Aches, Pains, Lumps, Bumps and the Phantom Itch

Two weeks ago, I woke up with a pain in between my chest.  I immediately started feeling around because pain is what led me to finding the breast cancer tumors on my right breast 5 years ago.  I was digging hard bringing bright red hues to my “foob” (fake boob). I kept telling myself I wasn’t going to find anything but the more and more I was digging I kept feeling shapes that I had never felt before.  I wasn’t too concerned until I felt this small pea sized lump. A wave of nervousness washed over me. I just kept rubbing and rubbing saying “no it’s nothing.” Again that’s what I said the first time. Then I thought well I’m digging pretty hard maybe it’s something else.  I had to remember that I no longer had breast tissue. Where would the tumor be growing from? Was it on my sternum? Or maybe it was scar tissue? No one really talks about scar tissue after surgery so I went back to what I knew and that was could it be the start of a tumor?

It was the day before my Windy City Live appearance that I felt the pain so I thought well maybe I’ll just talk to my oncologist about it.  The time flew by and there just wasn’t the right place and time so I didn’t say anything. I knew that I had my ovarian prevention appointment scheduled the next day so while I was at the appointment having my ultrasound and bloodwork, I would just have the doctor do an exam I told myself.  Well, I arrived at Northwestern Hospital only to find out my appointment was canceled. I knew I didn’t cancel it so I was so confused. I found out that they had canceled it on me because the doctor wasn’t in the office. They said they left a message and were waiting for me to call and reschedule.  I started to get anxious. How can they cancel an important appointment with a message? Someone should have called back to speak directly with me I told them. What would have happened if there was something going on and because of the canceled appointment, it was missed. Their scheduling team was very accommodating and helped me get another appointment, however now what was I going to do about this bump that I found.

I called my oncologist’s office before I left the hospital to see if I could get in to at least see a nurse.  I left a message for the nurses to call me back and heard back the next morning. I explained what I was feeling and she suggested I reach out to make an appointment with my plastic surgeon, Dr. Fine as she thought it sounded like scar tissue.  I was able to get into the office the following day. As always Dr. Fine gave me peace of mind and brought calm to my constant thoughts of a tumor coming back. He told me that it’s a percentage thing and while he couldn’t tell me 100% that it wasn’t anything he was 99% sure that what I was feeling wasn’t anything.  I then had to ask what it was then. He replied telling me it was scar tissue. I was to keep an eye on it and if it ever seemed to change shape or size or feel like it was attached to anything then i could worry more. I left his office feeling a little bit better but still unsure.

A week later, I finally had my ovarian prevention appointment as well as a gynecologist appointment where they both did an exam.  This is what brought me the most relief. I had three doctor’s do an exam and they all told me that it was scar tissue. I am definitely going to keep an eye on it though each and every day.

After my double mastectomy, I never received feeling back in my chest.  I knew that the nerves most likely wouldn't come back in my chest especially since my nipples were removed as well.  What I wasn’t told was about all the aches, pains, lumps, bumps and itches that I would feel daily and how much I would question what they were and where they came from every day.  Very often I feel some sort of ache, pain or discomfort under the implant on my right side, in the area I had my biopsies or at the surface of my thin chest (between my collar bone and top of implant). I have become even more of an over thinker and “worry wart” than I ever had before being diagnosed. My anxiety has defintley been getting the best of me over the past 4 years. I’ve always struggled with overthinking and anxiety, but now the thoughts that go through my head wondering if my breast cancer will return is sometimes unbearable.

Not only is it pains and lumps it’s also “phantom itches” as my sister and I like to call them.  My sister who had preventative surgery one day asked me if I ever felt these itches in my chest and had a hard time feeling relief.  I immediately confirmed that I received them too and I had no idea how to find them to itch and get rid of them. It’s so much more than just having a surgery and removing the cancer.  This procedure changes your body - shapes, feelings and pains. I wanted to share this because I don’t think this is focused on enough when preparing women for their surgery. We are told what is going to happen ahead of the surgery and right after, but just like survivorship we are not given the proper tools to know how to handle the aches, pains, lumps, bumps and itches that we will encounter a year or two down the road.