10 Minutes
But Really 20
I have 10 minutes of time to try to update everyone since my last post. I’m not just doing it because I feel like I have to. I like to write things out; it helps. Note that this or some later posts may not be as coherent as others.
Earlier last week we were starting to feel more in control of navigating Will’s cancer diagnosis. It’s truly been like a yo-yo or a roller coaster, or as a good friend helped me articulate, a yo-yo on a roller coaster from hell.
The moment we got the first call from Will’s GI doc saying the spot they removed during the EGD Scope was cancer, we sank . . .froze . . .were momentarily zombified. It was scary. The tears flowed. The fears flowed.
As we began learning more and meeting with Will’s primary oncologist in Conway, we were encouraged about a potential path forward. The PET scan did not light up like a christmas tree. A nurse from the oncologists office called to let us know it was localized. We remembered the GI doc saying the spot he removed was small. We began to think that we caught it super early. The oncologist seemed encouraging and positive.
She told us that the treatment regimen would be 4 doses of FLOT chemo over 8 weeks, then surgery, and then 4 more doses of FLOT over 8 weeks. We began reading about all of these. The oncologist helped us understand potential chemo side effects in detail. Earlier she had asked who we might want as a surgeon. We don’t necessarily have anyone, so we followed her recommendation. She recommended two very good ones at a local research hospital who specialize in these types of things. The cancer turned out to officially be gastric, though it is very close to his esophagus, so the thoracic surgeon will assist the gastric surgeon during the procedure. The appointment to meet with them was Friday. He had a chemo port installed the day prior to that in preparation.
The oncologist told us that the gastric surgeon wanted to do some laparoscopic surgery prior to chemo to view the area. If they decided not to do the laparoscopic surgery, we were supposed to start chemo today.
Friday changed all that. One thing we didn’t talk about with our local oncologist is “what does surgery mean?” In our minds, initially, we were thinking they’d shrink the tumor and then take out what was left. In our research prior to Friday’s meeting, we were reading about the reality of gastric cancer. It typically calls for a complete gastrectomy (removal of the stomach.)
In some cases, especially those caught early on, there could be a partial gastrectomy. We started to think that maybe since it seemed to be localized, partial might be a possibility.
Friday we found out it wasn’t. The Thoracic surgeon staged it at a 3, and the gastric surgeon said it could be a 2 or a 4. It all has to do with the way different types of cancer are staged. Apparently, there was one faint place in the PET scan that they saw and were concerned about. Apparently, the PET scan can’t always see everything and gastric cancer is really good at hiding. Adenocarcenoma, the type Will has, is a very aggressive type.
All that being said, it’s looking like a total gastrectomy is our best chance of no recurrence.
The Friday meeting was a little rushed. They had squeezed us in quickly and many of the staff were about to be gone for spring break. The nurses and staff were all kind, but the surgeons were blunt and business focused. We felt a punch to the gut. It was like getting that first phone call again . . .the drop in the roller coaster without the giggles . . .the yo-yo . . .from hell. The thing that made it all a blur is that of course we’ve looked at survival rates for this type of cancer.
According to the American Cancer Society:
5-year relative survival rates for stomach cancer SEER* stage
Localized 75%
Regional 36%
Distant 7%
All SEER stages combined 36%
If this little spot that lit up on the PET scan turns into something, we could be dealing with Regional/Distant.
We had a somber brunch together at a little bakery near the hospital. We sat wondering things like what is life like without a stomach? Why could this have happened? (I just sent off a radon test from our house to make sure it’s nothing like that.) Apparently gastric cancers are on the rise worldwide in young people. No one is sure why yet.
Regardless, we are determined to continue navigating and beat the odds. We also remember that these rates represent treatments 5 years ago and include individuals of all ages and comorbidity, so Will’s rate is different. Instead of having chemo today, we will wait until surgery, maybe April 3rd. He can start a couple days after that. In the meantime, he is having an abdominal ultrasound and biopsy of the questionable node on Wednesday, then a CT scan on Friday.
There’s so much more to say, but I am clocking in at 20 minutes instead of 10 and I need to take a shower. More to come later.