On July 2, 2018, I found a lump in my right breast. After consulting with my gynecologist, I was sent for a mammogram and ultrasound. The lump was confirmed and I saw a surgeon. Surgery was scheduled for August 3rd. The lump was removed and sent for biopsy. The results came back that the lump was a benign tumor, which was good news, but they also found something lobular carcinoma in situ, which is a risk factor for cancer.
In order to be proactive, my doctor sent me for an MRI of both breasts on August 24th. This showed a mass in the right breast. A subsequent ultrasound on August 31st showed two areas of concern. I went for a biopsy on September 18th in which three samples were taken. The results came back on September 21st. I was diagnosed with lobular carcinoma breast cancer.
I met with the oncologist on September 27th, and she had me go for a whole body bone scan on October 5th and CT scans on October 10th. The news was good. There is no evidence of metastatic disease so the cancer has not spread.
Appointments with the oncologist and the surgeon followed. While we were with the oncologist, we discussed possible treatment options. She doesn’t want to stage the cancer until it is removed by the surgeon — right breast mastectomy. Once it is staged, we will determine the final treatment plan. However, she did mention that due to the size of the tumor and because it is an invasive cancer, I will probably have chemo, radiation and anti-hormone treatment. She mentioned that the chance I will get new cancer in the left breast is 1% per year and increases at that percentage, so 5% after 5 years, 10% after 10 years, etc. The chance of the cancer recurring on other parts of the body (soft tissues) is 5-6%.
It was a lot to think about and very overwhelming. After waiting anxiously for the doctors to coordinate their schedules, I finally got the call…my mastectomy was scheduled for Tuesday, November 13th, 2018. The general surgeon will remove my right breast and the plastic surgeon will place an expander that will hold the space in my breast until I can have breast reconstruction.
Everything went very smoothly with the surgery. I stayed in the hospital overnight and was discharged the next day. When the pathology report came back, the “large” tumor was actually 22 small tumors – invasive lobular carcinoma. The lymph nodes came back negative for cancer. When I had my post-op appointment with the plastic surgeon, he noticed that part of the incision wasn’t healing well, so I had to go in for a procedure to remove some of the tissue. The procedure with the plastic surgeon went very well. The doctor removed the bad tissue and stitched up the good tissue. Now I just had some more healing to do. I also have to have the air removed from the expander and have it replaced with saline, which will happen over the next few appointments with him.
Since the surgery, my right arm had also been very sore. I knew that since the surgeon removed two lymph nodes, that there was a possibility that I could develop lymphedema. I went to the Occupational Therapist and the good news is that I do not have lymphedema. The pain was caused by scar tissue that traveled down the arm. I did physical therapy and home exercises for four weeks to get it to loosen up so that my arm doesn’t hurt so much when I stretch it.
I saw the oncologist on December 21st and learned that my cancer is Stage IB, ER and PR positive and HER2 negative. She sent the tumor for a special test called an Oncotype DX to help determine if I need chemo.
While waiting for the results of that test, I saw a radiation oncologist to determine if I needed radiation. When I met with the radiation oncologist, it was not a clear-cut decision whether or not I needed radiation. She did more research into the size of my tumor, etc. and determined that there is no indication for it because the tumors were 1.3 cm or less, had clear boundaries and no lymph node involvement.
I saw my oncologist on January 11th and she told me that I do not need chemo. My recurrence score from the Oncotype DX test was a 7 and chemotherapy benefit score <1%. She stated that I have no evidence of disease. I will continue to take Tamoxifen for the next 10 years.
I saw the plastic surgeon on January 30. Since I didn’t need chemo or radiation, I was able to schedule my reconstruction of the right breast and reduction of the left breast. Although I had originally wanted to have the reconstruction done with my own tissue, the difference in surgery time and recovery time was a huge factor in my decision. I opted for the reconstruction to be done with an implant. My reconstruction/reduction surgery was scheduled for February 26th.
Everything went as planned. The plastic surgeon removed the expander in my right breast and replaced it with a silicone breast implant. He then reduced my left breast to make it more symmetrical with my right breast. The tissue that was removed from the left side was sent to the pathology lab.
I have been healing since the surgery. I will see my oncologist and have a mammogram in July and follow up with the plastic surgeon in August.
I saw my oncologist in July and was again told no evidence of disease. I had a mammogram and saw the surgeon and plastic surgeon in August. The mammogram just showed scar tissue from the breast reduction as expected. I will have another mammogram and MRI in February of 2020.
I was counting down the days until I could say I was a year in remission on November 13th, the anniversary of my mastectomy surgery when they removed the cancer. I was having headaches and noticed they were increasing in intensity and length, so I went to see a neurologist. She felt that I was having migraines, but given my history of breast cancer, ordered an MRI of my brain to rule out the breast cancer having spread to my brain.
I went for the MRI on October 30th. On the morning of October 31st, I received a call from my neurologist’s office asking me to come right in, so I did. My doctor told me that the MRI had shown an acoustic neuroma, a benign tumor in my brain. I was being referred to a neurosurgeon.
I called the neurosurgeon at the JFK Neuroscience Institute and he had an appointment for the next day, November 1st. While I was there they did the usual neurological testing and also explained more about the acoustic neuroma. It’s located on the eighth cranial nerve that runs from the ear to the brain and controls balance and hearing. I saw a 3D rendering of what this type of tumor looks like and how it can impact the brain.
The doctor explained that there is no way to know if any of the breast cancer cells traveled from my breast to the brain tumor. Because of this, he is being more aggressive. While he would generally watch a neuroma for 6 months, my next MRI and appointment are in five weeks. I will also undergo a hearing test to determine if the tumor is causing hearing loss.