Part 1, in case you missed it.
Finding out I had cancer was terrifying.
My thoughts went immediately to my kids. They are so young. My son had just turned 11, my middle daughter was 7 1/2, our youngest was 5, almost 6. How could I look at my kids and tell them I have cancer without scaring them? I didn't want them to see their strong, active, always on-the-go mom as sick and weak. Like a lot of families, mine doesn't run well without the mama running it. I had to focus on getting better for them and my husband.
When we got back from the OB/GYN, my mom was at our house watching the kids. She could tell by my tear-streaked face that it was cancer. She hugged me tight, I took her in our bedroom to tell her what I knew (not much). She said she would come to any appointments or watch the kids anytime and that she could completely clear her calendar to be as available for us as we needed. As she left, I told her to text me when she got home so I could call and tell my dad when she was there with him. My dad doesn’t always deal well with stress and has been battling his own serious health concerns, so I didn’t want him to be alone when I told him. My parents are strong Christians and so I knew I could count on them to begin praying immediately.
The nurse had given me a list of surgeons after the biopsy. One of the doctors on the list was familiar because I had had surgery with her about 12 1/2 years ago. I called her office to make an appointment as soon as we left the OB/GYN's office after officially being given the diagnosis. They got me in on Monday, January 6th at 9am.
Next I called my sister. She can be a tough one to reach. I called and she answered but asked if she could call me back in a couple minutes. Now, I know my sister and know that when she says that I won’t hear from her from months. I said, “that’s fine, but you actually need to call me back. This is important and urgent.” She said that she could talk now instead. Told her the news and she started crying and wanted to know what she could do to fix it. Obviously, nothing, so I told her I’d call her when I knew more or needed something. Next up was calling my brother and sister-in-law; my SIL wasn’t home, so I talked to my brother and asked him to tell his wife the news. My brother was awesome; he prayed with me immediately, but was very emotional. I’m close to both my siblings and these calls were terribly difficult to make.
My mom went with me to this first appointment. First I met the Nurse Practitioner, T1. She is the sweetest, gentlest person. She was so compassionate toward me and my mom; meeting her was a great comfort for my mom especially. Then came in Dr. R. She is a tiny, but powerful woman, an amazing surgeon and has the perfect bedside manner for me. She is very data driven, very evidence based. She had already looked at my radiology images, examined me, then did an additional ultrasound there in her office.
After that, we sat down in the conference room with her Nurse Navigator, T2. T2 was also incredibly compassionate and kind. She gave me a binder that the hospital gives to all newly diagnosed breast cancer patients. The binder contains information about the types of breast cancer, how they are graded and all the treatments for cancer: surgery, medical (chemotherapy & other drugs), radiation. It talks about reconstruction options and what to expect during each stage of the process. It had information about the Cancer Center at the hospital with all the resources they offer to patients and families (dietician, social worker, library, shuttle, support groups, educational seminars, etc.). It had information about integrative medicine; a section for me to keep my medical records; a spot for me to keep all the business cards from my care team. Later, my husband and I would say that if you're gonna get cancer, this is the type and now is the time - there are so many resources and so much money being thrown into researching and finding a cure for breast cancer. Hopefully one day soon there will be a cure for every woman who is diagnosed.
Finally Dr. R joined us again. She told me that we had caught it early. I had probably an early Stage I or Stage II Invasive Lobular Carcinoma. If the 2 spots were truly separate, than it would be Stage I. If they were really just one spot (they were connected), then because they were less than 5cm apart it would be Stage II. They didn't suspect any spread to my lymph nodes (good). I would need a Breast MRI to confirm what she was seeing on the other tests. If it all came back as suspected, she recommended a lumpectomy. She said that with the type of cancer I had, when the tumor is smaller than 5cm a lumpectomy is just as effective as a mastectomy. She also recommended I undergo genetic testing. And if I was considering any type of reconstruction on my breast (a lumpectomy would've left me very uneven) I should meet with a plastic surgeon. I also needed to go have some bloodwork done and a chest xray - I was sent immediately for those two after I left Dr. R's office.
The great part about having a Nurse Navigator is that she handles booking appointments and coordinating tests for me so I don't have to do it myself. T2 made me an appointment with Genetics for the next morning (January 7, 2020). I filled out their online survey/questionnaire (detailed family tree and history) before going. The appointment was pretty easy and I went alone. I met with a genetic counselor, K, a phlebotomist came in and drew a couple vials of blood and that was that. They would call me before running the tests to let me know how much it would cost. They would deal with checking with my insurance for me and if my insurance didn't cover it, they had various pricing models for help. It would take several weeks for results to come back.
Next up was meeting the Plastic Surgeon. My Surgical Oncologist, Dr. R, referred me to Dr. M. She has worked with him for years and thought I would like him. T2 made my appointment with Dr. M for Monday, January 13 at noon. My sister had been wanting to come to some appointments with me to help support me and so she joined me at the Plastic Surgeon. The nurse, D, met with me first. She took a few pictures of my chest, and explained the process of reconstruction to us. She showed us the different types of implants. I asked her about reconstruction using my own tissue (such as DIEP flap and others). She said Dr. M doesn't do those types of reconstruction, but they would be happy to refer me to another doctor so I could get all the information I needed to make the best choice for me. Then Dr. M came in - he's totally cool. He was very professional, had a compassionate bedside manner, took time to answer our questions. My sister had more questions than me, which is why you take a second set of ears to all these appointments. I think I was just in too much shock to really comprehend what was being said or to think of questions. I thought the Plastic Surgeon was a pretty low stakes appointment, but I was wrong.
Turns out, the Plastic Surgeon is extremely involved in my surgical care. I thought it was more like, he shows up at the end of the surgery and tosses in an implant. Um, no. Implants are the last step in this process and don't go in until after radiation is all done. He would place a tissue expander in my breast at the time of the first surgery; then I would need to go get it filled every week until it's the correct size. Then after all the cancer treatments are done, we do the reconstruction with the implant. Didn't see that coming and I think my poor, sweet sister was traumatized for life after that appointment. She tried really hard to be strong for me, but she called my mom after the appointment and cried.
T2 had gotten me an MRI appointment for noon on Friday, January 17th, but my surgeon, Dr. R, wanted it sooner - she didn't want to wait that long, so they were able to move me up to 8am Tuesday, January 14th. For that appointment, my mom came with me again (many of these hospital locations are women only, so my husband couldn't come to these appointments). I changed and the technician took me back. This was pretty easy. Lay on my stomach on a table with my boobs hanging down through a hole. Lay very still...do not move for 15-20 minutes. The machine whirred and clicked all around me while I prayed a Rosary. That was it. Results would be sent to the doctor right away.
Later that day at 3:16pm, Dr. R called me with results from the MRI. She said the 2 spots were connected; they were actually one large tumor that was 7cm across. There was no evidence of cancer in my right breast and no evidence of cancer in my lymph nodes. Because the tumor in my left breast was over 5cm, a lumpectomy was no longer an option. I would have to have a mastectomy. My choice was now to do a single or double mastectomy followed by radiation. Due to my age (44) and the cancer being invasive lobular, there was a high chance of the cancer returning in my right breast in the future, so a double mastectomy could be medically justified, but not required.
I chose a double mastectomy with reconstruction to start immediately. I confirmed my decision with my husband and called the surgical coordinator at Dr. R’s office to get scheduled. She worked with Dr. M and the hospital to coordinate everyone’s schedule and get me scheduled for surgery on January 30.
Keep reading Part 3
