Blog | Getting Diagnosed with Breast Cancer


MY STORY

GETTING DIAGNOSED WITH BREAST CANCER

Triumph over breast cancerI was diagnosed with breast cancer after a lumpectomy. I went in for my first mammogram and it showed an abnormality. After a biopsy I was diagnosed with Atypical Ductal Hyperplasia. From what I could understand, that meant that the breast tissue was rapidly dividing and was abnormal. But it is not cancer. They stressed this a lot to me. The surgeon described it like a corn field. He said that most women's breast tissue is like the Sahara Desert. But he said mine is like Iowa soil. What happens if you plant a corn kernel in both? The Iowa one will grow big and strong. He said to imagine that the corn kernel is cancer.

I was scared out of my wits. I could just imagine cancer growing and spreading. I talked to my doctor about it and she said it was very serious and I needed to take steps immediately to try to prevent cancer. I drastically changed my diet and started exercising every day. In the meantime, the surgeon wanted to do a lumpectomy to remove the area that showed up on the mammogram. After they got the lab results in, he called to tell me I already had cancer.

“Its just DCIS. This is not going to get you.” The surgeon kept saying that to me over and over again on the phone. I was hysterical. I couldn't speak. I handed the phone to my husband and ran to my bedroom. I sat on the edge of the bed, shaking, watching my husband talk to the surgeon on the phone. “He said it is going to be okay, it is Stage 0 cancer, it is not going to get you” my husband said in a calm tone, but I could see in his eyes how upset he was. It took days before I could discuss it without crying. My husband, Phil and I both poured over all the information we could find on DCIS and all breast cancer. Phil is quite the researcher. I don't know what I would have done without him reading and relating all the information to me. He researched mastectomy verses radiation therapy. He researched reconstructive surgery. He read all the statistics he could find about the chances of DCIS returning years later.

After reading and talking, and more reading and talking, I decided the best course for me was a mastectomy, as opposed to radiation therapy. I had too much family history of cancer to take any sort of chance. I just kept imagining that Iowa soil of breast tissue that I had. If cancer came back after radiation, would it grow so fast that I wouldn't catch it soon enough next time? Something amazing happened when I made the decision to have a bilateral mastectomy: peace. I was calm and in control now. Now I was making the decisions and I was deciding what was going to happen to me. Cancer takes that control away, and I was taking it back. I felt inner strength. I felt like I was more than strong enough to get through this. In fact, I made the choice to be a positive influence on others. I was going to find the positive in my story and run with it. More on that aspect of my story later though.

It has been a little over a month now since my mastectomy, and I feel great. I don't like the way my body looks now, I wont lie. But to be honest I was never proud of my body. But I am proud of my decisions and how I coped. I had the support of a wonderful husband. I had the support of a loving family. I had the support of friends, new and old, that were there just to hug me and say they were thinking of me.

So my advice to anyone about to start their breast cancer treatment? Reach out to others. Listen to their stories. Tell your story. Get involved. Stay busy. Read interesting books. Listen to upbeat music. Dance. Sing. Live.

Leslie Notarianni
Pink Pepper Co

11 comments

  • Brookshire McDonald

    I am 81 years old and am a two-time breast cancer survivor. In 2004 I was diagnosed with invasive ductal estrogen neg.,progesterone neg. HerNu 2+. I was told I could probably get by with a lumpectomy, and I told the doctor I didn’t want any getting by sh..I was denied a. double.
    In 2006 I was diagnosed with invasive ductal and DCIS, estrogen pos., progesterone pos., HerNu neg. I underwent a mastectomy each time.
    I had chemo the first time and an aromotase inhibitor five years the second time. They are calling mine two primary cancers.
    NOW my middle daughter is scheduled for a double mastectomy Oct. 2.
    Her biopsy showed invasive Lobular cancer!
    I looked on line for mastectomy pajamas and found the shirt. She likes short bottoms. I love the drain pockets because I poked a hole in my drain line, had to call the doctor at 10 PM and was told to use duct tape!,

  • CIndy

    Taking care of yourself above others is difficult, especially when your parents live with you and have their own medical issues but when my mom received her diagnosis of multiple invasive cancers across both breasts, I knew I needed to make time for a mammogram. Both self-exams and mammograms have always been difficult for me because of my “dense” breast tissue and when I received the call for additional imaging, I just assumed it was this. I couldn’t believe when they said I needed a biopsy, 2 months after my moms! Here are doctors telling me what to expect and all I could think was, I just went through this with mom. This is crazy!

    During the mammo guided biopsy and while waiting for results, everyone kept saying that they have biopsies every year and it’s nothing but the longer I waited the more I began to think something was wrong. I finally received my results and although they caught it earlier than my mom, I too have cancer. Given my moms situation and hearing so many stories of recurring cancer, I have decided to have a bilateral mastectomy and avoid radiation. My first surgery is scheduled for next week to do some prep work before the major surgery; mom will have her bilateral mastectomy in January and I’ll have mine in February. Mother and daughter fighting breast cancer at the same time is just so unbelievable.

    I found your site while looking for recovery guidance and my husband (who has been so supportive through this) ordered the pillow and shirts to help with my recoveries. I don’t know what to expect in the short and long term but am trying to be positive. My cancer won’t require chemo unless they find something more during surgery, they caught it early, and I have a great support system. All of that being said, I’m nervous, scared and my emotions keep running crazy.

  • Katrina Tyler

    I was diagnosed with Estrogen Receptor Cancer in June. I had a double mastectomy is August & my Flap Reconstruction is October 28th.

    I’m blessed that I do not have to have chemo, radiation or the cancer pill.

    My father had heart mitral valve surgery years ago & when he went home, he was given a heart shaped pillow to help him ride in the car & have his chest protected from the seat belt.

    I told my surgeon this and asked my surgeon if I would get a pillow to help me while I’m in the car. A blank came over her face.

    I used a bed pillow at first then have tried sofa pillows which work, but are bulky.

    So I started looking on line and found your pillow. I had seen it before my surgery and SO wish I had ordered it then.

    On Amazon, they have heart shaped pillow, but knowing what I know now, the pillow you make is far superior because it covers under the arms also. I had two lymph nodes removed so that will be a lot more comfortable for that area also!

    I would suggest trying to get in with Susan G Komen, Breast Cancer detection facilities, Breast Cancer Plastic Surgeons.

    I sincerely hope you can get your product more widely known. If I can help in any way, please email me. I will definitely show it to my Plastic Surgeon and my local Susan G Komen organization

  • KRISTI MCGINN

    My husband found my lump the day before Christmas Eve 2016. I didn’t get into to see my Dr. until the following Thursday. My Dr. ordered an unltra sound and Mammogram right away. I had to wait for the biopsy because New Year’s was that weekend and Pathology didn’t want me to wait that long to get the results back. I went in Jan. 3rd 2017 for a biopsy and was diagnosed with IDC (invasive ductal carcinoma) on Jan. 4th. I was 34 and have no history of breast cancer in my family. I had HER2+ and hormone negative. I had chemo first and then surgery (double mastectomy with reconstruction). I was googling mastectomy pillows and your site came up. I ordered the mastectomy pillow and loved it.

  • DONNA HARTLINE

    Went in May 6, double mastectomy. Surgery was 2+ hours, recovery was 4+ hours! After my daughter did research found out I was having a severe allergic reaction to pain meds! I’m home now recouping with a fabulous pillow and shirt that is super comfy. Prayers to all who travel this journey!

  • Donna

    Found a knot knew it was cancer. I’m the 4th generation victim. I say victim because cancer victimizes you! I am stage 2 Triple negative 3cm. I have chosen DBL mastectomy which is scheduled May 6, 2019! I just called surgeon May 1st! Will tell story later I take care of my semi invalid 83 yo mom!

  • Stefanie Bowen

    After a routine mammogram, I was diagnosed with DCIS in my left breast. Hats off to my amazing radiologist for catching it because the area was only 3mm in size. Within 3 weeks of my diagnosis, I met with my surgeon (twice), my plastic surgeon, the oncologist, the radiologist and a genetic specialist. I was waiting to tell my boys until after college midterms so I used my time to research. No one knew my situation, but my husband and myself. Like many of you my mother’s side of the family is riddled with different diagnosis. I lost one of my sister’s to colon cancer when she was only 34! The DCIS diagnosis is confusing because my doctors kept saying “it’s cancer, not cancer”. I was getting so pissed off (sorry for the honest language) because my choices did not feel like “not cancer”. I finally looked at the Oncology Radiologist after hearing this comment for the 20th time and said …“if my children are filling out a health form what do they check for mother’s health? He responded, they check cancer”. I said, “ok, so I have cancer, let’s move on”. I understood my diagnosis, I was just trying to make a decision on how to proceed. I live in a very small community (less than 60,000 people) but we are blessed to have a world renown Genetic Center in our community. My genetic testing came back with a marker for the ATM gene. The irony is that the genetic marker came from my father’s side NOT my mother’s side. My father’s family really has no occurrence of cancer. This gene is not as well known, but it did increase my chances for recurrence. Long story short I decided to have a bi-lateral mastectomy with immediate reconstruction. I felt at peace once I made my decision. I am almost 4 weeks post surgery and I would beat down anyone who tried to take my pillow away. I just ordered one for a friend who is having a similar surgery. Love to all!!

  • Sue Smith

    I discovered a sizable lump in late January 2017 in my right breast. In Feburary I was diagnosed with a high grade, triple negative, invasive ductal carcinoma. I completed six months of chemo in September to which I had an excellent response. I have decided to have a bilateral mastectomy with reconstruction which is scheduled for November 9, 2017. After six months of chemo, I wasn’t enamored with the thought of six weeks of radiation! Because my cancer is an aggressive one, I am at peace with my decision and feel I have done everything I can to minimize the chance of recurrence.

    Thanks for sharing your story!

  • KIm

    I had dcis stage 2 double masectomy on dec 6 I was so scared I ordered everything up front to be prepared and it helped I am waiting for reconstruction after expanders reach their level some days I cry all day other days I’m fine I’m not driving yet or working yet but moving forward

  • Shannon Beasley

    I have been diagnosed with invasive ductal carcinoma grade 1 in one breast. I am having a bilateral mastectomy with reconstruction on January 10th, 2017.
    I went to a pre op/post op class offered by my hospital and they referred me to your site. Your mastectomy shirt will give me added comfort after the surgery.
    Thank you for all of your insight and advice.

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