My Breast Cancer Journey
Being diagnosed with invasive lobular breast cancer once rocks your world in a way that is hard to imagine. But making it through that then finding another lump just a year and a half later in the other breast that is yet again invasive breast cancer… this time they ductal variety… it is enough to make you question everything. The only sense I can make of this second diagnosis is that I am supposed to share my story with the world. God has filled me with a sense of urgency that I MUST warn women and help others find breast cancer before it spreads. What you are about to read and watch is my personal breast cancer timeline and journey.
Through sharing my story, I pray that you have three primary take aways…
#1. You have to be your own health advocate. BOTH times, I found the tumors in my breast though self breast exams and pushed to have them biopsied after mammograms and ultrasounds.
#2. Self breast exams in addition to diagnostic tools like Mammograms HAVE to be a regular part of your life, especially if you have a family history &/or dense breast tissue. For me personally with extremely dense breast tissue, mammograms where white outs which means that it was impossible to see any abnormalities with them. Following mammograms up immediately with ultrasound was the only way to visualize the lumps that I saw and it took a biopsy to appropriately classify the lumps and cancerous tumors.
#3. Breast cancer is a very treatable disease. Finding it early makes a HUGE difference in the outcome. DO NOT PUT OFF ROUTINE TESTING. 5 year survival rates for breast cancer that has not spread to the lymph nodes is 98%.
I will start at the beginning…
My initial breast cancer diagnosis and the days immediately following.
November 17, 2020 – After a year and a half of following a palpable lump in my left breast with mammograms and ultrasounds, I pushed to have the small lump that I could feel biopsied. These videos are the first ones I ever did and I was not strong enough to share it back then or continue them through the whole process. You will hear about my raw, emotional experience being told that I had breast cancer and my initial reactions.
How do you tell your kids that you have cancer?
In Nov of 2020, I had to tell my son along with my closest family and friends that I had just been diagnosed with breast cancer. Here is how I personally did it through Covid when I was not actually able to talk to everyone in person.
Imaging beyond mammograms | Breast MRI & Genetic testing for breast cancer | BRCA testing
The next step after my initial biopsy results was completing a breast MRI to more fully image the cancer and to see if there were other spots of concern. I did end up having a second 5 cm area that was concerning and I was immediately sent for a second biopsy. Luckily that ended up being a large, fluid filled cyst… benign. It was determined that we were indeed just dealing with one tumor.
I was also sent for genetic testing to see if I carry the BRCA I or BRCA 2 genes. These genes most commonly affected in hereditary breast and ovarian cancer. Less than 10% of all breast cancers result from inherited mutations in the BRCA1 and BRCA2 genes. That is right… less than 10%! I am BRCA negative and have very limited family history. While we may never know the root cause of my breast cancers, it does not appear to be related to those genes.
Lumpectomy with Radiation on my Right Breast
While I did not video during the time of my surgery, I choose to have a lumpectomy with sentinol node biopsy, followed by radiation to excise the invasive lobular carcinoma and to irradiate any cells that might have been missed in surgery.
With my stage one tumor being 1.6 cm and lymph node negative, along with an Oncotype DX score of 16, it was not recommended that I have chemotherapy. Recovery from my surgery took about 2-3 weeks during which time I did a lot of resting but was still able to work through email. After this, I began radiation therapy.
Radiation therapy took 1 month in total and I visited the hospital Monday – Friday each day for the 30-45 min sessions. The radiation therapy itself only takes about 10-15 mins. 16 sessions were for whole breast radiation, with an additional 4 sessions specifically targeted to the area where my invasive cancer had occurred. The sessions are totally pain free. That said, there are side effects from radiation therapy. I experience short term side effects of fatigue, nausea, reddening of the skin / burns, some modest blistering and heat. Those subsided within a month or so after my treatment.
Hormone Therapy with Tamoxifen & Anastrozole for Breast Cancer
When you are diagnosed with hormone positive breast cancer, that means that the tumor cells respond and grow under the influence of estrogen, progesterone, or both. My initial lobular carcinoma was estrogen and progesterone positive. While the tumor was removed and there were no obvious signs of cancer spread through my lymph nodes, there is always the possibility that microscope clusters or individual cells could have escaped to other areas in my body.
When those cells do escape they tend to head to areas like the bones or brain and begin setting up shop. This is called metastatic breast cancer. The interesting thing is that those cells are still breast cells are heart and still respond to hormones. So, the standard treatment is to either block the estrogen receptors on breast cells through a medication called tamoxifen for pre-menopausal women or to decrease the amount of estrogen the body makes and helps to slow or reverse the growth of these breast cancers through aromatase inhibitors like anastrozole.
I started with Tamoxifen but had significant side effects that made it difficult for me to continue including severe headaches and mood changes, along with uterine changes and concerns. Since my surgery, I have officially entered menopause fairly early (47) and have been able to switch to anastrozole with very minimal side effect. For the last year or so, my estrogen and testosterone levels come in at zero. Good for avoiding breast cancer recurrence but I do struggle with the impact of having no hormones and not being able to utilize hormone replacement therapy.
Life after invasive breast cancer treatment – it’s a mind f**k
Following my initial diagnosis and treatment, life went back to normal… mostly. The dr visits went from weekly to every 6 months. I started a more intense monitoring schedule for my overall breast health with mammograms yearly alternating in with Breast MRI’s every 6 months.
The uneasiness that comes after being diagnosed with breast cancer is a challenge to live with. While recurrence remains rare, it is most likely to happen in the first 5 years and women that have had breast cancer before are at higher risk of having it again. This is always in the back of your mind. I continued with self breast exams every 2 weeks or so (month is recommended) and would occasionally find new lumps and bumps that scared the hell out of me. While breast conserving surgery for breast cancer is highly effective, it does not take into account the psychological impact that living with the breasts that had betrayed you has on your psyche.
Looking back, I wish I had gone forward with a double mastectomy to start for a number of reasons. But I will get into that more in part two… Invasive Breast Cancer – Take 2