I'd posted this on another thread and Linda suggested I posted it as a new topic, so here goes ----
. I'm a new member (just found the site today) and have already found it be very helpful. I wanted to specifically comment to JayMan56 - please do whatever you can to have your surgery as soon as possible..Back in July my husband (age 45) had a routine exam and the Dr. thought he felt a nodule on his prostate. His PSA score was only 2.5, elevated from his last score, but not anything extreme. They gave him a series of antibiotics, and his score dropped to 2.1. They decided to schedule a biopsy - I guess that was about the 2nd or 3rd week in August. Our appt. to find our the results was Aug. 25th. The week before that my 20 year old son was fond to have protein and blood in his urine, and was advised to see a nephrologist to find out if he had kidney disease. On the 22nd we found out that my dad's adenoid cystic carcinoma had returned with a vengeance, invading almost the entire inside of the right side of his face. I honestly didn't expect my husband's biopsy to turn up anything, but it did. Out of 12 samples, 2 showed cancer - one 3%, the other 4%. His gleason score was 6 - what the pathology report indicated was low risk. His prostate was not enlarged and he'd had no symptoms of any kind of prostate trouble. The cancer was not found at the nodule site.
Needless to say, I was very emotional - the Dr. reassured us that with my husband's age, physical condition and the pathology report, we had a great chance of recovery. My husband had already decided that if the biopsy came back positive, he wanted surgery. Our 18 year old son was leaving for USMC bootcamp 2 days later, & would be graduating the day before Thanksgiving. Since the cancer appeared to be non-aggressive and the Dr. said the pathology wouldn't change a whole lot even going in to Jan., we initially thought we'd wait until after the holidays. Part of our decision was based on my husband being self employed in Construction, and we needed to set money aside for the weeks of work he'd be missing (at least 6 weeks because of the lifting he does).
We went to church that Sunday and the pastor was speaking on God's will, and why bad things happen to good people. He mentioned both the situation with my dad and my husband. After the service so many people came up to us, encouraging us with information about their own family members who had experienced the same thing, and how well they did. But over and over people kept telling us not to wait. One lady whose dad is recovering from prostate cancer told us money was no object, that they would take care of my husband's pay. We were stunned. The next day our pastor called and said he'd had 5 families that had come up and offered to help cover my husband's wages, they didn't want finances to influence when we scheduled the surgery. In the end we received 6 weeks of wages plus an extra $3,000.00. We figured maybe God was trying to tell us something about the date of the surgery. So we told the Dr. we wanted it done in Oct. - now we just had to see what was happening with my son and my dad.
My son's subsequent blood and urine work showed no sign of kidney disease, although he still had blood in his urine. Our nephrologist told us he'd worry aobut the kidneys, we had enough to take care of. So at this point we were waiting on what the Dr.s said about my dad. He was referred to a specialis at USC (he's in CA, we're in NC). Initially they decided to do an extremely invasive surgery, basically removing half of his face, then rebuilding it. The insurance approved it, but they had to do a full body scan also. While we were waiting for that to happen, our Dr. called to schedule the surgery for Oct. 6th. I panicked, knowing that I would be needed to help care for my dad, and my husband. For a week we were on the phone with the Dr., trying to reschedule for later in the month. I thought for sure they would get my dad in as soon as possible because the cancer was so close to his brain. Our Dr. came through with a date of Oct. 17th. Now we were still playing the waiting game with my dad, and the schedule was getting tighter.
He then got back the results for his body scan. The cancer had spread to his liver, lungs, spine and hip. We were devastated. He was relieved. He was so worried about the surgery - it's 8 months to a year to totally recover. The Dr.s decided to treat his hip with radiation, and his face with cyber knife radiation - very cutting edge. The cancer in his lungs and liver is in multiple spots, but very small.. When his spine starts to bother him, they will hit that too. They said if they requested all of it the insurance would deny it, saying he's too far gone. They told him that he had a year plus, and that they can get his quality of life back to what it was. Since then the cancer grew rapidly in his face, pinching the optic nerve so that he lost his vision, and putting him in escruciating pain because of the swelling. Fortunately they started the cyberknife last week, and after one treatment the cancer visibly shrank, so he will be comfortable soon. They also believe he will recover his vision.
So I didn't need to go out to help with recovery, his girlfriend could handle it, and we went ahead as scheduled with my husband's surgery. Everything went great during the surgery, the Dr. was extremely happy with how the nerve sparing part went (and so were we). Having it done laparoscopically made recovery so much easier. But the day after the surgery the pathology report came back. There was more cancer than thought, and on one spot it was in the margin, up against a muscle wall. The Dr. said it was in a very unusual spot - not an area where they typically find it. I know everyone holds their breath as they wait for that first PSA result. We're hoping that what they found in the margin IS all the cancer that there is. But I'm so grateful for our friends and family who pushed us to get the surgery done as soon as possible. 3 more months for it to grow outside the prostate could have really hurt his prognosis.