MY STORY
GETTING DIAGNOSED WITH BREAST CANCER
I 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
Easter weekend my husband had a slight heart attack and I felt a I thought a fibroid. I called my neighbors who are nurses. I’m new to this community so I didn’t have a clue. I went to a good general surgeon and thought oh he sounds like a solution after ultrasound and mammogram
My family insisted I get another opinion with UHealth in Plantation Fl.
Now waiting for surgery date for bilateral mastectomy! I’m scared out of my mind. I have invasive ductile carcinoma with ER positive and PR positive Her2 negative. My tumor is growing since it’s been 3 months trying to figure all this out! Learning from Utube and internet
Not fair!!
Oct 29th I went for routine mammogram. I was called by NP and told they found abnormal calcium spots and needed high resolution mammogram. After a Covid delay I did the high resolution mammogram on November 30th; and on December 8th was on a table with my breast in a hole having 3 biopsies done.
December 11th I got a call that I have cancer 2 types LCIS and PLCIS no other info like ER or PR or Her2 or anything other than non invasive. I She asked if I wanted to stay with outlet hospital or where I wanted to go to see oncologist and surgery. I said closer to home 2 hrs vs 5 1/2 hrs especially if I had to do chemo once a week. Long weekend filled with calls to family and close friends. Dec 14th a call from biopsy nurse who made it seem like no big deal. Stage 0 they call it, “we will schedule you with surgery”. I told her what NP said and she said I will talk to NP. NP called back and said “ ok, so not as bad as maybe we originally thought.” I explained that I still intended on seeing oncologist because I didn’t just want the no big deal surgery and end up doing that over and over again because of recurrence. After calling my GP of 33 years he agreed with biopsy nurse but also agreed that I should see oncologist.
I saw oncologist and did genetic component testing which I will get results to on Tuesday. We had a nice long discussion that I didn’t fully take in. The LCIS usually doesn’t require treatment but the PLCIS is rare and there is not much information or agreement on best coarse of treatment. What little I have found says it is an aggressive and can become invasive and after surgery has possibilities to be upgraded or changed to invasive. I told oncologist I’m not interested in radiation or tomoxifin and he sort of danced around not wanting to make the decision for me. I asked him to be honest and tell me if bilateral mastectomy was too radical to think about given the diagnosis and he said no I was right on In my thoughts. He also said prognosis was good. He asked if I wanted to speak to surgeon on staff or go elsewhere explaining that the surgeon on staff was more understanding and willing to do bilateral than the other hosp I would be sent to. I found out his wife is a survivor and in my own mind attributed his willingness to that. So I also see surgeon 1st time on Tuesday for consult for bilateral mastectomy.
What I don’t understand is do I have to wait for the mastectomy pathology to find out all the other ER, PR, Her2 many other alphabet letters of possible grading to the tumors I have? I see all that on others stories and I wonder if it’s just not something that occurs in this type or what’s going on, because I see it on the info I’ve read from NCS and ACA. Susan G Koman didn’t even have my type listed as far as any info on it.
So I’m trying my beat to be informed with as much info as I can be but not having much luck. I trust God and the peace He’s given me. It’s gonna be ok!
Hi Beautiful STRONG Women,
I was diagnosed this year July 2020 with DCIS. I chose to do a Bilateral mastectomy which would take place on the 15 Dec 2020.
The only other person in my family whom had Breast Cancer ( not sure what kind) was my Maternal Grandmother but she was diagnosed in her 60ies.
I’m just 45 and have to fight this, Thank you all for sharing your stories it really makes me feel more confident in my decision and this journey.
Lakita
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!,
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.