My Story of Breast Cancer

My Story

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

Preparing for a Mastectomy

My Journey through Breast Cancer

I am starting this blog a little late, it is a month now since my mastectomy. But I finally feel like I am able to start talking about it, and I feel like I now have some insights to start sharing. I also feel like I need to share this information, because no one told me any of this before my surgery.

I apologize ahead of time for my writing. I am not a writer at all. But I have learned a lot in a very short time. I want to do all I can to help others who are just starting their journey. The more I was educated about my situation, or what I can do for myself, the better I felt. I sincerely hope this blog will have a positive effect on others and help them prepare for their journey and feel more calm through the process.

Preparing for a Mastectomy

The most practical information I can offer

One of the most important pieces of advice I have in preparing for a mastectomy is to stay positive. One of the hardest aspects of this entire journey for me was to not worry. Worry does absolutely no good for you. Running every possible scenario of what can go wrong is exhausting. I was struggling with this and getting myself way to upset. If the surgery goes well, what a waste that is! I read a great book before my surgery, and it helped me so much to keep my thoughts positive, and therefore useful to me in planning and getting everything done that I needed to do. The book was written forever ago, but it has so many great points in it if you are a worrier.

Okay now to the nitty gritty. Be sure to PLAN AHEAD! Scroll down to the bottom of this post to see my checklist of items you should have on hand before your surgery. After a mastectomy your range of motion will be very limited and you will not be able use your arms very much. I was not even able to open my own pill cases for the first few days. Do your laundry, dishes, shopping and clean your house! Make sure you come home from the hospital to a clean nest. You will be camped out there for weeks. Also, ASK FOR HELP! Have friends and family ready to help you with whatever you will need, including meals. I had some frozen dinners stashed away just in case, and I used them all! You wont be able to lift anything for a while and even sitting up will be hard the first week or so. 

The Ride Home

I used a mastectomy pillow for my ride home. I was bandaged up but the surgery area was super sensitive  I also had the drain tubes that I didnt want the seatbelt to hit. So I used the pillow to protect me from the seatbelt. It worked perfectly. I used the pillow through my entire healing process. It gave underarm support which you will really want. I was surprised how much pain and discomfort I had in my underarms. I wasnt expecting that. The pillow was also nice because it made me feel more comfortable when someone came to visit, or when I went to doctor visits. I felt less conspicuous,  if you know what I mean.

If you are having surgery on just one side, either mastectomy or lumpectomy, you can also use an underarm pillow for just the one side. 

Drain Tubes

You will have drain tubes after your surgery. I have heard from most women that the drain tubes didn't not bother them, or hurt at all. I was very sensitive to them and they really bugged me. My surgeon said they will stay in anywhere from 2-3 weeks. They need a lot of attention. I had to clean the drain site twice a day with hydrogen peroxide and antibiotic cream. Because I had a hard time lifting my arms, it was hard for me to do that. So my husband got assigned that job. The drains have a bulb type ending on them that you will have to drain. They had me log the drainage, and call the nurse twice a week to give her the amounts. Once the drainage was way down, they know it is time to remove the tubes.

The drain tubes cannot just hang, they need to be pinned to something. For the shower, my surgeon gave me a ribbon that I could pin the drains to. Make sure you have something to use in the shower before your surgery. 

I also made myself a T-Shirt to wear that opened in the front and had internal pockets to hold the drains during the day, and when I slept. That helped a lot with the discomfort of the drains. The T-shirt held them in place and having them not move around while I slept helped me sleep longer. I made myself 2 of them thinking that was pretty generous. But it turns out it was a lot of work. I would wear one and wash one each day. But I didn't think about how that would mean doing laundry every day. It was a lot of laundry for my hubby to do!  So when I do my reconstruction surgery, I will have 4 of them for sure.

Sleeping After Surgery

 It is so important to get lots of rest after your surgery. But it was not possible for me to lay flat for the first few weeks after my surgery. I bought a wedge pillow off Amazon that I loved. It made sleeping possible for me. It was also much easier to sit up and lay down with the setup I show here. If you cant afford a wedge pillow, just make sure you have a lot of full pillows to prop you up at night. I also had a pillow under each arm to elevate my arms a bit while I slept. It was a much more comfortable experience with this setup. 

What To Wear

You will need tops that open in the front. I was not able to raise my arms for the first few weeks. My surgeon didn't even give me any exercises to do until I got my drain tubes removed. You will also want comfortable tops to wear, that you don't have to put over your head to get into. I used the Pink Pepper Co t-shirt through the entire healing process. I also wore very comfy cotton shorts and had a cosy blanket near me at all times. 

Items you will need right after your surgery

• Shower Lanyard
• Tops that open in the front
• Wedge Pillow (or extra pillows)
• Chest Pillow for the ride home

I hope this information helps you prepare for your mastectomy. I will be posting more information in the future!

      

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