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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My heart goes out to all of you but, I took all your comments to heart as old as I am I admire each and everyone of you as your carrying on was amazing to me..I don’t know whether I could weather the storm as well as all of you have–I have alot of faith in God but, not in myself..Thank you for sharing I for one appreciate sooo much. God bless each and everyone of you.
For years I kept putting off getting a mammogram. I had had them before but thought, it could never happen to me. I was diagnosed with type 2 diabetes and had to see my doctor more than I normally did. Every time I saw him, he would ask me when I was going to get my mammogram. So I mainly got one, so he would stop asking. My cancer was found with this routine mammogram.
The mass was biopsied and biopsy was positive for cancer, an MRI was done, which showed another mass and possible others. The larger one was biopsied and positive also. None of my masses could be felt with a self breast exam. I cannot express enough how important it is to get a routine mammogram. This has been an emotional rollercoaster. I’m a hospice nurse, so this really hit home. I was nervous,scared, and upset. I couldn’t talk about it unless I started crying. I was diagnosed in September. I’m having a double mastectomy November 25th. I’m 56 years old. After testing, it was determined that my cancer is not hereditary, I have never drank alcohol or smoked, have been fairly healthy till diabetes diagnosis in March of this year. My cancer is hormone related. As a nurse, I knew that by being put on hormone therapy post menopause, you risked getting cancer, that’s why I never wanted to take hormone therapy after menopause at age 50. What I did not know is you can still get hormone related cancer without being put on hormones and I wonder why hormone levels aren’t checked more often after going thru menopause to keep hormones check and regulated to prevent cancers such as mine. There are a lot of things about my cancer diagnosis that I wish I knew before.
I wish i had known that just because you have PTSD, or severe anxiety conditions or mental health issues that not all Dr’s would ignore your queries when you find you have been right all along and dismissed for years. See, it’s exhausting when you already have a genetic condition that is life threatening to advocate constantly for yourself, when you notice the lump growing and try to ignore the signs. I did, for years and I just want others to know, one day you will find someone who will listen to you, be strong and most of all, breathe through the hard days….. There will be good ones again soon …. Sarah.
I wish I’d known that the people I let know of my diagnosis would feel more traumatized than I would.
I wish I’d known that it would be all about them and their suffering then it would be about my side effects of confusion, nausea, headaches, and depression.
I wish I would’ve been more prepared to help them.
I couldn’t agree more. Very few stuck around. Only made me a stronger person.
I wish I knew just how strong I am and how faith and support from my loved ones will get me through anything 🩷
I was 80 when I was diagnosed with breast/bone cancer. I wish I had insisted on a mammogram. Apparently after a certain age they won’t give you one. Even though I had manual exams it never was discovered.
I wish I knew that there is not always such a thing as a true “Survivor”. I was dx barely Stage 1 in 2011 went through 5 years of surgeries, Falsodex injections monthly. 13 years later was found to be Stage 4 with mets to lungs, bones and liver in 2024. So now treatment for life and the anxiety and financial hardship is unrelenting.
Reading these brings back so many memories from when I was first diagnosed. I really and truly didn’t know a thing about breast cancer – all the types and stages. I made decisions entirely based on a surgeon’s recommendation before I even saw an oncologist. My advice is to get multiple opinions and trust your instinct! I also wished I had researched more before my bi-lateral mastectomy. I had no idea there were different types of closures. Bottom line – don’t settle!
I have had the best companionate care throughout my journey with breast cancer. I am very lucky to have had the level of love and time that it took to help me through this very trying time by my family and friends. I learned how much it helped to reach out to people and share with them about this journey. You do not need to be ashamed of any feelings you may experience in this time. And there is a new one every day as we travel through treatment. It is the hardest thing I have ever experienced. You must advocate for yourself and feel free to question anything and everything that you don’t understand. Take notes and make notes for your next appointment. Eat healthy so you can give your body and mind the best chance for healing. Rest often and do lots of research to keep informed on what is happening to you. I learned that having the most positive attitude that you can helped a lot. We are worriers and have strength that we didn’t know even existed! Push through the hard days as there is sunshine once agin after treatment. I am working hard to handle the challenge of worrying about reoccurring cancer now that I have completed all treatments. Tying to put the cancer experience behind me, in a positive way. I am 76 years old, diagnosed at almost 75. It is never too late. Push on!
I wish I had known that there are different types of machines at different facilities that are used to give mammograms. Some are easier on the breasts than others. Made much lighter in weight. Also some technicians are are gentler when using the machines. The different types of mammograms and lastly I could have just had Ultrasounds or Breast MRI
I wish healing didn’t come with so much loss, loss of certainty, long-term planning, financial security, loss of my body as I knew it, my sense of safety, the life I expected and the luxury of thinking far ahead.
I wish I would have known that all the preparation for surgery and after surgery was not as important as being mentally and emotionally ready. Having to go through so many surgeries and changes, all while not having the support from my family like I should. I don’t think you can really be ready for that but would expect that they would be there without having to ask for the help or let them know how difficult it is or even after telling them how it really is.
All of these are spot on. I wish I would’ve known that your sex life with your spouse will never be the same. I wish I knew how hard it is to bounce back to yourself or that you may never even know who that is anymore and I wish I would’ve been given better care after surgeries I’ve ended up with 17 total cause my skin kept coming apart got infections was told the pain was just healing process until I ended in the hospital with Mrsa and spread to a blood infection and having another emergency surgery and still not happy with how my implants look but don’t wanna have another surgery. stage 3 grade 3 triple positive invasive ductal carcinoma. Ended up with a bilateral mastectomy with flap and a hysterectomy.