Cancer Timeline
06/12/2019 - 06/14/2019
Follow up NIH visits. Second stomach mapping with multiple biopsies procedure, and discussions about when to have total gastrectomy. Had close to 100 biopsies taken, all were negative for cancer despite having a positive biopsy during December 2018 visit. Total Gastrectomy planned for 9/12/19.
12/03/2018 & 12/04/2018
Attended intake appointments and initial stomach mapping with biopsies procedure at the National Institutes of Health (NIH) in Bethesda, MD. End of December 2018, I learned 1 of the 92 biopsies taken was positive for "poorly differentiated carcinoma with signet ring cell features." Stage 1 gastric cancer.
Cancer in Pictures
Breast Cancer At A Glance
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Final pathology diagnosis: Invasive Lobular Carcinoma- Pleomorphic Type
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Stage 3A
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Nottingham Grade 3
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Estrogen receptor negative (ER-), Progesterone receptor positive (PR+), Human epidermal growth factor receptor 2 negative (HER2-)
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1 sentinel lymph node positive for invasive cancer cells prior to chemotherapy treatment, confirmed by biopsy
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Enhanced MRI showed initial tumor size 6.7cm x 4.0cm x 3.6 cm (before treatment)- biopsy showed over 90% of the tumor was made up of active cancer cells
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Enhanced MRI showed post chemotherapy tumor size 1.8cm x 1.6cm x 0.8 cm (after treatment)- surgical pathology showed only 15% of tumor bed had active cancer cells
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2 sentinel lymph nodes removed during surgery, both negative for active cancer cells (neoadjuvant chemotherapy did it's job!)
Breast Cancer Tests/Procedures
CDH1 At A Glance
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No history of genetic testing in my family prior to my testing
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Recommended for genetic testing due to young age of breast cancer diagnosis (32 years old), young age of my mom's breast cancer (34 years old) and due to other family history of cancer
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Met with the genetic counselor, decided on a multi-gene panel test because of my sporadic family cancer history
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Learned I possessed a pathogenic variant in CDH1 in May, 2018. Told about my cancer risks for breast and gastric cancers at that time (couldn't believe it)
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My mom was tested with a multi-gene cancer panel test and tested negative for everything (weird-but awesome)
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My dad submitted for CDH1 testing, turns out he is positive for the same pathogenic variant as me despite no personal history of cancer
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I joined a clinical study at the National Institutes of Health (NIH) due to the rarity of this gene and finding no one who was knowledgable about it in my regular hospital system. I also wanted to contribute to the data out there for next generations of CDH1 mutants
CDH1
Tests/Procedures
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2/26/2018: Mammogram
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2/26/2018: Ultrasound
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2/26/2018: Ultrasound guided biopsy
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2/26/2018: Biopsy clip placed in breast
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3/7/2018: Breast MRI
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3/8/2018: PET scan
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3/9/2018: Lymph node biopsy
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3/9/2018: Biopsy clip placed in sentinel lymph node
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3/9/2018: Chemotherapy port placed
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3/12/2018: Start of IV neoadjuvant chemotherapy (AC+T)
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4/18/2018: Genetic testing (blood draw & meeting with genetic counselor)
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5/16/2018: Appointment with genetic counselor to review testing results. Learned I was positive for pathogenic CDH1 mutation
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7/31/2018: Breast MRI (post IV chemo)
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8/15/2018: Pre-op appointment
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8/31/2018: Bilateral mastectomy with immediate implant reconstruction and sentinel lymph node biopsy
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10/4/2018: Started adjuvant oral chemotherapy due to having active cancer cells remaining in the breast tumor following neoadjuvant chemotherapy
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11/14/2018: Started Lupron injections every 28 days (ovarian suppression) - ONGOING
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4/3/2019: Started radiation therapy
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6/14/19: Met with a world renowned breast health specialist at the NIH and was recommended to continue Lupron injections monthly, start an aromotase inhibitor (AI), and start Zometa injections every 6 months. Continue these treatments for at least 5-10 years depending on how they are tolerated
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6/20/19: Started intensive treatment for left arm lymphedema exacerbated by radiation treatment and airplane flights
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6/26/2019: Started aromotase inhibitor (AI)- Anastrozole (stopped shortly after due to negative side effects)
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8/1/2019: Started Zometa infusions (every 6 months) to reduce the amount of calcium released from the bones into the blood stream. Intended to slow bone loss related to ongoing hormone therapy, and has been shown to prevent breast cancer recurrences to the bones - ONGOING
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4/18/2018: Genetic testing (blood draw & meeting with genetic counselor)
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5/16/2018: Appointment with genetic counselor to review testing results. Learned I was positive for pathogenic CDH1 mutation
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12/3/2018-12/4/2018: Clinical study tests and EGD, stomach mapping, and multiple stomach biopsies procedure at the National Institutes of Health (NIH)
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End of December 2018: Learned 1 of the 92 stomach biopsies taken during the stomach mapping procedure was positive for poorly differentiated carcinoma with signet ring cell features (stage 1 diffuse gastric cancer)
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6/12/2019-6/14/2019: 6 month follow up clinical study tests and EGD, stomach mapping, and multiple stomach biopsies procedure at the NIH
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End of June 2019: Learned all of the almost 100 stomach biopsies taken were negative for cancer cells (sneaky cancer, we know you are in there, but where?!)
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9/12/2019: Underwent total gastrectomy surgery at the NIH
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10/11/2019: 1-month post op follow up at the NIH
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12/13/2019: 3-month post op follow up at the NIH
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3/13/2020: 6-month post op follow up at the NIH. CANCELLED last minute due to COVID-19.
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8/28/2020: 1-year post op follow up scheduled at the NIH.
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12/21/2020: Diagnosed with gallstones after multiple gallbladder attacks and elevated liver enzymes.
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1/28/2021: Laparoscopic gallbladder removal surgery at the NIH.
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11/16/2021: Virtual telehealth visit with Dr. Davis and dietician. Had labs and DEXA bone density scan completed at home, and reviewed results with NIH staff.
My Genetic Testing Results
