We were certainly caught by surprise in November 2009! That was only 3 months---a bumpy roller coaster ride-- ago! A routine ultra sound was ordered in October just to make sure my husband, Jim's pancreas had not been compromised from the polycythemia he has. The ultrasound was inconclusive so he had to have an iodine contrasted CAT scan--not an invasive procedure and certainly not something we worried about. A few days later on the way home from an errand Jim got a call from the hematologist.
"I have the results of your CAT in front of me. You have two huge masses sitting on the top of each kidney in your abdomen. I don't think they are cancer, but you need to see a surgeon as quickly as possible."
Our primary care physician sent us to a urologist who, after reading the radiology report recommended that we see a surgeon. The radiology report suggested that it was liposarcoma--cancer. Many days of conferring with friends, specialists, sarcoma support alliance groups and our PCP we began weeks of working with our insurance trying to find a surgeon who was very skilled in sarcomas.
We found that waiting at home for others to "get around to it" was not an option. Since we didn't know how fast they were growing and now he began experiencing periodic serious pain in the kidneys we took matters into our own hands. So...after many failed attempts to reach the schedulers we began picking up records to hand carry them ourselves to various offices in the Arizona Southeast Valley.
Surgeon #1 could not work with our insurance company but recommended another Surgeon #2 who had impressive credentials. That appointment with Surgeon #2 took place right before Christmas. We weren't prepared for his definitive Cancer diagnosis, nor his surgical plan which included removal of what he thought was only one tumor, both kidneys, partial removal of the pancreas and bowels. Following the appointment the surgery date was scheduled for January 24, 2010 with no pre-surgery biopsy option. He was very nice and confident that after the surgery Jim would feel better than ever and have a perfectly normal life! After we began sifting through that information, common sense told us that was not possible!
We began seeking advice from friends and called one cancer facility after another. All of those were dead ends for one reason or another--either they didn't accept our insurance or they didn't give second opinions. I don't even remember now when Mayo Clinic was first suggested, but with further research that seemed worthy of a pursuit. Maybe "pushing" is a more accurate word.
Everything about Mayo Clinic from start to finish has demonstrated thoroughness, caring, organised and skilled care. Surgeon #3--Dr. Wasif's specialty is liposarcoma. The appointment with Dr. Wasif took place one week before the scheduled surgery date with Surgeon #2. After a thorough exam which included listening to every aspect of Jim's medical history, he concluded that there needs to be more definitive testing before surgery. In that interview he heard what we had shared repeatedly with every other physician who did not "take note" of it. At the end of the appointment we asked, "should we cancel the other surgery?" He said, "I don't think you would survive it." We cancelled.
Jim was diagnosed at age 3 with congenital adrenal hyperplasia. He took cortisone, prednizone or dexamethazone since that time until an endocrinologist suggested it was all right to discontinue all medication at age 30, before we left for our first missionary term in the Philippines. He was still taking it on our arrival in the PI, but when he ran out and no longer could get it there, he stopped. He felt great so that was that! In all of the years that followed no PCP ever seemed concerned with his childhood disease until we met with Dr. Wasif in January.
In the days following Jim had appointments with the endocrinologist, tests and a biopsy. The new diagnosis was: no liposarcoma, no cancer; the massive tumors were NOT tumors at all, but were in fact the adrenal glands that had grown to massive sizes, previously undocumented. It's what Surgeon #3 thought all along. The surgery would not be without risk, but without removal the risks involved compromising the other organs and bleeding...they had to be removed.
Today, I write 4 days following the successful removal of both of Jim's adrenals, cancer free. He is recovering very well with all of his organs-in place-minus the adrenals of course. We will always encourage seeking 2nd opinions, but the bottom line is God is in control and directed our steps.