Breast cancer survivors tell all: ‘If you feel something and it doesn’t show on the mammogram, keep pointing it out’

Do you know the signs? (Anna Tarazevich/Pexels stock image)

For someone who has never had to experience or endure breast cancer, it might be understandable that there are questions involved. Does a diagnosis typically come as a surprise, or do people often suspect that something feels not quite right?

How often should we be performing self-examinations, anyway?

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(At least once a month, the experts say).

We asked some of those questions, and more, to our readers -- and as you can imagine, there was quite a range when it came to the answers we received.

Like with many things in life, it’s hard to generalize. Many people’s responses sounded familiar, and you could certainly find some common themes, but each story was also different in its own way.

By the way, respondents had the option to self-identify however they’d like. We asked for names, ages and locations, but people were able to provide as many information or as few details as they’d prefer, which is why you’ll see some full names, and some people on a first-only basis. Some responses have been edited for length, clarity and grammar.

We hope by sharing women’s stories, it will encourage and inspire others to stay proactive about their own health.

Here are those answers to a few of our questions.

How did you learn of your cancer?

Kelli F., age 35: “For some time, I had a pain in my armpit that I thought was just a muscle pull. I told myself I would mention it at my upcoming annual doctors appointment. A few days later, when I was in the bathroom, I bent down and noticed my breast skin pulled differently when I moved my arm. There was a dimple when I raised my arm or reached down. I knew then what it could be. What it would be. I moved my doctors appointment up and discussed with the PA, and I’m grateful that she listened to me and agreed to a mammogram and ultrasound, despite my age. I was 33 years old at a the time. Although she praises me for my good eye, I praise her for listening to me when others would have said, ‘You’re too young.’ I did the mammogram and the ultrasound at the hospital where I work, and the radiologist called me at work to come in for a biopsy. It was a day I’ll never forget. Diagnosis: Stage Ia/IIb breast cancer (the pain in my underarm was a positive lymph node).”

A 43-year-old from Greencove, Florida: “A routine mammogram found the small tumor. It was invasive ductal carcinoma. I had dense tissue, which makes it more difficult to see a mass on imaging. I wish more women knew about the risk of having dense breast tissue. Doctors don’t point that out enough. Because of my dense tissue, I opted for bilateral mastectomies. Some thought mastectomies would be overkill, but it wasn’t until the post-surgery inspection of the removed tissue that they found the second tumor. This tumor was near my chest wall. Because of the dense tissue and the tumor location, this small tumor did not show up on the preoperative imaging.”

Anonymous: “There was clear fluid from my breast leaving a tiny dot on my pajama top some mornings. This was happening just before the COVID-19 stay-at-home orders. I made an appointment for a mammogram, but it was canceled during the stay-at-home. When it was clear to go to the appointment, I told the technician what was going on. Nothing showed on the mammogram. An ultrasound was performed and the technician and doctor didn’t see anything. But, each time the wand for the ultrasound touched a sensitive area, I pointed it out. It was so tiny. A biopsy was done and the fluid was examined. It was then that the breast cancer was found. Because it was at the very beginning stage and it hadn’t moved throughout the breast, it was classified as Stage Zero. The cancer was removed, not my breast. My surgery was two weeks ago and I’m doing great. I’m cancer-free. Of course, I have medical visits ahead, but it’s worth it. I’ve shared with my female family members and my friends to pay attention to the changes that occur to your body, and not think that the issue will go away, but to get it checked. If you feel something and it doesn’t show on the mammogram, keep pointing it out to the doctor. Be aware of your body changes and the sensitive parts of your body that feels oddly different.”

Amanda Almanza, 38, from San Antonio: “I went in to my eye doctor appointment and he asked me if I was OK, health wise. He stated I had clusters of white blood cells in my eyes, and that’s usually because the body is trying to fight something. I told him I was relatively healthy and would hardly even catch a cold. But I was feeling pretty fatigued more often. I chalked up the fatigue to work and family life being busy. He requested that I follow up with my primary care doctor. I actually never followed up. I was barely 32 years old -- and didn’t think much of it. It was about three to four months later that I went to my gynecologist appointment, where my doctor felt a lump in my breast. He asked if I had been doing my self-exams and I couldn’t remember the last time I did. He sent me for a 3D mammogram. Within a matter of about two weeks, I had an ultrasound, a biopsy and was officially diagnosed with breast cancer, just four days after my 32nd birthday.”

Robin Holbrook, 61, from Canton, Michigan: “I had gone for my six-month checkup (I had calcification deposits, so I was having a mammogram done every six months). The doctor who read the films said they had only changed slightly, and she felt it was safe to wait another year for my next follow-up. I questioned that, saying, ‘I had a friend who was recently diagnosed with breast cancer who had calcification deposits.’ She told me to get dressed while she re-looked at my films. When I returned, she said, ‘It wouldn’t hurt to see a surgeon.’ I made that appointment. He also said he didn’t think there was anything to be concerned about, but we should probably do a biopsy. The biopsy came back positive for invasive lobular breast cancer. I was 48 at the time. My mother died of breast cancer at age 62. Therefore, I opted for a bi-lateral mastectomy. It has been 14 years with no recurrence. I hate to think what my prognosis might have been had I not pushed the doctor to take a second look at my mammogram.”

How did you feel?

Kelli F.: “I felt cheated. I still feel cheated. I went through -- and still sometimes do -- all of the stages of grief. The first couple of days, I frequently wondered ‘why?’. That was often mixed with anger and fear.”

Greencove: “Very afraid, but I am a person of faith and I leaned on God and my family.”

Anonymous: “It was unreal. I felt nothing but anxious to know what was next and what I needed to do. There was no need to get upset. It was time to get all of the information I could from the doctor and nurses. A lot of information and brochures were given to me, as well as graphs drawn by the doctor. I also started to research online, but stopped. I found that online searches will not make you feel good. Online gives more negative information than informative information.”

Almanza: “At first? Shocked! I couldn’t believe it was true. Then I went into fight mode. I wanted to get the ball rolling to see what I needed to do next to get this disease out of my body.”

Holbrook: “I was very scared and did not expect to receive this diagnosis because my doctors all led me to believe there was little chance that what they were seeing was malignant. But watching my mom go through her 12-year battle with breast cancer, I always thought it wasn’t if, but when, I would be diagnosed myself.”

Anything else you’d like to share or say?

Kelli F.: “It’s important for people to know: It’s not just about feeling for lumps. I had no palpable lump. It was visual -- a minor change that even my primary care doctor did not see at first. I want to remind people to be familiar with what their breasts look like. All of this is so important, especially for younger people like me who think age, health and time (not to say that I have less, but that I value more) are congruent.”

Almanza: “I truly believe early detection is key, so the more awareness we get out there, the better.”

Holbrook: “It’s so important for women to hear real-life stories. The most important thing that helped me through those first difficult weeks was when I was able to read about other women who had gone through the same experience, and know I was not alone.”

We’ve shared several of these features throughout October.

Thank you so much to our loyal readers, who trusted us with their answers and made all of this possible.