Bob Crowell was diagnosed with Alpha-1 Antitrypsin Deficiency in 1994, when his sister found out she was a ZZ Alpha. Bob and one of his brothers tested to also be a ZZ.
Alpha-1 Antitrypsin Deficiency (Alpha-1) is a condition that is passed from parents to their children through their genes. This condition may result in serious lung and/or liver disease at various ages in life. For each trait a person inherits, there are usually two genes and one gene comes from each parent. People with Alpha-1 have received two defective alpha-1 antitrypsin genes. One defective gene came from their mother and one from their father. There are many types of defective alpha-1 antitrypsin genes. The most common abnormal genes are called S and Z. Normal genes are called M. A person who does not have Alpha-1 will have two M genes (MM). People identified with Alpha-1 most commonly have two Z genes (ZZ). Current evidence suggests that about 100,000 people with Alpha-1 (ZZ) in the United States. Another deficient gene combination is SZ, although people with this gene combination are less likely to get lung or liver problems than those with two Z genes.
Several years ago, when Crowell went for his annual checkup (which includes a PSA or Prostate Specific Antigen exam), his levels were elevated. He went in for a biopsy, which came out OK, and after that his PSA came back down.
In the fall of 2009 he had another annual checkup, and at that point his PSA was going back up.
“So my urologist followed it for quite awhile, and gave me some antibiotics to reduce inflammation. I went almost 10 months and it didn’t come down, so then I had another biopsy and it indicated I had prostate cancer,” Crowell says.
That’s when Crowell started his radiation treatments. At this time, he was also seeing a hematologist/oncologist who along with his urologist was overseeing his hormone treatment in conjunction with the radiation.
“In February 2011, I started radiation and did it every day for 8 weeks. They weren’t really too bad, they made you tired, but I didn’t really feel more tired than I usually did. The main side effects were bathroom accidents,” he says.
Crowell continued his hormone treatment for another two months after his radiation was done, and at this point, just has follow-up appointments to check in, and continue to get his PSA tests done.
“Nobody has used the term ‘cancer free’ to me, but I will ask the next time I see my doctors. They’re not going to do another biopsy unless a PSA test would indicate it,” he says.
Despite having Alpha-1 and cancer, Crowell says that creating a routine helps him tremendously.
“Sometimes it’s difficult getting up and going in the morning, but once I get into my routine and what I need to do, it works out quite well,” he says. “I get up and get going in the morning as opposed to wasting time.”