This blog post was compiled from responses received from our breast cancer patient and survivor community members. All suggestions and advice are their own and are not intended for medical or mental health advice.
Breast cancer treatment and survivorship is rarely a straight line. Sometimes, the journey is full of unexpected twists and turns, where reality doesn’t always line up with expectations. Other times, the learning curve of all the new information that you didn’t know existed can be overwhelming.
While nothing can really prepare someone to hear the words, “You have breast cancer,” hearing advice and wisdom from women who have been there may provide a small bit of comfort and community on the hard days. We recently asked our community of breast cancer patients and survivors, “What do you wish you’d known before your diagnosis and treatment?” These are their responses.
“I wish I had been more confident and asked more questions at the beginning. I just followed the advice of the doctors, and I didn’t feel comfortable asking questions. As the months passed, I started speaking up and voicing my opinions and asking questions. I researched and found useful information, and was completely shocked when the staff and physicians listened to my concerns.” -Emily
“I wish I’d known that breast self-exams are mandatory. That is how I found my cancer. Also, you will be bombarded with too much information after diagnosis, which is overwhelming. And the doctors will give you the worst-case scenario. Don’t believe it will happen to you. Take it a day at a time. Take baby steps with your treatments, and try to remain positive.” -Elizabeth
“I wish I had known about the anxiety you feel between each scan and the fear of going through it all over again.” -Michelle
“I knew nothing about triple-negative breast cancer (TNBC) before my diagnosis, especially how the treatment is so different than other breast cancers.” -Debbie
“I wish I had known how much my body would change. Not just breasts, my whole body.” -Amy
“As a two-time breast cancer survivor, this last time being triple negative, I wish I had been told prior to a diagnosis, yes, a diagnosis is a game changer, but you can still maintain some control of your life.” -Veronica
“I want women to know that being told you have cancer is not a death sentence! Medicine has come so far. Immunotherapy is a game-changer. Have faith that you will get through it. The road is long, but just take it one day at a time!” -Sapa
“I wish I had been told I’d lose feeling from armpit to armpit after my double mastectomy.” -Kasey
“I was not prepared to be suddenly faced with potential future infertility post-treatment.” -Erin
“I wish I had known that no one will fight harder for me than me. I wish I would have known that I could push for faster testing, for a quicker start to treatment, push for more clarity when I didn’t understand all the words that were thrown at me the week of diagnosis.” -Melissa
“When I was diagnosed, I had no idea how many different types of breast cancer there were. I also didn’t know that triple-negative was so different from the others until I started looking things up for myself.” -Rachael
“I wish I had known that the fight is never over, but keep a positive attitude and you can achieve anything.” -Trisha
“I wish I had known that it is as much of a mental battle as it is a physical battle.” -Sydney
“I wish I had known that this would be the most alone and most loved I would feel at the same time.” -Hayley
“Brighter days are definitely coming. You just have to learn to dance in the storm.” -Adlina
We would love to hear from you. Let us know in the comments what you wish you had known before a breast cancer diagnosis and treatment.
National Breast Cancer Foundation is here for you as you navigate a breast cancer diagnosis. Visit our website to learn about NBCF breast cancer support groups, obtain free educational resources, or find a patient navigator in your area.
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