Hi…..I just recently came across this site and have spent hours reading your posts. What a wonderful place you have here. Strangers helping strangers. Strangers becoming friends and a community of survivors entwining themselves in the lives of others, with one overwhelming theme……………………to help.
Although my case has had a pretty happy ending for the time being, I’d like to become part of this message board. It’s possible that I might even be able to help a bit.
For more than 30 years, I was the guy doing your CT and MRI scans. I was doing CT scans when the first scanners came to this country back in the mid 70’s. The Cat Scans you have today with and without contrast…..asking you to hold your breath for about 20 seconds possibly 6 times total, used to take close to 90 minutes. MRI did not exist. During the past 30 years I’m guessing I’ve measured thousands of renal cell carcinomas. I was the good guy Technologist. If you asked how things looked…..whether things were better or worse, I’d tell you to pull up a chair and I’d run through the images explaining everything I could to put you at ease. Whether it was a CT or an MR a day didn’t go by where I could not have lost my job, simply to send everyone home with enough information to either know they had a long way to go, or things were looking better. It was always those “things are looking better” late, on a Friday that made me feel good. Knowing that I gave a patient a good week-end. I worked for one group of Radiologists for 28 of those years and the only complaint they ever had about me was and I quote…..”YOU SPEND MUCH TOO MUCH TIME WITH THE PATIENTS”. I always said to myself…..I can live with that. If once a year I had to hear about that in my evaluation, so I heard it about 30 times. Big deal.
I decided to retire a couple of years early. Needed to take care of Mom who was in the final stages of Alzheimer’s. All those years I made sure I always had the best health insurance possible. I always paid those extra few hundred a month to make sure I had what is called today the “Cadillac Plan” Actually I never liked Cadi’s but it just meant the best of the best. After retiring, I paid for COBRA and when it was gone I applied to Blue Cross, Aetna, Vista, Humana, Cigna, and United and have denial letters from all. Seems being on blood pressure meds and Crestor for elevated cholesterol are both pre-existing conditions. (Only in America). Thank God in 67 when I graduated from high school, I enlisted and spent 6 years in the military. Back in the early 90’s I registered myself for VA healthcare and had blood work there once a year to make sure I remained in the system. So, at the age of 59, four years ago the VA became my entire healthcare system. Luckily the Miami VA Healthcare System is part of the University of Miami. The same doctors that rotate through UM and Jackson Memorial also rotate through the Miami VA. It’s an incredible facility and no matter what my healthcare needs, I was taken care of. Just small co-payments here and there.
So how do I find myself on the other side of the coin? (I love that expression) For more than ten years my hemoglobin has been elevated. Usually in the 18’s. Of course that would mean that my RBC’s and Hematocrit was also up. I was always told………………….”Jeff, that’s just you”. Since there were no other symptoms I just left things alone. Last year my primary called me after blood work and said, listen it’s at 19.1 now, and you need to see the hematologist in Miami. Drive the thirty miles and see what’s going on. After four trips to the Miami VA hematology department they were all scratching their heads. Every blood test known to man and nothing to explain it. There is a hormone produced in the kidneys called erythropoietin. It basically tells the bone marrow how many red blood cells to produce. Mine was repeated over and over again and stayed at 11. Low normal. No reason for worry. So the end result is “You have Erythrocytosis”. That means your hemoglobin is elevated and nobody on earth knows why. Let’s just have you come here three weeks in a row, give blood (500-600cc each time), no different than donating blood and bring it down for a while. No problem, done. The head of the hematology department says to me….”come back in six months and we’ll see if it worked its way back up”. I said thanks for everything and left. Just before I got to the elevator he came quickly down the hall, grabbed me and said I just thought of one thing we didn’t do and this might me the cause. He said when you first came here you told me you had bilateral renal cysts. I knew this because of a CT I had years ago for something unrelated. He said if you have many more of them now, this could be the cause. He said have a CT done with and without contrast and we’ll see. Three days later when the Cat Scan is over, I give the technologist the CT Tech Secret Handshake and he lets me sit down and check out my images. In less than ten seconds I spotted my 2.5cm RCC. The few renal cysts were just where they were ten years ago, but in the lower pole of the right kidney, there it was. I looked at what we call the delayed post contrast films, I put an ROI measurement on it pre and post contrast and knew I was having surgery. While at the table I checked out my liver and the base of my lungs. Nothing interesting there so I thought this is early and I’m good.
Heading to the urology oncology department to discuss the surgical options they notice a bit of hematuria. (Blood in the urine). Just a little and said “it’s probably just a little prostatitis” but since you’re going to have surgery, before we begin we’ll do a cystoscopy in the OR after you’re asleep.
Because a partial nephrectomy was possible, the laparoscopic plan was discussed. But because of previous hernia repair many years ago with lots of mesh, I was not a candidate for it. Too many adhesions to deal with. The surgeon says to me “are you in luck”. There’s a fairly new way of doing this laparoscopicly from the side. It’s called Retroperitoneal Laparoscopic partial nephrectomy. Same laparoscopic technique, but they simply enter the peritoneal cavity without disturbing the abdomen. My luck, the head of this department who works three days at University of Miami hospital, next door, also works two days a week at the VA. He just returned from Duke where he did a fellowship in this procedure, and off we go.
Waking up in the recovery room was an experience and a half. About fifteen minutes after waking up the surgeon comes in and says “what a lucky guy I was”. He said when we did the cystoscopy, we unexpectedly found a 3.5cm Low Grade Papillary Urothelial Carcinoma. It was hanging free and attached to the wall of the bladder by a little stalk. A simple tug and it was gone. He could not believe it was so large but non invasive. They also removed what proved to be a Multilocular Cystic Renal Call (Clear Cell) Carcinoma, 2.0cm. All confined to kidney and not involving resection margin.
The only follow up I needed was a cystoscopy at three months and a renal ultrasound. Those are done and all is well. So now it’s a check once a year and hopefully life goes on.
This was a great venting process for me today. I’ll continue to read the boards here. You’re an amazing group of people. I’d also like to say if there is any way I can help anyone……….explain CT or MRI impressions as a layman, I’d be happy to help. Sometimes doctors don’t give you enough information to clear your head. Of course nothing I say would be definitive, but bouncing things off someone who has been doing these scans for three decades might help. I wish you all well.