Nelson Civello – Florida
April 1, 2015
After fighting prostate cancer it appeared that I would resume “the good life” of a retired executive playing golf and living on the beach in Florida with my wife of 42 years. On my 67th birthday we celebrated with a steak dinner. But cramping and distention on the right side of my abdomen was the result. My primary care doctor did a sonogram which discovered gallstones and the GI doctor ordered a CAT scan, and endoscopy, which he says, revealed nothing more. I then interviewed surgeons who ordered another CAT scan that showed some potentially suspicious findings but all the doctors agreed it was time to remove the gall bladder, nothing more. Three weeks after that surgery, symptoms of cramping, gas and obstipation (intestinal obstruction) were better but not gone. I re-read the last CAT scan report but did not understand some comments, so I became suspicious and insisted that my primary care physician find a new gastroenterologist who shared my skepticism. This new GI called the Chief of Radiology who, upon challenge, amended the CAT scan report to read Linitis Plastica; a rare stomach adenocarcinoma was a possibility from the thickening of the stomach walls which had been seen all along as gastritis. There had been a misspelling in the original CAT report, which no one had caught. An endoscopic ultrasound with biopsy was performed at a different hospital with different doctors as a double check but with no expectation. While we were driving back to our home in New York, the cell phone rang when we were somewhere in northern North Carolina. The new GI doctor was calling to say, ” I never expected to have to make this call but…. Get to an oncologist right away, and have a PET scan to determine the extent of your adenocarcinoma. My wife and I pulled off the road in shock. It was early June 2013, and my CATs and endoscopy in December and February had been dismissed as only gallstones and obstipation. Now it was cancer as well? We never knew anyone with stomach cancer. Surely this can’t be good, and what if I didn’t remain skeptical after the gall bladder surgery, would I be sailing along with this monster growing inside of me? Before the gallstones diagnosis, I had weighed 220 lbs; I am now 200.
My story continues with excerpts from the emails that I had sent to my support network to keep all informed.
My family and friends,
I am sorry to report to you that I have been recently diagnosed with stomach cancer. Last Friday we visited Roswell Park Cancer Center here in Buffalo to seek a second opinion of the diagnosis and a treatment plan. The doctors there confirmed the diagnosis but said that they needed to perform more tests to determine the staging (spread) or the grading (aggressiveness). Without a complete diagnosis they could not recommend a certain treatment plan nor give me my prognosis.
So they scheduled me for an exploratory surgery on Wednesday at Roswell after which they will send more specimensto their pathology lab for further evaluation. I should have a clearer picture by this coming Friday.
I do know that it is serious and at least somewhat aggressive, and although the detection was not as early as you would hope, there is some reason for optimism that it was caught early enough.
My Family and Friends,
Yesterday went about as well as we could have expected. Sorry I couldn’t write sooner but the general anesthesia left me loopy for most of the day and I had to sleep it off.
Although the pathology report is still being created in the Roswell Lab, my doctor indicated that by his internal observation with the most modern technology, the cancer doesn’t appear to have spread outside the stomach walls neither on the inside nor the outside.
This part is very good news because this means that “it” is treatable. But because it covers about 60% of the stomach wall, it will be a hard fight. Still, with many reports and doctors’ meetings during the next week, the treatment plan tentatively looks like chemo, then surgery, and then more chemo.
Get ready for “skinny Nelson.”
Chemo Starts Tomorrow
Friends and Family,
All of the tests are in, and my diagnosis is now known to the extent it can be known before surgery: Stage 2, non-metastatic stomach cancer. Specifically I have a rare form known as linitis plastica (LP), a diffuse, infiltrative type which is aggressive, but in my case, presents as if it is trapped in the stomach wall and, therefore, very hard to detect. Again, not early, but early enough. My treatment will be 9 weeks of chemo (ECX), starting tomorrow at Roswell, followed by a four week break, then surgery, a full gastrostomy in late September, with a 7-10 day hospital stay, some rest and then 9 more weeks of chemo. The prognosis from the doctors is: “The intent is curative,” a statement that gives me much hope.
Although I face a long, hard battle, most people with a diagnosis of LP don’t hear those words from their doctors since they present too late. I am seeking a second opinion from the Cleveland Clinic as to the surgical aspects of this plan only. Since that takes time, I chose to start the chemo immediately at Roswell since time is of the essence, and this treatment phase is considered “standard of care.”
Chemo brings me up and down and I have had some bad times. I currently have a bad case of hand foot syndrome, making it hard to walk. But otherwise I feel good today and am heading down to the harbor front for lunch. Chemo resumes on Wednesday, and we fly to NYC one week from today. Patti, my wife, continues to prepare several healthy meals per day and many liquid protein shakes.
Today I was to start the third and last of my three cycles of chemo. Unfortunately, I have been interrupted for the second week in a row by side effects. After completing 21 consecutive days to complete cycle one, the second cycle got off to a rough start. Days of persistent nausea were then followed by hand foot syndrome (extreme redness and heat in the feet and sore and chipped / sore fingertips), which truncated the second cycle to two weeks with another doctor ordered week off due to toxicity.
Yesterday as I approached my third cycle, my newest blood tests revealed extremely low magnesium levels and once again low white blood cells. I needed to take another week off to take neupogen injections and a massive dose of magnesium. I thought I was tough, but this thing is putting up a real fight. Whatever it takes, we’ll get it back!
Undaunted, we leave for NYC on Monday for my appointment at Memorial Sloan Kettering on Tuesday with the surgeon who validated the laparoscopic, less invasive procedure. When I return, I will start the third and final cycle of chemo on August 21st.
Nelson Civello – Florida
Surgery Decision Made
Dear Friends and Family,
I know it has been a long time since I first wrote and since I last wrote. I was diagnosed on June 4th and now am finalizing my 10th week during this neo adjuvant (pre-surgical) chemo regimen.
But I have this week decided to have my surgery on September 26th at Memorial Sloan Kettering in NYC.
The doctors there have multiple times the experience in my kind of surgery than any of the other doctors in any of the hospitals I visited and perhaps do more volume of gastric surgeries than any doctors elsewhere in the country.
The chemo has been as difficult as billed, and I think I have faced virtually every side effect so far. I am in the last week of this round. We won’t meet the very aggressive goals set by my doctors at the beginning of chemo, but I am certain that I’ve completed enough therapy that it has helped arrest the tumor to set up the surgery.
Patti and I will be in NYC for a bit longer than three weeks, as I plan to complete my first phase of recovery before I travel again.
Off to NYC and Sloan Kettering
Dear Friends and Family,
The time has come. I have finished 10 weeks of chemo and experienced almost every known side effect. This week I had multiple tests including various cardiac tests and a CT scan. Everything checked out, and I am still a good candidate for surgery, which is good news. Surgery is scheduled for this Thursday, and we expect to remain in NYC for three weeks to complete my recovery. We will then return to Buffalo for another 9-week course of chemo. I now weigh 193 lbs.
Bump in the Road
Dear Family and Friends,
When you last heard about me I was just discharged from Sloan Kettering Hospital in NYC where I had undergone successfully a robotic gastrectomy and the pathology report regarding the apparent elimination of the cancer was very favorable. The chemo had reduced my tumor by 30% to help make this all possible. All positive!
Once I returned to Buffalo, I was finding it hard to swallow, so I was admitted into Roswell Park here for an evaluation. There they determined that there was a stricture or stenosis in my new esophageal junction, which had to be unblocked. This post-surgical complication only happens in 6-8% of these surgeries. I guess I am amongst the “lucky” ones. Roswell said that they thought they could reopen the closure over time with multiple endoscopies using a balloon catheter. This procedure requires anesthesia in the OR with full recovery. I have already had two done with minimal success because it was still early after the surgery. During this time I am limited to a liquid diet and am expected to try to prevent weight loss or face insertion of a feeding tube, which is very hard to do under the circumstances. Patti continues to prepare 6-8 liquid meals a day for me. My next procedure is Monday, and I am very hopeful that the opening will allow me at least some soft solid foods for weight maintenance. Resuming chemotherapy is on the back burner for now until I can fully recover from this complication. I am now down to 150 lbs.
Dear Family and Friends,
It is hard to believe that it has already been six months since my total gastrectomy at Sloan Kettering in NYC. Yesterday I received the results of my 6-month follow up CAT scan at Roswell and the results were “no detectable signs of cancer.” What a blessing and especially when you consider that I could not take the post-surgical chemo regimen because of my stricture complication (closing of the esophagus), which has required 12 separate procedures to be stretched open. Number 13 is scheduled at Roswell for next week.
But in spite of this complication and the second, which is an incisional hernia that will be surgically repaired this summer, the big picture could not look better.
With your help and prayers, great medical care by many professionals, and my wife Patti, daughters Lauren and Sherri, I apparently have overcome great odds against a type of cancer, which almost always wins.
I am humbled by this experience and will now pursue becoming a mentor, helping and praying for others who have not been as blessed as me.
And still the stenosis kept returning, even after 22 endoscopic dilatations. It became a monthly event to go under and get “stretched,” but it would reclose in 2-3 weeks. The surgeons, endoscopists and oncologists at both Roswell and Sloan Kettering believed that the remediation had failed and I would have to submit to a “Revision” surgery wherein the anastomosis would have to be taken apart and rebuilt. Unfortunately, this would have to be an open surgery with a large incision and a longer and more difficult procedure.
As a last resort, my daughter researched and found a very experienced and skilled endoscopist at UCLA Medical Center, so I traveled to LA and received three very aggressive procedures which worked. The UCLA doctor saved me from an open surgery that I fought to avoid in the first instance. I am not perfect or even normal, but eating most things is now possible with behavioral modifications. I am up to 158 lbs.
As you all know by now I had a second successful follow up CAT scan in early November, which revealed that there had been no recurrence of my gastric cancer at this stage. But the CAT picked up something in the colon and a pancreatic cyst. So a colonoscopy and an MRI were ordered. The MRI concluded that there is a benign cyst on the pancreatic neck and it will be followed closely on an ongoing basis. The colonoscopy picked up an adenoma, which is a benign, slow growing tumor that is two cm in size and too diffuse to remove through a colonoscopy. Laparoscopic surgery to remove a small part of the upper colon was recommended. It is now scheduled for Dec.8th, and my hernia will be repaired at the same time. I was told to expect at least three nights in the hospital and then no vigorous activity for at least 6 weeks.
My doctors and we certainly didn’t expect this, but once again I am the beneficiary of an early detection and, yes, again grateful!
And so, on December 8th, only 14 months after my third abdominal surgery, I had a fourth. My cecum was removed (upper part of the large intestine); my appendix, which shockingly contained a previously undetected carcinoid on the tip, was removed; the incisional hernia which was the size of a baseball was fixed; and one last endoscopic dilatation for good measure was performed. I was back to 150 lbs within a week.
Today am 170 lbs, completing two full months of Physical Therapy, and ready to return to golf in mid-April. Though I am not considered out of the woods for five years, it seems that I have beaten the odds, which for stomach cancer in America are only a 20%, 5-year survival rate. This could not have been possible without my faith, family, friends, first-rate medical care, the PREP mentors of DDF and thousands of prayers.