Other Side Of The Coin

MedScanMan
MedScanMan Member Posts: 107
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
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Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Welcome Jeff
    Boy, will you be a valuable new asset on this forum!! That was an absorbing bit of bio and I'm sure your future postings will be greatly appreciated.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Welcome Jeff
    [Duplicate post, but here's a second welcome anyway!]
  • garym
    garym Member Posts: 1,647
    Welcome to the club...
    Hi MSM,

    While I am sorry that you had to go through our little initiation process, I am also very happy to have someone with your technical expertise join the club. You seem to have a good sense of humor and a great bedside manner, so to speak, both are highly valued here.

    Welcome aboard,

    Gary
  • icemantoo
    icemantoo Member Posts: 3,361 Member

    Welcome Jeff
    [Duplicate post, but here's a second welcome anyway!]

    Scans
    Jeff,

    Feel free to respond to those members who have posted their scan results. The easy ones are those before surgery with small tumors (4cm or less and no other baggage) and those post surgery with clean scans. Unfortunately some of the scans are very challanging and are difficult to respond to.


    Icemantoo
  • MedScanMan
    MedScanMan Member Posts: 107
    garym said:

    Welcome to the club...
    Hi MSM,

    While I am sorry that you had to go through our little initiation process, I am also very happy to have someone with your technical expertise join the club. You seem to have a good sense of humor and a great bedside manner, so to speak, both are highly valued here.

    Welcome aboard,

    Gary

    Thank you all for the
    Thank you all for the welcome. Don't think for a minute that I don't know how lucky I am. Catching two cancers by accident and both early. Hope I can be of some help.

    Jeff
  • MedScanMan
    MedScanMan Member Posts: 107
    icemantoo said:

    Scans
    Jeff,

    Feel free to respond to those members who have posted their scan results. The easy ones are those before surgery with small tumors (4cm or less and no other baggage) and those post surgery with clean scans. Unfortunately some of the scans are very challanging and are difficult to respond to.


    Icemantoo

    Reading CT and MRI scans in full can spin your head. At the bottom of every report is an Impression. I can almost always make sense of those few sentences. That's all you really need to understand. Some radiologists read three pages where others can say it all in a paragraph. Depends on how much they want to cover themselves. But an impression is an impression. Nothing left to the imagination. Radiologists love to use the words Sub Optimal. That usually means the technologist didn't know what he or she was doing and if I'm wrong it's their fault. You can't imagine what goes on.

    Jeff
  • NewDay
    NewDay Member Posts: 272

    Thank you all for the
    Thank you all for the welcome. Don't think for a minute that I don't know how lucky I am. Catching two cancers by accident and both early. Hope I can be of some help.

    Jeff

    1st Question for you
    Hi Jeff,

    Glad (and not) that you are here. Sounds like you were very lucky for things to be caught in time. Since you offered to answer questions, I'm going to be the first to ask. My tumor was an incidental finding when a gastroenterologist was investigating another problem. I also have an additional undiagnosed problem that involves pain in the pelvis. My question is, if my CT was of the abdomen and pelvis and the only thing abnormal mentioned was the kidney tumor, can I assume the reproductive organs are OK or would the radiologist have even looked at them since that wasn't related to the complaint? Hope that made sense. I have already had an ultrasound for that problem that didn't show anything. Thanks for any help.

    Kathy
  • alice124
    alice124 Member Posts: 896 Member
    other side of coin
    Jeff - thank you for your generous and welcome offer. So glad you've decided to join us. I can only hope we don't wear you down with our many questions.

    I'm looking at a brand new CT scan right now but will try not to overwhelm you all at once. Thanks again Jeff.
  • MedScanMan
    MedScanMan Member Posts: 107
    NewDay said:

    1st Question for you
    Hi Jeff,

    Glad (and not) that you are here. Sounds like you were very lucky for things to be caught in time. Since you offered to answer questions, I'm going to be the first to ask. My tumor was an incidental finding when a gastroenterologist was investigating another problem. I also have an additional undiagnosed problem that involves pain in the pelvis. My question is, if my CT was of the abdomen and pelvis and the only thing abnormal mentioned was the kidney tumor, can I assume the reproductive organs are OK or would the radiologist have even looked at them since that wasn't related to the complaint? Hope that made sense. I have already had an ultrasound for that problem that didn't show anything. Thanks for any help.

    Kathy

    Hi Kathy
    If you had a CT of

    Hi Kathy
    If you had a CT of the Abd and Pelvis, I'm hoping it was with and without contrast. No matter what the ICD 9 code was (that means...reason for the test), the Radiologist is going to check every image in front of him. If the images of the pelvis are in front of him and he doesn't report a finding, he'll be working for you the rest of his life. Images of the pelvis that usually come up in the pelvis for women are of course, bladder abnormalities of contour as well as ovarian cystic adenocarcinoma (Gilda Radner). But that sticks out like a sore thumb. Nobody would miss that. I would say not to worry. Check the report, I'm guessing that somewhere it would say no abnormalities found in the pelvis. Today the scanners are so fast, I don't know any facility that does not include the pelvis, even if the physician only orders a CT of the abdomen. That is simply to cover them, not you. Wish you well.
    Jeff
  • MedScanMan
    MedScanMan Member Posts: 107
    alice124 said:

    other side of coin
    Jeff - thank you for your generous and welcome offer. So glad you've decided to join us. I can only hope we don't wear you down with our many questions.

    I'm looking at a brand new CT scan right now but will try not to overwhelm you all at once. Thanks again Jeff.

    Feel free Alice. Makes me
    Feel free Alice. Makes me feel like I'm back working again instead of watching Law and Order all day.
  • NewDay
    NewDay Member Posts: 272

    Feel free Alice. Makes me
    Feel free Alice. Makes me feel like I'm back working again instead of watching Law and Order all day.

    Question #2
    First, to make sure you took my first comment the way I meant it. I'm glad you are here, but not glad you have a reason to be here. My next question is: If the contrast is what makes things light up, why do they even do them without it?

    Thanks,
    Kathy
  • MedScanMan
    MedScanMan Member Posts: 107
    NewDay said:

    Question #2
    First, to make sure you took my first comment the way I meant it. I'm glad you are here, but not glad you have a reason to be here. My next question is: If the contrast is what makes things light up, why do they even do them without it?

    Thanks,
    Kathy

    Question #2
    Of course I took it the way you meant it. That's funny. As to your question on CT.....Only certain CT Scans are done with and without contrast. I'll type and I'm sure you'll understand this. Take a brain CT. For trauma no contrast is necessary. You're looking for swelling and blood. A subdural hematoma large enough to require surgery requires no contrast. Contrast, in all cases flows with the blood. If a possible mass is noticed in a brain CT with no contrast then contrast would be given to light up the mass. It would light up because the mass would be vascular and the blood flow will carry the contrast to the mass. Think of the iodine contrast as something that lights up to the radiation the scanner is zapping you with. Sometimes a chest CT will be done without contrast. Usually ordered by pulmonary doctors who are only looking for COPD or anything else not vascular. A normal CT exam of the chest needs contrast to light up the vessels in the center of the chest.....(Mediastinum). Very important for lymphoma as well as showing dissecting aneurysm of the thoracic aorta. In your case CT Abdomen and Pelvis. Always done without contrast in the ER looking for kidney stones. Contrast will actually get in the way here. Contrast works because it's an impurity as far as the body is concerned. This type of impurity is excreted by the kidneys. So imagine of you're looking for a little kidney stone and the ureters are filled with contrast sending that urine from the kidneys down to the bladder.....you'll never see the stone. For other reasons Abdomen and Pelvis CT scans are done to compare. There is a measurement that we do called an ROI.....(reigion of Interest). You measure the liver and spleen quickly without contrast and you can see if there is a fatty liver among other things. Kidney masses always have to be measured without contrast and then again with contrast. In the old days this would tell you even after the injection if a cyst is a cyst. Some RCC's can be seen with no contrast because of size. You just know. In my case because it was 2 cm and looked just like my other cysts the contrast ROI measurement left no doubt. I hope these examples helped. The bottom line is CT scans of the Abdomen are done first without contrast simply to have a comparison to what you see on the important scan post injection. If a person is allergic to iodine.....even the nonionic iodine.....which everybody should be using today then a non contrast scan can be done and there are some tricks we can do to check things by adjusting window levels.....(brightness and contrast). We sometimes do that when creatinine is above 1.5. Hope this was helpful.
    Jeff
  • DMike
    DMike Member Posts: 259
    Welcome
    Hi Jeff,
    I'm sorry you have to be here because of RCC but your presence will be very educational and beneficial to us.
    A couple of questions...First I think I know the answer to this after reading your earlier posts. I'm probably dense but I thought the preliminary action before the contrast injection was purely calibration (no one told me this I just thought this was the case) but now I believe those are the non-contrast scans you mention. Is that correct?

    2. On my last CT scan the doctor ordered abdomen, thorax and pelvic scans. The scan stopped at the top of my hip, shouldn't a pelvic scan show more than that?

    Thanks for your help, David
  • brea588
    brea588 Member Posts: 240

    Question #2
    Of course I took it the way you meant it. That's funny. As to your question on CT.....Only certain CT Scans are done with and without contrast. I'll type and I'm sure you'll understand this. Take a brain CT. For trauma no contrast is necessary. You're looking for swelling and blood. A subdural hematoma large enough to require surgery requires no contrast. Contrast, in all cases flows with the blood. If a possible mass is noticed in a brain CT with no contrast then contrast would be given to light up the mass. It would light up because the mass would be vascular and the blood flow will carry the contrast to the mass. Think of the iodine contrast as something that lights up to the radiation the scanner is zapping you with. Sometimes a chest CT will be done without contrast. Usually ordered by pulmonary doctors who are only looking for COPD or anything else not vascular. A normal CT exam of the chest needs contrast to light up the vessels in the center of the chest.....(Mediastinum). Very important for lymphoma as well as showing dissecting aneurysm of the thoracic aorta. In your case CT Abdomen and Pelvis. Always done without contrast in the ER looking for kidney stones. Contrast will actually get in the way here. Contrast works because it's an impurity as far as the body is concerned. This type of impurity is excreted by the kidneys. So imagine of you're looking for a little kidney stone and the ureters are filled with contrast sending that urine from the kidneys down to the bladder.....you'll never see the stone. For other reasons Abdomen and Pelvis CT scans are done to compare. There is a measurement that we do called an ROI.....(reigion of Interest). You measure the liver and spleen quickly without contrast and you can see if there is a fatty liver among other things. Kidney masses always have to be measured without contrast and then again with contrast. In the old days this would tell you even after the injection if a cyst is a cyst. Some RCC's can be seen with no contrast because of size. You just know. In my case because it was 2 cm and looked just like my other cysts the contrast ROI measurement left no doubt. I hope these examples helped. The bottom line is CT scans of the Abdomen are done first without contrast simply to have a comparison to what you see on the important scan post injection. If a person is allergic to iodine.....even the nonionic iodine.....which everybody should be using today then a non contrast scan can be done and there are some tricks we can do to check things by adjusting window levels.....(brightness and contrast). We sometimes do that when creatinine is above 1.5. Hope this was helpful.
    Jeff

    welcome
    I had an mri of abd due to lesions that showed on my liver in ct scan of chest without contrast. On MRI it was hemangiomas but found 2 cm lesion in mid posterior kidney. Radiologist reads is as enhancing complicated thick septations and calls it RCC as his impression. Can they tell most of the time from seeing this with and without contrast that it is cancer. I am having a partial neph on Aug 28th needless to say I am very scared. My urologist oncologist said it was a solid tumor and xphyotic he was my second opinion. FIrst urologist said it could be just a renal cyst. Im sure the radiologist would know the diff in cancer and cyst. This can be very confusing from one doc to another but 1st one acted stupid too me lol. He didnt see everything the radiologist did.
  • MedScanMan
    MedScanMan Member Posts: 107
    brea588 said:

    welcome
    I had an mri of abd due to lesions that showed on my liver in ct scan of chest without contrast. On MRI it was hemangiomas but found 2 cm lesion in mid posterior kidney. Radiologist reads is as enhancing complicated thick septations and calls it RCC as his impression. Can they tell most of the time from seeing this with and without contrast that it is cancer. I am having a partial neph on Aug 28th needless to say I am very scared. My urologist oncologist said it was a solid tumor and xphyotic he was my second opinion. FIrst urologist said it could be just a renal cyst. Im sure the radiologist would know the diff in cancer and cyst. This can be very confusing from one doc to another but 1st one acted stupid too me lol. He didnt see everything the radiologist did.

    Hemangioma should always
    Hemangioma should always bring a smile to your face. The answer to your question is yes. If the radiologist is calling it an enhancing lesion then it is. MRI is usually used to confirm after CT. MRI without and then with gadolinium injection is usually the end of testing. The only way to make more sure would be a CT guided biopsy. I've done hundreds with my Radiologists. A little painful, lots of waiting time lying on your stomach waiting for the speciman to go to the lab for quick results and I'm guessing that the first urologist was just talking.(Hence the word "Could"). Partial nephrectomys are so routine today. I can't tell you not to be scared, but mine was the same size and laparoscopicly it was a breeze. Hope it goes well and fast for you. Worst part has to be the wait.
    Jeff
  • brea588
    brea588 Member Posts: 240

    Hemangioma should always
    Hemangioma should always bring a smile to your face. The answer to your question is yes. If the radiologist is calling it an enhancing lesion then it is. MRI is usually used to confirm after CT. MRI without and then with gadolinium injection is usually the end of testing. The only way to make more sure would be a CT guided biopsy. I've done hundreds with my Radiologists. A little painful, lots of waiting time lying on your stomach waiting for the speciman to go to the lab for quick results and I'm guessing that the first urologist was just talking.(Hence the word "Could"). Partial nephrectomys are so routine today. I can't tell you not to be scared, but mine was the same size and laparoscopicly it was a breeze. Hope it goes well and fast for you. Worst part has to be the wait.
    Jeff

    rcc
    thanks for ur comments. T he waiting time is awful would rather go on and get it done lol. I have Copd asthma and decreased lung function so that is why im more anxious. My Pulmonologist in going in surgery with me to keep airways open during surgery. How long was your recovery time. Much pain involved. I have a high tolerance to pain most the time. I am a registered nurse and we just make the worse patients ever lol. Have seen too much and know too much. Sometime ignorance is bliss lol. thanks again
  • MedScanMan
    MedScanMan Member Posts: 107
    DMike said:

    Welcome
    Hi Jeff,
    I'm sorry you have to be here because of RCC but your presence will be very educational and beneficial to us.
    A couple of questions...First I think I know the answer to this after reading your earlier posts. I'm probably dense but I thought the preliminary action before the contrast injection was purely calibration (no one told me this I just thought this was the case) but now I believe those are the non-contrast scans you mention. Is that correct?

    2. On my last CT scan the doctor ordered abdomen, thorax and pelvic scans. The scan stopped at the top of my hip, shouldn't a pelvic scan show more than that?

    Thanks for your help, David

    Yes. Non contrast films of
    Yes. Non contrast films of the abdomen are very important to compare. The Thorax as you say would be a CT scan of the chest (Lungs). A CT of the Abdomen alone would stop at the top of your hip. Usually 2-3 cm below the iliac crest. The bone you feel on your side about inline with your belly button. If that's where the scan stopped then you did not have the pelvis done. The pelvis would have taken the pictures past the bladder filled with contrast to the end of the pelvic bone. Not going to get fancy here with anatomy. Can I ask you how you know that the technologist stopped at the top of your hip....as you call it? If it's because he or she was poking you there before the scan, it's a place we use to measure. It's a place the laser light goes so we know where you are.
    Jeff
  • foxhd
    foxhd Member Posts: 3,181 Member
    DMike said:

    Welcome
    Hi Jeff,
    I'm sorry you have to be here because of RCC but your presence will be very educational and beneficial to us.
    A couple of questions...First I think I know the answer to this after reading your earlier posts. I'm probably dense but I thought the preliminary action before the contrast injection was purely calibration (no one told me this I just thought this was the case) but now I believe those are the non-contrast scans you mention. Is that correct?

    2. On my last CT scan the doctor ordered abdomen, thorax and pelvic scans. The scan stopped at the top of my hip, shouldn't a pelvic scan show more than that?

    Thanks for your help, David

    welcome Jeff
    Welcome Jeff. Boy, you got the full initiation pretty quickly. Thanks for offering your knowledge and expertise. Fox
  • MedScanMan
    MedScanMan Member Posts: 107
    brea588 said:

    rcc
    thanks for ur comments. T he waiting time is awful would rather go on and get it done lol. I have Copd asthma and decreased lung function so that is why im more anxious. My Pulmonologist in going in surgery with me to keep airways open during surgery. How long was your recovery time. Much pain involved. I have a high tolerance to pain most the time. I am a registered nurse and we just make the worse patients ever lol. Have seen too much and know too much. Sometime ignorance is bliss lol. thanks again

    My recovery time was three
    My recovery time was three days. Normal surgical pain. Second night, after dinner.....two vicodin and an hour later walking around the nursing station with the Ivac. Minimal post op antibiotics, nothing fancy and home at the end of the third day, not counting surgery. With all these extra doctors monitoring you, you'll do fine. You're an RN..............Who's better than you!
  • MedScanMan
    MedScanMan Member Posts: 107
    foxhd said:

    welcome Jeff
    Welcome Jeff. Boy, you got the full initiation pretty quickly. Thanks for offering your knowledge and expertise. Fox

    Thanks for the welcome Fox.
    Thanks for the welcome Fox. I've been reading your posts for a couple of weeks now. Everyone actually. I didn't just jump in. The interaction here was great and I wanted to be a part of it. Glad you're doing well!