Dec 31, 2017 Latest post:
May 11, 2019
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My story started in April when I decided to have imaging due to a random pain that I had been having in my abdomen area. An abdominal CT scan was performed and a nodule was noted in the lower lobe of my right lung. The radiologist recommended additional imaging if not previously performed. The chest CT scan confirmed the presence of a 2.3cm x 1.4cm nodule that was "suspicious of primary pulmonary malignancy." A PET scan was performed and the nodule lit up, which is also suspicious for cancer. The next step was a bronchoscopy which was non-diagnostic. It didn't provide any additional information. I had a surgical consult to discuss options followed by a second opinion visit with a surgeon at a different hospital. The second opinion was to get more information before proceeding with surgery - second opinion on the pathology, a repeat CT scan, and if necessary, a repeat bronchoscopy. My risk of cancer was low in his opinion given my age and the fact that I'm a non-smoker. Everyone agreed that if this was cancer that it was slow growing and had been caught early. Unfortunately, they were wrong.
The repeat CT scan showed no significant changes and the repeat bronschoscopy showed a neuroendocrine tumor, likely an atypical carcinoid. An atypical carcinoid is cancer, but a slow growing one.
I had surgery on 11/2 and the lower lobe of my right lung was removed. I spent a week in the hospital. I had a visit scheduled with an oncologist the week of Thanksgiving and I expected the pathology to confirm the diagnosis of an atypical carcinoid. We were going to discuss the plan for imaging to evaluate for recurrences, but it was going to be over for now. Except it wasn't.
The pathology came back as a large cell neuroendocrine carcinoma and it was stage 3A because of lymph node involvement. The dx was confirmed by Sloan Kettering. So I would need chemo and radiation to prevent recurrences. We had a plan - I was going to start chemo on 12/27. I had a PET scan and MRI last week. The PET scan was normal, but the MRI was not. Multiple brain metastases were identified. It's now stage 4. I started whole brain radiation on Tuesday. 15 days of radiation, then chemo to follow.
So that's the current situation. I currently feel well - no current pain from my surgery and no current symptoms from either the metastases or the treatment. Side effects from the treatment may not appear for 2-3 weeks.
I'm grateful that I currently feel well physically. I'm grateful for everyone's support and prayers. I appreciate everyone's texts and messages, even if I don't respond to them.
I'm taking it one day at a time. I'm praying for a miracle.