From When to Get Tested to What Got Them Through: What Women Who Have Had Breast Cancer Want You to Know

From a 'previvor' who had a preventative prophylactic double mastectomy to women who continue to be treated for breast cancer, five women tell PEOPLE what they want others to know about the illness

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Though Breast Cancer Awareness Month has come to a close, it's important to keep routine care, treatment and outreach to those affected top of mind year-round.

PEOPLE spoke with five women about their experiences with the illness. From taking part in early screenings to the nicest things their families and friends did for them as they went through treatment, here is what they want you to know about breast cancer.

Some responses have been shortened or edited for length and clarity.

On what they wished they knew before being diagnosed:

Get checked early.

"The importance of getting checked and not taking your regular checkups for granted. And don't take it lightly. Get checked if you are having any symptoms. You never know when it's something that needs to be addressed immediately."

— Anna Pastrano, diagnosed with stage 4 cancer at 43 years old

"Most women should not wait until 40 to get their first mammogram. I was 38 when I was diagnosed with bilateral breast cancer – two tumors in each breast, three of which were malignant. Fortunately, it was caught early at stage 1B. Early detection is key to fighting cancer, especially as a Black woman as we have lower breast cancer survival rates. Everyday I am grateful for my amazing doctor at Wellstar North Fulton Hospital in Georgia who saved my life by sending me for a mammogram and ultrasound."

— Ebony-Joy Igbinoba, diagnosed at age 38

Learn about the different types of breast cancer.

"I wish I knew that breast cancer is so much more than those two words. There are sub-types of breast cancer and it is not 'advertised,' nor is it talked about in the media. Not one person going through this disease experiences the same effects as another patient going through the same 'type of breast cancer.' "

— Norma Marquez, 43, currently diagnosed with triple-negative ductal carcinoma breast cancer

On what they wish other people knew about breast cancer:

That people who have breast cancer are stronger than you think.

"I wish people understood that even though there is no cure yet, to not treat us like we are fragile or that we are going to drop dead in front of them. I have learned through this journey who my real friends are and who weren't. It took this disease to really see who was in my court."

— Norma Marquez

Do not be afraid to go to your screenings.

"One thing I wish other people knew about breast cancer is that it's treatable if caught early. It's important not to be afraid to get your screening. When you go early and keep up your mammograms and screenings it makes things a whole lot easier. For me, I would get my annual mammograms like clockwork. Earlier this year, I went for my annual screening and it turned out I also needed an ultrasound and biopsy, all of which was done in three hours at New York-Presbyterian/Columbia University Irving Medical Center. A few weeks later, I underwent surgery followed by treatment. It all happened so quickly, but because it was caught so early, I knew that everything was going to be ok."

"Everybody's experience is not going to be the same. For me it was the early detection that made all the difference. I had already made up my mind that I was not going to go through this with a defeatist attitude. Instead, I found the positive aspect and latched on to that: it's treatable and I am going to beat this."

— Michelle Robinson, diagnosed with breast cancer at 67

Courtesy of New York-Presbyterian/Columbia University Irving Medical Center

Michelle Robinson

I had already made up my mind that I was not going to go through this with a defeatist attitude. Instead, I found a positive aspect and latched onto it: It's treatable and I am going to beat this."

— Michelle Robinson

Have conversations with your family members about your health history.

"It's important to have conversations with your family to identify and understand your risk factors for cancer so you can get screened before the recommended age if needed. It's also important to know that besides BRCA (BReast CAncer gene), there are several different genetic mutations that can put you at greater risk for developing cancer. For instance, I have an ATM (ataxia telangiectasia mutated) mutation that places me at high risk for breast and pancreatic cancer. Women with breast cancer are at higher risk for getting ovarian cancer. Men can also get breast cancer and should be knowledgeable about these risks."

— Ebony-Joy Igbinoba

"90-95% of women who undergo testing for high-risk breast cancer genes will test negative, but may have additional breast cancer risk factors that still need to be managed. So much goes into breast cancer risk, including a woman's own health history, family history and genetic markers. A better understanding of your risk can help you and your doctor make more informed decisions."

— Nicole Lambert, breast cancer previvor and Myriad Genetics' president and certified genetic counselor

Remember that everyone's experience is different.

"I wish people would stop stereotyping what a person that is battling cancer 'should look like.' I do not necessarily fit into the mold of what a cancer patient looks like, and it's hard to hear people say things like, 'You don't look sick!' I did not know that society expects us to look a certain way, mostly as a result of how movies and TV shows have portrayed breast cancer. I also wish people could understand to treat us like they did before. I would rather people didn't show sympathy or pity or treat us like we are dying because the truth is: we are all going to die someday. We never know when or how."

— Norma Marquez

RELATED LINK: Mother and Daughter in Remission After Getting Breast Cancer at the Same Time: 'It Was Scary'

On the thing, person, or item that got them through their treatment:

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"Family, friends, and most of all faith."

— Anna Pastrano

"First I would say my faith in God got me through. Then, my support group got me through my treatment. These are the people I specifically chose to walk with me through the process — including my family, sisters, nieces, nephew, friends and my pastor. Additionally, the oncology nurses at New York-Presbyterian/Columbia University Irving Medical Center were so encouraging and patient, especially when it was difficult to find a vein to administer my chemotherapy. I have floating veins. I would close my eyes and start praying and then begin humming a hymn. One nurse would just hum or begin singing the hymn with me which was very comforting and calming for me. When I lost my appetite for several weeks, my oncologist always encouraged me to eat to keep up my strength to endure to the end. I had the very best care possible from surgery to chemotherapy to radiation."

— Michelle Robinson

"As a single mother, fighting for my two young children kept me going. They started kindergarten and first grade a few weeks before I was diagnosed, and my focus was to make sure their needs were met. My faith in God also provided me solace and strength to fight. Ultimately, I became my own superhero and decided to fight for joy and my family, friends, and community that supported us with love and generosity."

— Ebony-Joy Igbinoba

On how it feels to take control of their own health:

Courtesy of Nicole Lambert

Nicole Lambert

Knowing my family history and own risk factors provided the information I needed to take control of my health.

— Nicole Lambert

"How empowering it can be. My mother fought breast cancer twice and my aunt died from metastatic breast cancer. My aunt just barely made it to see her son graduate from high school. I knew that I didn't want to miss a single moment of watching my own son grow into adulthood, his graduations, his wedding, all those moments that I look forward to. My results from a genetic test and risk assessment revealed I had a significantly increased risk of breast cancer. The risk was high enough for me to make a personal decision to have a prophylactic mastectomy. Knowing my family history and own risk factors provided the information I needed to take control of my health. I'm lucky to have had the surgery when I did because when I received the final pathology report, it revealed that I already had two early-stage breast cancers. If I hadn't known the results of my assessment and acted on those results, the outcome could have been much worse for me. Everyone deserves access to those answers."

— Nicole Lambert

RELEATED LINK: Breast Cancer Awareness: Products That Give Back in 2021

On the kindest thing that someone did for them while they were in treatment:

"Having my friends put their lives and work on hold to take me to my appointments."

— Anna Pastrano

"Having my sister take me to chemo and another sister-friend drive me home took the burden of traveling to and from treatments off of me. Chemo left me fatigued at the end of the day. Knowing I had a designated driver for the trip home allowed me to relax."

— Michelle Robinson

"There are too many to count. A few examples include GoFundMe, organizing Christmas gifts for me and my kids, organizing a meal train, helping with childcare while I was at appointments, transporting my kids to school and activities, virtual retreats, family trips, prayers, and numerous letters and messages of support."

— Ebony-Joy Igbinoba

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"I love cards, so receiving cards of encouragement meant a lot. I also had friends who would occasionally drop off a dinner for me. Receiving phone calls also got me through — I had a number of senior citizen friends who were constantly calling to check on me. There is also a blanket that two of my nieces sent me — things like that were so comforting. Even small thoughtful actions like sending a fruit arrangement meant so much to me."

— Michelle Robinson

"The kindest thing someone did for me while going through treatment was when my friend Jacqui picked me up out of the blue. She didn't tell me where we were going, but she and her daughters took me to this cute coffee house — I am a coffee lover — and it felt so good to get out of the house and enjoy a great cup of coffee with wonderful company. She has always been doing that, showing up out of the blue so that we can hang out at her place, go for random day/night trips and spontaneous shopping trips."

— Norma Marquez

On what they wish someone would have done while they were going through treatment:

"I think it's important that, when you know someone going through breast cancer, you're checking in on them regularly and offering a hand when needed."

— Michelle Robinson

"The COVID-19 pandemic hit in the middle of my chemotherapy treatment. Prior to that, my family and friends were able to come to appointments and treatment. It was very isolating going to appointments alone, however, people continued to check on us virtually. I learned that no one fights alone, even in the middle of a pandemic."

— Ebony-Joy Igbinoba

Courtesy of Wellstar Health System

Ebony-Joy Igbinoba

I learned that no one fights alone, even in the middle of a pandemic.

— Ebony-Joy Igbinoba

"When you have cancer, the whole family has cancer, your entire family and circle of friends are all battling it with you. I wish someone would do something for my mom. She has been my rock through this entire journey. It is not easy for a mother to hear that their child has a terminal disease no matter what age their child is. She has been present for every appointment, even with the pandemic, even though she was not allowed inside, and has been supporting me all the way. She deserves a nice trip or something that even I have not been able to do for her."

— Norma Marquez

RELATED LINK: Jill Biden Marks Breast Cancer Awareness Month with a Personal Story: 'I Had to Do Something'

Their advice for people who are currently being treated for breast cancer:

Courtesy of MD Anderson

Anna Pastrano

Stay strong and positive. Have a lot of faith in God and enjoy life one day at a time because tomorrow is never promised to anyone."

— Anna Pastrano

Maintain a healthy attitude.

It's very important to maintain a healthy attitude, which is easier said than done, but the more you begin to maintain that healthy outlook, it gives you hope."

— Michelle Robinson

"Stay strong and positive. Have a lot of faith in God and enjoy life one day at a time because tomorrow is never promised to anyone."

— Anna Pastrano

Follow your doctor's orders and take notes.

"If you are currently being treated for breast cancer you need to change your diet and follow the doctors instructions closely. I'd also recommend journaling your appointments or taking notes because this is something you can reflect back on and track your progress along the way.

— Michelle Robinson

Make informed decisions.

"I'd also advise all breast cancer patients to make informed decisions. In my experience, getting a mastectomy was a very difficult decision to make. It was an amputation of my breast, a part of my womanhood that I hold dear to me from breastfeeding my kids. I chose it because it significantly decreased my chances of cancer returning."

— Ebony-Joy Igbinoba

Take care of your mental health.

"Seek help from a therapist to address coping with your cancer diagnosis. Onco-psychologists are a great option as they specialize in helping cancer patients. Support groups and peer counselors are also wonderful resources to help navigate the hard realities of the life ling journey in staying cancer-free."

— Ebony-Joy Igbinoba