In case you missed the pancreatic beginning, here it is. Although it ends on a positive note, the December 2023 CT scan showed otherwise. It revealed the growth of a cyst from the area near where the incision for the distal pancreatectomy had been made. In January an endoscopic ultrasound of the esophagus retrieved fluid from the cyst, which two of three tests indicated that the cyst was of a type that could become cancerous. However, that didn't mean it would become cancerous.
The endoscope also revealed that the esophagus was irritated throughout its length, caused by a hiatal hernia leaking acid from the stomach. I hadn't had heartburn or any other symptoms, so that was a complete surprise to me. A daily pantoprozole (OTC Protonic) tablet, a 24-hour acid-reducer. was prescribed.
In June, another CT scan and MRI showed that the cyst had increased in size and was pressing against the stomach wall. The gastroenterologist had initially thought it did not require immediate surgery but now recommended it be removed, and the surgical oncologist agreed. Because of a recent event, my primary care physician thought it should be delayed for at least another three months. On the other hand, my cardiologist was willing to agree because of the cost/benefit ratio.
In the meantime, some actions by the surgical oncologist had motivated me to seek a second opinion. One of the recommendations of my primary care physician was Johns Hopkins Hospital in Baltimore, and I learned that they even had a Pancreatic Cyst center! Their appointments rotated through the various surgeons, and I lucked out by seeing the director of the surgical center.
She said Johns Hopkins uses an advanced technique called molecular screening which could determine dangerous mutations of genes. Coincidentally, she knew a gastroenterologist at the John Hopkins Cancer Center at Sibley Hospital, just across the Potomac River from us, who could perform the procedure.
September 4th I was prepared for an endoscopic ultrasound, when the anesthesiologist stopped by to ask if I had received a cardiac clearance. Perhaps he'd just realized the age my birth date corresponded to. In the heat of the moment I forgot that I actually had a copy of his visit report in my phone, but fortunately, he was able to contact the cardiologist.
Afterward he said that my vital signs had remained level during the procedure, an encouraging sign for a possible later operation. Fluid was again collected, and the ultrasound revealed that the cyst had not grown further. The endoscope's camera also showed that the pantoprozole had cleared up the irritation of the esophagus.
Three weeks later the DNA Assay results came back, and I discussed them in a video call with the doctor. Four genes were determined to have mutations. Three were tumor suppressor genes, which would be inhibited from performing that important function. Two of the four did not concern her that much, but the TP53 mutation was more worrisome – it appeared in 60% to 70% of cancers that were removed. Even more concerning, the SMAD4 mutation was most indicative of cancer.
Because of these concerns, she recommended that the cyst be removed. (The doctor who performed the recent endoscopic ultrasound independently recommended the same thing.) She said the other possibility would be close observation, with imaging done every three months.
I said I didn't think those observation intervals sounded very close to me; they leave a big gap for something to appear. She said she just gave that as an option because different people have different risk tolerances.
I asked if it could be done laparoscopically, and she said they use the Da Vinci robotic system that is minimally invasive. (Although Ken Burns' recent PBS series illustrated many of Leonardo's medical discoveries, I don't recall this one.) However, she wouldn't know until internally viewing the extent of existing scar tissue whether a more invasive technique would be necessary. I would know which procedure had been used when I woke up!
The difference would be four small holes where instruments would be inserted versus an incision through tissue and muscle in the abdomen long enough to access the area. I still remember the unpleasant aftereffects of the incision required to remove an inflamed appendix many years ago, so I was anxious to avoid a larger one.
I asked who would be doing the operation and she said she would, of which she does around 150 a year. So I decided to go ahead with the procedure at Johns Hopkins October 31st, which was nearly seven months since the previous event.
I was fortunate that the doctor spent the time – an hour and a half – clearing out the scar tissue from the previous operation using the Da Vinci robot. It was a pretty complicated operation, requiring another four hours. It included removing about two inches of the lower stomach – out of a total of twelve inches – where the cyst had protruded. She'd had an earlier emergency, which delayed my operation two hours, so she may have had a really long day in the operating room.
I was in the hospital for six days and fortunately, a suite was available for Betty Lou at the nearby Patient and Family Pavilion which provides affordable housing for cancer patients. Suite may be somewhat of a misnomer; it included a separate bedroom; huge bathroom – no doubt to accommodate those with mobility issues; "dinette" that included a refrigerator, microwave oven, coffee maker, and toaster oven; and an area with sofa, reclining chair and large flat TV.
It was just across the street from the hospital via a long enclosed pedestrian bridge, where Frisky became a favorite of the guards who checked one's bags.
To accommodate the healing of the stomach, I had to gradually progress from a liquid diet to a soft diet to several small meals a day to a more normal diet, which fortunately occurred on Thanksgiving Day. Betty Lou hadn't prepared a big spread this year, because I hadn't been eating much, but a kind neighbor brought over enough of a Thanksgiving dinner to last three days!
As it happened, I had also become disenchanted with my onocologist, and the Johns Hopkins doctor recommended one at the Schar Institute in Fairfax with whom she had worked in the past. When we read his credentials, we thought it unlikely I would be able so see him anytime in the near future. Fortunately, no doubt thanks to her influence, I was able to see him in early December.
The pathologist's report had indicated there was cancer in the lining of a duct in the portion of the pancreas that had pressed against the stomach wall – and was removed – but six lymph nodes were negative. I had assumed that because of my previous experience with chemotherapy, the only treatment would be radiation.
However, after further discussion with the oncologist, he concluded that my adversity was caused by the Capecitabine tablets and recommended a course involving only Gemcitabine infusion. If I tolerated it well, Abraxane would be be considered to add to the infusion. This time, with two cycles of two weeks of chemotherapy with one week off. Eventually, three months are called for, then radiation therapy would then be prescribed, five times a week for five weeks.
Once again, a mediport will be implanted, this time prior to the first infusion, which is just before
New Years. We'll see how it all works out this time. Unfortunately, the timing means that I won't be able to accept
the kind invitation from Betty Lou's sister and brother-in-law to join them in their time-share villa in Cancun.
Update: As previously noted, my earlier experience with chemotherapy began with the delayed implanting of the mediport, resulting in a painful first infusion in my arm. This time, the schedule was correct, but almost everything else about the process went wrong