**Just to clarify any confusion, any donations or "tributes" made using this Caringbridge website do NOT go directly to Esther, only to the Caringbridge website**
***To donate directly to Esther, visit the GoFundMe here*** https://www.gofundme.com/hope-for-esther
Dear Family and Friends,
On 27 September 2017, Esther started having abdominal pain lasting through the night. Initially, it seemed like really bad heartburn. After wincing in pain all night and not getting an ounce of sleep, Esther ended up in the emergency room. Esther received some pain medication, 2 CT scans and an Ultrasound. The result was that the tail of her pancreas looked swollen and she may have some concerning spots on her Liver. They directed us to follow up with her primary care manager.
The following week, she received a GI consult, resulting in an MRI. The day after the MRI (12 October 2017), we received a call from the GI doctor stating that Esther's pancreas presented a tumor and that her liver showed signs of malignant (cancerous) metastatic (cancer that has spread) disease. Additionally, it appeared to be a classic presentation of Adenocarcinoma of the Pancreas. This was extremely devastating news. This one sentence told us that she had Stage 4 rapid growing terminal cancer. A quick google search via American Cancer society said we statistically only had months left together, and only a 1% chance of 5 years together. We prayed. https://www.cancer.org/cancer/pancreatic-cancer/detection-diagnosis-staging/survival-rates.html
To read a little more about Esther's response to that news, please read the interview conducted by our good friend at: https://humansonthehomefront.com/2017/11/09/we-have-to-have-hope/
Without a biopsy of course, this couldn't be officially confirmed.
While we waited and prayed, they conducted a PET/CT and a MRI with Eovist. The PET scan is used to determine metabolic activity (what is burning sugar). This is commonly used with Cancer patients to determine the extent of cancer or if the cancer has come back. In our case, it was an informal means of verifying malignancy (cancer). It would show if anything abnormal was burning sugar around her pancreas and liver. To us, this confirmed Cancer in the pancreas and liver.
After doing some further research and praying, it appeared that 95% of time, when a tumor presents in this manner, it is in fact Adenocarcinoma. The other 5% of the time, it turns out being a neuroendocrine tumor. The major difference is that Stage 4 neuroendocrine without surgery would give us 16% for 5-year survival rate. This is what I prayed for. A little hope for some extra time.
We poured over the statistics and the research as I taught myself how to read CT and MRI scans. In addition to the PET/CT and MRI with Eovist, Esther also had another CT with contrast and an ultrasound of the liver. They were trying to see if they could conduct a needle biopsy of a liver spot. Treatment options relied on a pathology report via biopsy to see exactly what we were dealing with.
As we waited for scans and a plan to get the biopsy, we were told that her tumor is not operable due to adenocarcinoma metastasis to the liver (already stage 4/ spread to the liver). We were anxious and we were mentally preparing for a aggressive approach with heavy Chemo. We decided that we would do what ever we could to fight this to preserve time together as a family.
Following these scans, it was determined that a needle biopsy was not an option. They explored a biopsy of the primary pancreas tumor via Endoscopic Ultrasound. This would be conducted via a tube into her stomach with an ultrasound on the end. Once the tumor is found, they can puncture through the stomach wall into the pancreas to obtain a sample. Some research suggests that this risky when dealing with adenocarcinoma due to the rapid growth rate that it presents. It may present a path to the stomach and spread the disease. After a tumor board met at Naval Medical Center San Diego (Balboa), it was decided that the Surgical Oncologist would do laparoscopy to obtain a piece of a liver spot for biopsy.
On 24 October 2017, Esther underwent laparoscopic surgery. We were under the impression that if the surgeon could get to the pancreas, he would obtain a biopsy of that tumor as well. At the conclusion of Esther's surgery, the surgeon came out into the waiting room and interrupted my "touch and go pattern" of micro-sleeps. He sat me down in a small room with 3 chairs, a small table, and a box of tissue. I knew this wasn't going to be good, but already played out most scenarios in my head. He placed a piece of paper on the table that showed pictures of the liver spot that he biopsied. He said he only took samples of the one liver spot. He described that when he touched the tumor, it sunk back into the liver like a deeply rooted pimple. He went on to say "this is what adenocarcinoma looks like". I then immediately asked if he could remove the pancreas tumor and any other liver tumors to prolong life. He replied that no surgeon would operate on stage 4 adenocarcinoma due to rapid growth of the disease, the risk is just too high with no benefit. This is why he sat me down in the "Bad News" room. No offense to him, but I told him how much I respected him and thanked him for how genuine that he had been to us. I then told him that I would be scouring the earth for a surgeon who would. I knew surgery was our best option for long"er" term survival.
After this, we waited and prayed some more.
On 1 November we received the pathology report. It was the rare Neuroendocrine Tumor. This was awesome news. A slower growing cancer immediately giving us 16% chance at 5-years. They also told us it was "well-differentiated". Again, thanks to google and scholarly articles, we were able to learn that Neuroendocrine tumors, or NETs, can be categorized by their level of Ki67. This is a proliferation (growth) marker for NETs. Esther's tumor was a Grade 2 showing 5-6% Ki67 in the liver spot. Grade 2 (G2) is 2-20%. Grade 3 (G3) is greater than 20%. https://www.ncbi.nlm.nih.gov/pubmed/23588555
After hearing this, the doctors started discussing surgical options as a means of treatment! Naval Medical Center (Balboa) doctors said that they would remove the primary tumor in the pancreas and monitor the liver spots for follow on treatment. They told us it would increase our odds to 50% for 5-years, and being a young healthy person, most likely well beyond that. We are cautiously optimistic. It is tough, after going a month thinking we only had months together, to starting to contemplate counting in years.
Following the pathology, Esther underwent an Octreotide Scan. It is known that most NET tumors have a high concentration of somatostatin receptors. These receptors draw in Octreotide and can highlight other tumors in the body via CT scan. Luckily this scan did not present any new disease and just verified the pancreas and liver areas.
We still wanted a second opinion and submitted everything to UCSD Moorse Cancer Center. Again, we wanted to be aggressive and wanted to see if they could remove the disease in the liver as well as the primary pancreas tumor. It turns out, this hospital often has patients referred to them with NETs and has informally specialized in them due to seeing so many. After Esther's case was presented to the tumor board at UCSD, they decided surgery was the best treatment option as well. They were confident that they could remove the disease in the pancreas and were hopeful in removing most of it in the liver during the same laparoscopic surgery. This was awesome news!! First they ordered a Dotatate-PET/CT. It is a highly specialized scan that was recently approved by the FDA. In May 2017, the hospital acquired a new FDA approved Dotatate-PET/CT. This combines the ability to target somatostatin receptors with metabolic (burning sugar) activity. This would hopefully provide a better picture of the liver to the surgeon to plan appropriate resection/treatment of liver disease.
Continued in journal...