear it meant she was dying. We have to be very careful about what information we offer because the first thing I remember is how confused I was by all the information coming at me. We don’t hear everything to begin with.
When my old acquaintance asked me a question I told her just this, but also to ask me any questions, and I’d see if I could answer them.
Part of her confusion was why she had had chemo before surgery. It astounds me that surgeons don’t make sure their patients understand this before proceeding. I know that they explain that in advanced cases they want to hit the tumor with chemo immediately in hopes they could shrink the tumor to keep it from growing any more. Some women have had the preoperative chemo work so well they could have a lumpectomy. I explained this and she nodded. I had just jogged her memory about what the doctor already told her.
She then told me her tumor was triple negative. She knew what this meant, that her options for treatment were limited. There are drugs for estrogen receptor tumors and for HER2 but not that many for triple negative.
She had other questions about why she needed radiation and why she couldn’t have both breasts removed. I told her to take out her notebook and write down her questions and not to stop asking her doctor until she understood all his answers.
When she said she didn’t have a notebook, I recommended she go then and buy one. Every newly diagnosed person should have a three-ring binder that has pocket dividers for medical information, insurance papers, support information and dates for upcoming events. If cognitive issues appear, it is harder to remember where you are supposed to be and when.
When we hear the word “cancer,” it immediately becomes harder to remember what people say. We forget, and unless it is written down where we can read it again, it may be lost forever.
There is so much paper coming at us that without a notebook to keep track, it gets lost. Every visit to the doctor or the navigator should be filled with questions about how you feel both medially and emotionally.
Remember that feelings are not right or wrong. If you are having a feeling, it is legitimate.
Unlike when I was diagnosed, there is much more effort to care for our emotional needs so we understand that there is a new normal for our lives. If you are newly diagnosed, you need to pay attention to both your medical and emotional healing. Continuing to live will be fuller if attention is paid to the quality of that life.
Since belonging to a support group helped during my healing, I always recommend that women find a support group where they can hear from women who have been there. I also give the caveat that every woman and every diagnosis is unique, so to keep that in mind when women who have walked the path start giving advice. And yet, listen. Women who have been there are the true experts.