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Other Side Of The Coin

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

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.
Jeff

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

Hi David,
I never thought I'd see this thread again. I read over what I had written to introduce myself here back in August.......and I'm thinking about the state I was in back then. Thinking of my own situation, I sort of blame myself for my cancers. Having two unrelated cancers pop up at the same time (RCC and Bladder) brings me back to college in the 70's in a three year Radiologic Technology program and how much radiation protection was stressed. Actually during my one year internship at a local hospital here in Broward County Florida, we were scored on that. Over the years I seemed to let it go. I fell into the mindset of "if you can't see it, it can't hurt you". Very bad thinking on my part.....asking an assistant to push certain buttons for my while I covered myself with lead aprons and lead neck protectors just to make a nervous patient more comfortable, at the beginning doing thousands of early morning portable chest x-rays and not fully leading up and not standing back far enough as well as quick shots in the emergency room of gunshot wounds and things moving at a pace so fast when I yelled XRAY....everybody ran ten feet away and sometimes I never even grabbed my lead apron. I never registered a significant amount of radiation on my monitor but the "Compton" or scattered radiation is everywhere for a few milliseconds. I truly believe I gave myself these two cancers. That said.....when being exposed to radiation you need to balance the exposure on one hand and the importance of the information on the other. In a world where ionizing radiation had no effect on human tissue, I would always have a CT scan as follow up imaging for RCC. Today's 64 slice scanners are so fast, you're in and out in minutes. Also most facilities do sagittal and coronal reconstruction of the original images. The amount of information the doctor gets is now overwhelming. Even when I was working, people would ask me, "what's better....a Cat Scan or an MRI"? There is no answer to that. Each has its place. Nothing comes close to MRI scanning when it comes to the Brain, Lower back, shoulders, knees, and imaging of the carotids, circle of willis and other brain angiography. You don't even need contrast to get beautiful images of the carotid arteries as in MRI we actually use your own blood flow in a sequence called "time of flight" to leave no doubt in a surgeons mind if surgery is needed. If you were never diagnosed with any adenopathy, lymph node involvement and you're just getting these follow up scans to make sure another RCC doesn't show its nasty head, then I think alternation each year would be fine. Either way, you're going to do what your new doctor wants you to do. You have some input here, but he or she is going to have their way of doing things. As far as the cost goes, I'm guessing you have insurance so the fact that MRI'S get billed at a higher dollar amount, that shouldn't matter to you. If you're paying out of pocket for all this you can always get a cash price at small diagnostic centers simply by walking in with a prescription. An MRI that in a hospital would be billed out at maybe $4,000.00 would be billed from a diagnostic center at about $1300.00. If you walk in off the street and tell any of these centers that you want a cash price for an MRI of the abdomen (attention Kidneys) you might get the entire test done for 5 or 6 hundred. These places love cash. The variance in pricing is disgusting, I know.... but it is what it is. They talk about waste fraud and abuse in the system.......the Governor of my state Rick Scott, ran a company that had to pay 1.1 Billion dollars in Medicare Fraud.....He took the 5th amendment more than 75 times and the loons in my state made him Governor a year later. Go figure. The great thing for everybody......and so many on this board as I read every day (even this morning somebody posted "because of financial difficulties they had not had follow up testing") well in only 13 months everybody will be allowed to purchase healthcare. Other than my six years in the military, I've spent my entire life in this field and I tell you, anybody who thinks that healthcare in the United States should be a "for profit" system is either evil or never knew anybody who was truly ill and without coverage through no fault of their own. Now that I've lost half of my friends on the board, let me wish you well with your new doctor. Let's hope that he or she realizes that you're the type of person who wants to be involved in his care.....and that you're treated that way.
Regards,Jeff

angec's picture
angec
Posts: 622
Joined: Mar 2012

Hi Jeff.. i had typed out a whole reply here and it vanished, so if it shows up again partially written please ignore. LOL

How are you? I hope you are doing well. It sounds like you are!

I was wondering if you can answer a question while you are explaining so much here. I am not sure if i should have started a new thread but since I don't have the reports in front of me i guess that this might be ok. If you don't mind.

My mom 80, had surgery for rcc and two nodes in March after they found the mass in January of this year 2012. She had a follow up scan in August and she had two masses by the surgical clips in the renal fossil one 3cm, one 2 cms. She also had two small spots in her each lung with increaded uptake scattered.

She had her whole body pet/ct scan again this Monday and now she has more spots on lungs, bigger as it has progressed. She also has something on her duodenum that they say check by scope for a new primary cancer possibiltiy? She also has medustinal activity i guess the odes. Also the two masses she had by her renal fossil have decreased significantly and there is no longer metabolic activity there. The docs said he were sure they were cancer in August but they are shrinking and no activity.

I am wondering about the duodenum, i mean another cancer? And also what happened to those masses that shrunk? I am glad they shrunk but just don't know what it means.

I didn't see the report yet but just heard it read briefly over the phone by someone who really couldn't pronounce the words correctly. But the gist of it I wrote down seems like it will stand when i get the report.

Is there anything that you can tell me? You seem so very skilled and your input is very repected. Thank you in advance regardless.

Hope you continue to do well!!

Oh, the whole body pet/ct scan took more than an hour and also her sugar was elevated to 208 and they gave her nothing to bring it down and she was not allowed to take her insulin that morning. The last time it was high they made it go down before it scanned, saying it had to be blow 200, but this time not. I am so confused.

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

Hi,
Let me try and explain a few things. Some of this is out of my league, but let's do some of the easy stuff first. The last thing you typed was your curiosity as to why your Mom's sugar went sky high during the PET/CT scan. If she had just a PET scan it would have been done in the nuclear medicine department. Just like bone scans, thyroid uptake scans, even stress tests done on the treadmill. The radionuclide is the injection used for the PET scan. These radioisotopes are different for each test. This is not my field but I know they use caesium 137, iodine 123 and 131, Gallium and the one everybody recognizes is Thallium as in Thallium Stress Test. In Positron Emission or PET the injection is fludeoxyglucose, and it comes under many names. So that word right there should make you understand why her sugar went up. The main ingredient in the PET scanning procedure comes from sugar. I believe the half life of this isotope is short and the body gets back to normal pretty quickly.
I don't know the results of her pathology report but I would guess if her original surgery involved lymph nodes then the increase in nodules in the lungs would be the RCC spreading. For me this would be a guess and there are so many people on this board more informed than I am when it comes to metastatic disease coming from RCC. They've been through it, and my knowledge of pathology comes directly from my reading here.
As for the two masses in the post surgery renal fossa.....if they're going away they might have been some sort of inflammatory process. Maybe two hematomas. I can't think of anything else that would go away on its own. The doctors may have been wrong on that call months ago.
If she has a mass on her duodenum (in case you don't know.....that's the very first part of the stomach) and mediastinal lymph node activity, there very well may be another primary site here. I look forward to you typing the Impression at the very bottom of her New PET/CT scan. That should pretty much answer all the questions, especially since the Radiologist has a previous exam to compare it to. Best of luck to you.
Jeff

angec's picture
angec
Posts: 622
Joined: Mar 2012

Thank you Jeff for your great wisdom! I really put your brain to work and you came through! When i get the report i will surely come back. I shudder to think she an have another new type of cancer to add to the RCC. It just never ends! Would that be a colon cancer? Not sure.

Thank you so much again!

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

It would not be colon cancer. I know it's difficult if you've never been exposed to human anatomy but this is easy for you. The digestive system begins with the esophagus (that's right after you swallow, that leads to the stomach, then on to the small bowel (intestine)through the ileocecal valve and then to the colon or Large intestine. That's the colon.... from there to the rectum. When people have a colon cancer it can be in the ascending colon, transverse colon, descending colon or the recto/sigmoid. The duodenum is at the other end. Stop letting your head twirl trying to understand "Radiologist Speak"..................it will make you nuts. You're going to have the results of a new PET/CT in a few days and your questions will be answered. Good or bad, you're going to know everything.

Jeff

angec's picture
angec
Posts: 622
Joined: Mar 2012

Yes, i guess you are right. My head is swirling and new depression sets in. Didn't think it could get worse. But fighting two different kinds of cancer will blow mom's mind! Thank you so much Jeff. You are very kind to help me. Thank you for being so caring. xxoo

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Hi Jeff,

Thanks for the thoughtful reply. Now, I'll go into my next meeting well informed. The scans are so important but so confusing to a layman. I understand so much more now than I did when RCC entered my life.

I'm with you on the healthcare issue. In 2014 things will be better!

Thanks again, David

vittoria01's picture
vittoria01
Posts: 23
Joined: Jul 2012

Thanks, your testimony is beautiful, God bless you.
I would like to ask you a question: you had macrohematuria or microscopic haematuria.?
I had partial nephrectomy in June 2011 and I always microscopic haematuria.
I made uroTC, MRI, cytologic examination, urine all NED.
Sorry, I am Italian and I speak bad English.
A hug

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

Good morning Vittoria,
When I was 23 and living in England I was in a pretty bad car accident. During my 1 week hospital stay they had found microscopic hematuria. For almost 40 years I've always had that and all my doctors said since I've had it for so long, I probably fall into a small group of the population that when making urine in the kidneys.....some red cells spill over and that's why it shows on the dipstick but never to the human eye. Before my nephrectomy they did a cystoscopy just to have a look around the bladder because for the first time, I actually had a little blood in the urine. That's when they found a low grade 3cm tumor that was very easy to remove. Since then the blood has gone away, but I haven't had a urine test to see if I'm back to microscopic or nothing at all. In your case, I would guess your hematuria came from your renal cell. And now that your cancer is gone, the blood might be gone. If you want to check yourself just go to local pharmacy like Walgreens or any chain drug store where you live and buy a small bottle of sticks. A lot of people who are on low or "NO" carb diets want to be in a state of ketosis. You can check for ketones by dipping a stick in your urine and a little square will turn purple from beige. They have the same little stick to check for blood. Ask the pharmacist for it and do the test and compare it to the colors on the side of the bottle. Hoped that helped you.
Regards,
Jeff

angec's picture
angec
Posts: 622
Joined: Mar 2012

Hi Jeff... just wondering why the ct scan didn't pick up the bladder issue. That must have been a big surprise. Maybe the scoping is the only true way to see into the bladder. Glad it turned out well.

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

A CT of the Abdomen and Pelvis with contrast will have a look at the bladder, but only to show that it is filling with urine and also the overall outline of the bladder itself. There are some imaging studies that will have a look at the inside of the bladder, but the only way to get a real look-see is with a cystoscopy. Sorry for the late response here. Been driving all day. Happy Turkey Day
Jeff

angec's picture
angec
Posts: 622
Joined: Mar 2012

I see Jeff. That makes sense. Good thing the doctor went in there to check it, was a fantastic call, I think. I know those long drives.. go rest up and enjoy the night!

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

Just wondering if I may have misunderstood you. Were you asking about the bladder in your own case, or from my original story? Want to make sure I answered you're question....
Regards
Jeff

angec's picture
angec
Posts: 622
Joined: Mar 2012

Thanks for checking Jeff, I meant in your case. You had a scan that showed the kidney issue but fortunately he found the bladder issue so I wondered why the scan didnt pick that up. By the way, do you still have the micro bleeding? Sorry to hear about that bed, but the free food and beer should make up for it a bit!

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

Actually, I have some follow-up blood work and my first U/A coming at the end of this month. I'll know then. I can't imagine that the microscopic hematuria would leave after 40 years. That would mean my 3cm bladder tumor had been growing since 1969. That would be one for the history books.

angec's picture
angec
Posts: 622
Joined: Mar 2012

Stranger things have happened .. LOL Are you getting regular pet scans as well or did I miss that?

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