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  • Writer's pictureKate

Let's recap shall we?

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I have been writing multiple blog posts, creating social media posts, and editing my website these past several days since returning from my most recent east coast NIH visit. I have a lot of ideas and things I want to write about, but am waiting for the right moment as some are pretty sensitive topics. For now, they will remain in my "drafts" section until I feel it is the right time to post them for all to see. Thought I should write a quick blurb (which is much longer than anticipated....whoops) and let you all know how everything went out east (Bethesda, MD), and update you about what is to come. So, here goes...

The trip to the National Institutes of Health (NIH) last week was pretty much the same as the visit in December, 2018, with one major difference. This time, my parents were along for the ride. I'm not sure I have shared publicly, but my dad is also positive for the CDH1 gene mutation (yes, he gave me permission to share). He has also joined the NIH study with me, and last week's visit was his first set of appointments. The trip was quick, a bit stressful, and there was a lot packed in to our three day visit. The first day was a full day of tests, including admissions appointments, bloodwork (9 large vials!), urinalysis, chest x-ray, EKG, pre-anesthesia appointment, and meeting with the doctor who would be performing the Esophagogastroduodenoscopy (EGD) with stomach mapping procedure the following day. We also received our long-term visitors badges for the NIH which would allow us to get through security faster/easier the remainder of our visit and future visits (think TSA precheck).

The second day, we arrived to the NIH bright and early and checked in to the surgery floor. My dad went first for his procedure, and then I was prepped and ready when he came out and in I went. The surgery teams there are amazing, and took great care of us. By mid morning, we were headed back to the hotel to rest.

The third day, I met with a world renowned breast health specialist for a check up and second opinion of sorts. I was referred to him by my team of doctors on the CDH1 study last December, and he has been collaborating with me and my primary oncologist, reviewing my case, and helping to make clinical decisions because of my unique set of circumstances. He provided a full work up, and was obviously very knowledgable about my case. He answered all of our questions, and made the following recommendations for my ongoing breast cancer treatment: (Yes, I am done with "active" treatments, as I stated in previous posts, but with hormone receptor positive breast cancers, research shows that ongoing endocrine therapy treatments are beneficial to long term success).

  • Continue with monthly Lupron injections for at least 5 years-this is an ovarian suppression drug that basically puts me into medically induced menopause. I have been receiving monthly injections since 11/2018, and have been tolerating them as well as can be expected.

  • Add an aromotase inhibitor, which is used to block the enzyme aromotase which converts androgens to estrogen in the body. This means less estrogen is circulating through the body to stimulate estrogen receptor (ER) positive cancers. This is where it gets complicated. According to the tests performed on my initial tumor, my tumor was technically ER negative, but progesterone receptor positive. This is an extremely rare occurrence, and because of the rarity, it has been determined that my tumor could actually have been weakly ER positive and just didn't meet the arbitrary positive threshold of the initial test (we tried to get the test run again, and/or have additional testing, but insurance wouldn't pay and I couldn't justify spending thousands out of pocket). The doctor at the NIH says the way my tumor responded to chemotherapy was more like that of an ER positive tumor, so we are going to act as if it was in the hopes of increasing my survival odds. Depending on how I tolerate this new drug, the goal is to take it for at least 5 years along with the Lupron.

  • Add Zometa infusions every 6 months. Because I am in menopause at such a young age, my bone health has already started to be impacted. I had a bone scan which showed slight osteopenia in the lower vertebrae in my back. Without hormones circulating through my body, my chances of developing osteoporosis are high. Zometa infusions slow down bone loss, prevent fractures, and have recently been shown to prevent bone metastasis in breast cancer patients. (Breast cancer likes to spread to the bones if it is going to spread throughout the body, so this drug helps to reduce that likelihood). I'll take any protective factors I can get at this point!

After meeting with the breast health doc, my dad and I met with the CDH1 study team. We talked with the genetic counselors, the dietician, the nurse practitioner, the nurse coordinator, and the surgeon who leads the study and performs all the gastrectomy surgeries. We asked a lot of questions and received a lot of information in return. Since my previous EGD showed early stage cancer cells in my stomach, I have already decided to follow the clinical recommendations to have a total gastrectomy regardless of what this next EGD shows. For my dad, it will be a wait and see in regards to what his results show. It is also a very personal decision, as I can attest to. Results (pathology) is expected in about 2-3 weeks from the date of the procedure. The pathologist has to carefully review close to 100 biopsies for both my dad and I, then the head surgeon reviews them a second it takes awhile.


I am thinking I will have my total gastrectomy sometime in the fall, maybe September? We will see how things go. Also, yikes! I am scared about this surgery, but I just can't keep worrying about what is going on in my stomach. It is really messing with my head knowing the cancer is in there. Being a non-anxious person, it is making me anxious! Every little pain I have, or gurgle I hear, or bloating I feel, my mind immediately goes to, "it's the cancer, it is growing, it is spreading, it is going to be too late by the time I have surgery, I am going to survive breast cancer only to be taken out by sneaky gastric cancer, etc., etc., etc." Not cool brain, not cool!

That's all for now. Talk at you all soon!


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