Six Stars Tattoo for Six Years Living with Metastatic Breast Cancer
On July 10, 2019 I found a lump in my right breast. Seventeen days later, July 24, 2019, I was told that I had breast cancer that had already spread to my bones, liver and adrenal gland. This came after 9 years of annual mammograms that were “not positive for cancer.” My most recent was 9 months before I found the lump. In 2020, the breast cancer spread to my brain.
I have received radiation for the tumor on my adrenal gland and one in my shoulder bone. I received five rounds of SRS (radiation) to my brain. I have infusion treatments every three weeks and will for the remainder of my life. I have had three rounds of gamma knife to brain tumors and recently had laser ablation of the newest brain tumor – my 12th one.
Since my diagnosis I have learned that I have extremely dense breast tissue that makes it much harder to see breast cancer on a mammogram AND is a significant risk factor for developing breast cancer. A person with dense breast tissue has a 60% higher risk for developing breast cancer than a person without dense breast tissue.. How I wish I had known this before my diagnosis. I had never heard of breast density and didn’t know I should have been receiving additional screenings each year in addition to my mammogram.
Did you know that there are scarce resources dedicated to researching Metastatic Breast Cancer?
I am raising money for METAvivor because 100% of their funds go to researching Metastatic Breast Cancer – the only breast cancer that kills. I need research to find new treatments to extend my life.
Five years ago today on 7/17/2019 I had a diagnostic mammogram and an ultrasound of my right breast. This was ordered after I found a lump on 7/10/2019 and my primary care doctor confirmed my findings on 7/12/2019.
Make the effort to view the actual reports from the tests you have.
Many health care facilities will send you a letter or you may receive a phone call from your doctor’s office telling you that your tests were “just fine.” This is what we all want to hear so we typically do not take the time to go online to our medical charts to view the actual reported results. Review the actual report with your doctor and ask questions if you do not understand what it says. You must be your own heath advocate.
You must know your breast density.
On 10/11/2018 I had an annual mammogram at my local hospital. The radiology report indicates that I had multiple prior studies dating back to 8/13/2009.
FINDINGS: A moderate to large amount of heterogeneously dense tissue is again detected bilaterally which limits the sensitivity of the exam. There were no speculated masses. No suspicious microcalcifications. No evidence of architectural distortion. A few coarse calcifications are noted bilaterally. There were no significant changes.
IMPRESSION: No mammography evidence of malignancy. Recommended routine follow up. BIRADS Category II – Benign Findings.
Mammography reports were required to indicate breast density beginning 1/1/2019 – –horribly bad timing for me. This report mentions the breast density casually but did not assign a level to the density or indicate what should be done depending on the level of density. There is no way to know for sure, but my oncologist believes my cancer began at least as far back as 2017 given how widely it had spread when it was discovered. I was getting annual mammograms, but my breast tissue was far too dense for cancer to be detected on a mammogram. You must be your own health advocate.
You must know what to do if you have dense breast tissue.
The radiology report from my diagnostic mammogram showed “a vague density at about the 1 o’clock position.” This report, though, finally assigned a level to my breast density: “d – The breasts are extremely dense, which lowers the sensitivity of mammography.” BIRADS Category IV – Suspicious Abnormality.
The ultrasound report from that day found “a lobulated mass at the 1 o’clock position” that measures 2.4 cm in greatest diameter.
Two weeks later a breast MRI, the best scan available for detecting breast cancer, showed the reality: A 3.5 cm tumor in my right breast that had tentacles like a spider that reached clear through my right breast. A diagnostic mammogram only showed “a vague density.”
If your mammogram report indicates that you have heterogeneously dense or extremely dense breast tissue, you need further screening. A study from Myriad Genetics shows that 44% of women do not understand breast density and 63% of women do not know there is a connection between breast density and cancer risk. Until August 2019 I did not understand breast density and did not know there was a connection between breast density and cancer risk. Now I have Metatstic Breast Cancer (Stage IV) that has spread to my bones, liver, adrenal gland and brain. Breast cancer in early stages is treatable. My cancer is terminal. You must be your own heath advocate.
I spent some time being horribly angry and feeling betrayed by the health care system. I did everything I knew to do at the time, which was annual mammograms. The only way I can see my way through the anger is to passionately advocate for increased awareness of breast density and the increased risk of cancer associated with it AND to passionately advocate for more research to find a cure for Metastatic Breast Cancer, the only kind of breast cancer that kills and the cancer that kills 114 people every single day.
I am an ambassador for 2 organizations: My Density Matters and LightUpMBC. Go to https://mydensitymatters.org to learn about breast density and the screening necessary. Please consider donating to my fundraising page for LightUpMBC: https://donate.metavivor.org/fundraiser/5554408. All proceeds go to funding MBC research grants through Metavivor.
I am not in control. 