The purpose of this site is to provide not only my personal story but also to help others navigate the process when diagnosed with breast cancer, to answer questions about what one can expect to experience and, eventually, to provide links to other informational and product sites.
My Cancer Story
“You have cancer”
My husband had been nagging me for a couple of months to get my annual mammogram done and I had been putting it off because I was in a new job and had a lot to do to get up to speed. I had always been pretty good about going every year since I was 35 because my mother had breast cancer twice but this year just seemed to get away from me. Finally, I obliged. I went for my mammogram on Wednesday, August 22, 2012. That was the day my life changed.
The following day, I got a phone call from the imaging center asking me to return on Friday, August 24th because they noticed something…they told me, “it could just be a shadow but we would like you to come back in.” I had never had that happen before but I didn’t want to think the worst.
So, that Friday, I went in for another mammogram and an ultrasound of my right breast. The fact they were doing another procedure (i.e. the ultrasound) made me a little nervous but I was trying in my mind to chalk it up to just being thorough. They asked me to wait for the doctor to take a look at the images. When the doctor finally came into the room where I was waiting, and he said, “My name is Dr. So-and-so and it looks like an early detected cancer. So, we’d like you to have a biopsy done.” I thought, how did he just go from “I’m Dr. So-and-so” to the word “cancer” in one very short sentence. He may deliver that message daily, but this is the first time I’ve ever heard it. Now I was scared. But at the same time, it could be nothing. Even if it was a tumor, it could be benign, right?
The following Wednesday, I went for the biopsy. From what they could tell, the mass was only about the size of a pea. They told me they should have the results of the biopsy by that Friday. Well the good news was that I didn’t have to wait too long to know the answer. The bad news was exactly that – bad news, it was cancer. I sat and cried but then had to pull myself together because I had my eight year old daughter to take care of and I certainly didn’t want her to see me crying. On top of that, how was I going to tell her that I had cancer?
I scheduled an appointment with a breast surgeon, a surgeon that was referred to me by my Ob/Gyn (whom I greatly respect). My husband and I met with her the following Wednesday, September 5th. She was young and new to the very well-regarded practice. She was obviously very smart but more so, she was nice, sympathetic and not at all condescending. Needless to say, I liked her immediately. She spent over an hour giving us a breast cancer 101 lesson and explaining my options. In that entire time, she never once looked at her watch or made us feel like we were taking up too much of her time….that was the sign of a doctor I wanted to help me through my ordeal.
We told her that we thought that the cancer may have been caused by years of infertility treatments, as I had read not long before that, that the hormones in those treatments can cause cancer (no one told me that at the time).
After some discussion, I decided that I was going to have a lumpectomy done – just remove that little pea-sized nuisance, have some radiation done afterward and move on with life.
The doctor explained that she would remove the mass plus a little extra around the mass to make sure there were no rogue cells left behind (this extra is referred to as the margin). Because of the location (provided in the biopsy report like a clock face – mine was at 11:00), she was going to go in through the top of my breast to remove the mass. In addition, she was going to insert a blue dye that would highlight the first few lymph nodes (located in my armpit) that cancer cells would have spread to if that had occurred (these are referred to as sentinel nodes) and she would remove them to see if the cancer had spread.
I would only have to take a day off from work for the surgery and then I could do radiation while I was working so this was going to be minimally invasive to my life. Excellent, there was a plan – I always like to have a plan. Surgery was scheduled for September 28th.
The Pathology of the Mass
I did fine with the surgery and within 2 weeks, I met with my breast surgeon again for a follow-up. She told me I was healing nicely and then shared the pathology report with me.
My pathology report provided a lot of relevant information about the tumor. It indicated the size of the mass and its general appearance. It also indicated that the margins were clear of cancer (that was good news). Also, the report indicated that the tumor was invasive ductal carcinoma, which means that the cancer began in the milk ducts but had spread into the surrounding normal tissue in the breast (this is the most common form of breast cancer). In my case, there was extensive intraductal carcinoma and was scored a grade 3 which meant that the cells were fast growing, not even fully formed before they were dividing, so, the cells did not look at all like normal cells (very bad news). Lastly, there was no spread to the lymph nodes (great news).
In my head, I was thinking what stage cancer is it? The tumor was invasive cancer measuring less than 2 centimeters, with no lymph nodes involved, so it was Stage 1.
I met for the first time with my oncologist on October 24th. Even though it was only Stage 1, my oncologist talked me into doing chemotherapy I asked her if I could wait a bit to start, say to the first of the year (which was only 2 months away). She vehemently told me it had to start right away – that the only way to ensure we kill the disease before it metastasizes was to start as soon as possible. She reminded me that I had an 8 year old daughter I needed to consider…as if I could forget. I reluctantly agreed to start right away. My first chemo treatment was November 8th.
I knew I couldn’t work while going through that (much too stressful) so I went on ST Disability.
The regimen I chose (I was given a choice between only two different regimens) was Taxotere and Cytoxan, intravenously, once every three weeks for four treatments. It was surreal the first time, not knowing what to expect exactly, but knowing you are allowing someone to pump toxins, poisons through your body to rid you of a disease. I didn’t seem to make sense. But I did it. My last chemo treatment was January 10th.
During one of the initial visits with the oncologist, she asked if I wanted to have a genetic test done to see if the cancer was caused by a genetic mutation. Given my mother’s 2 bouts with the disease and the fact I was only in my mid-forties, it was possible that a genetic mutation and not infertility treatments may have caused my cancer. I opted to do the testing.
The doctor was able to fast track the meeting with the genetic counselor (because, if at all possible, I wanted the expense to hit in 2012 since I had already maxed out on my out-of-pocket payments for insurance purposes) by including on the paperwork that the test was going to help me decide whether or not to have surgery. I met with the genetic counselor on October 31st.
During the session, the counselor mapped out my family going back to my grandparents on both sides, identifying those who had cancer and what type. After the mapping and a lengthy discussion about the genetic testing, I provided a blood sample. On November 30th, I found out that I did indeed have the BRCA2 genetic mutation.
Based on research I did, having this mutation carried with it a high likelihood of recurrence of breast cancer, as well as a higher than average probability of ovarian cancer. Within a week I decided that I was indeed going to have surgery done. I contacted my breast surgeon and explained the situation and that I wanted to have a double mastectomy done; she also recommended the cosmetic surgeon who would do my reconstruction. I contacted my Ob/Gyn and told her I wanted a complete hysterectomy – ovaries, tubes. uterus and cervix. She suggested doing all 3 at one time which I jumped at; one surgery = one time under anesthesia = one recovery. It was scheduled for February 7th, exactly 4 weeks following my last scheduled chemo treatment.
I couldn’t help but think that if my oncologist had not talked me into chemotherapy so quickly, I would have received this news about the genetic cause only a couple of weeks later and would have opted for the surgery to mitigate the risk rather than do chemotherapy. In hindsight, I am very angry about this, that I let her strong-arm me, but I try to tell myself that everything happens for a reason, not that that provides much comfort.
On February 7th, my husband and daughter dropped me off at the hospital at 5:00 am for my major surgery – a double mastectomy and a full hysterectomy. I was afraid but tried to keep a brave face for my daughter. I was in the operating room for almost 8 hours and then in the hospital for 3 nights. It was painful but at least I have peace of mind knowing I have mitigated the risk caused by the genetic mutation to the extent I possibly can. Because I had the mastectomy, there was nothing left to radiate so I did not have to go through radiation treatments.
The Road to Recovery
At the end of March 2013 I returned to work (telecommuting) and my hair was growing back – at that point it was about half an inch long. I have met with my surgeons and all has healed well.
I have decided not to take Tamoxifen or aromatase inhibitors. My naturopathic doctor has another approach which will be far easier on my body and all natural.
I changed oncologists. My new doctor is another female doctor in the same practice but she has a much warmer personality. I am going to have to have an ongoing relationship (for the next 10 years, at least) with this person so it had to be someone I like, respect and can trust. I think I have that now.
I have a new perspective on life. I try not to spend too much time at work and spend more time with my daughter and husband. I try to be optimistic. I try not to get mired in the minutia and focus on what is really important. Basically, I try to enjoy life more because it can be cut short so quickly.