Kidney Mass discovered

Elbay
Elbay Member Posts: 10
in Kidney Cancer #1

I'm 38 y/o female. Was in the hospital for a complex UTI that ran up into my kidney and they did a CT Scan w/ contrast on me. I was told that I have a cyst (1.2 cm) and that I should have a follow up done. Before being discharged from the hospital the Dr wanted me to get a ultrasound to get a closer look at the cyst.  The ultrasound tech couldn't find the cyst.

I went to a neprhologist who wanted me to get another CT scan w/o contrast - no cyst was found.  Based on the results because it lit up with enhancement she referred me to a urologist because there's a possibility that the cyst could be malignant.

Went to urologist this morning. Based on the results he says I have a mass which could be cancerous, may not be cancerous. Lucky for me, he says, it's very small.  He recommended that I wait 3 months and do an MRI w/ and w/o contrast to see if the mass grows.  What complicates things is that I have a single kidney (the other kidney no longer works due to silent UTIs my whole life) - so dr. wants to be conservfative careful before he opens me up or performs a biopsy.  He also said that the mass is not in an ideal place for easy removal (inside my kidney).

I do have a second opinion appointment at the Cleveland Clinic  (lucky for me I live in Northeast Ohio).  The fact that I only have a single working kidney concerns me. Trying not to freak out.  

Comments

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #2
    Welcome, Elbay!

    You have come to a great place to be given your situation. And your situation sounds complicated! I am glad you are going for a second opinion - Cleveland Clinic is supposed to be top notch! And if necessary, go for a third opinion! Gather as much information as you can before you make a decision.

    It will be a long 3 months' wait for you. We will be here if you need any support at all. Please do not hesitate to reach out to us!

    And please keep us posted on any developments!

    Hugs

    Jojo

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #3
    Dont freak out!

    I've been running on one kidney for years. Get your second opinion and keep us informed. Good luck:-)

  • todd121
    todd121 Member Posts: 1,448 Member
    #4
    Cysts

    Small cysts are pretty common. How small is small? You didn't mention the size.

    The CT with contrast and compared to no contrast is the best method of looking at the cyst. I don't understand the idea of doing an ultrasound after a CT to get a better look. The ultrasound is less accurate. That's odd.

    Since you have one kidney, it seems to make perfect sense to wait and see. These primary tumors (if it is one) generally grow slow. Another consideration is the location of the tumor. Where was it located? You may be able to have a partial if it is small and located well away from the center of the kidney. That would be great.

    Do you know your current kidney function? What's your creatinine level and/or GFR?

    I hope it's just a typical benign cyst and not cancer.

    Best wishes,

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    #5
    todd121 said:

    Cysts

    Small cysts are pretty common. How small is small? You didn't mention the size.

    The CT with contrast and compared to no contrast is the best method of looking at the cyst. I don't understand the idea of doing an ultrasound after a CT to get a better look. The ultrasound is less accurate. That's odd.

    Since you have one kidney, it seems to make perfect sense to wait and see. These primary tumors (if it is one) generally grow slow. Another consideration is the location of the tumor. Where was it located? You may be able to have a partial if it is small and located well away from the center of the kidney. That would be great.

    Do you know your current kidney function? What's your creatinine level and/or GFR?

    I hope it's just a typical benign cyst and not cancer.

    Best wishes,

    Todd

    By the way...

    My urologist has a great website describing all the different kinds of kidney masses and what can be done about them, and their frequency, how fast they grow, etc.

    Highly recommended if you want a crash course in kidney masses and kidney cancer.

    http://www.kidneycancerinstitute.com/

    Todd

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #6
    todd121 said:

    By the way...

    My urologist has a great website describing all the different kinds of kidney masses and what can be done about them, and their frequency, how fast they grow, etc.

    Highly recommended if you want a crash course in kidney masses and kidney cancer.

    http://www.kidneycancerinstitute.com/

    Todd

    Cleveland Clinic

    Elbay,

    Your choice of the Cleveland Clinic is as high up the food chain as you can get. They are the training ground for many of the top Kidney Cancer surgeons in the country. They will find a way if anyone can to resolve your issues. Sending Karma from across Lake Erie and from SE Michigan to help you on this journey.

     

    Icemantoo

  • Allochka
    Allochka Member Posts: 1,072 Member
    #7
    icemantoo said:

    Cleveland Clinic

    Elbay,

    Your choice of the Cleveland Clinic is as high up the food chain as you can get. They are the training ground for many of the top Kidney Cancer surgeons in the country. They will find a way if anyone can to resolve your issues. Sending Karma from across Lake Erie and from SE Michigan to help you on this journey.

     

    Icemantoo

    Good luck with the second

    Good luck with the second opinion!

    having unclear mass in kidney does make you nervous, of course. but it is very, extremely small right now, you are not in imediate danger even if malignant.

    finding a good doctor is the most important thing!

  • APny
    APny Member Posts: 1,995 Member
    #8
    Allochka said:

    Good luck with the second

    Good luck with the second opinion!

    having unclear mass in kidney does make you nervous, of course. but it is very, extremely small right now, you are not in imediate danger even if malignant.

    finding a good doctor is the most important thing!

    "The CT with contrast and

    "The CT with contrast and compared to no contrast is the best method of looking at the cyst. I don't understand the idea of doing an ultrasound after a CT to get a better look. The ultrasound is less accurate. That's odd."

    Sloan Kettering did the same with me. CT identified the growth, and oncologist ordered the US to verify it. I think a lot depends on the equipment itself and the skill and expertise of the techinicians and radiologists. My last US in March picked up a cyst under 1 cm on my kidney which we're now monitoring, so it's not what I would call insensitive. But still, everyone should have the follow up they're most comfortable with and of course it all should depend on stage and type of cancer.

    Best of luck and I think you'll be in good hands at Cleveland Clinic. It's one of the best places for kidney cancer. Sorry you had to join our "club" but you'll get a lot of great info and support here. Yes, please keep us informed.

  • myoung790
    myoung790 Member Posts: 75
    #9
    Good luck and keep us posted.

    Good luck and keep us posted.  

    My tumor was inside the kidney and small.  I did wind up losing the whole kidney, but mine wascentral and pushing up on the renal hilum.  The risks were too great for infection and urine leakage.  We went in with the idea of doing a partial, but had to convert to a nephrectomy.

     

  • Elbay
    Elbay Member Posts: 10
    #10
    myoung790 said:

    Good luck and keep us posted.

    Good luck and keep us posted.  

    My tumor was inside the kidney and small.  I did wind up losing the whole kidney, but mine wascentral and pushing up on the renal hilum.  The risks were too great for infection and urine leakage.  We went in with the idea of doing a partial, but had to convert to a nephrectomy.

     

    Many thanks!

    Thank you all for your supportive words and insight on your experiences. I find comfort in the fact that (a) whatever they found is very small (1.2 cm); and (b) I am going to Cleveland Clinic tomorrow. It's the not knowing that's the most frustrating. 

    But feeling much more zen about it today. I'll keep you all posted!

  • Elbay
    Elbay Member Posts: 10
    #11
    todd121 said:

    Cysts

    Small cysts are pretty common. How small is small? You didn't mention the size.

    The CT with contrast and compared to no contrast is the best method of looking at the cyst. I don't understand the idea of doing an ultrasound after a CT to get a better look. The ultrasound is less accurate. That's odd.

    Since you have one kidney, it seems to make perfect sense to wait and see. These primary tumors (if it is one) generally grow slow. Another consideration is the location of the tumor. Where was it located? You may be able to have a partial if it is small and located well away from the center of the kidney. That would be great.

    Do you know your current kidney function? What's your creatinine level and/or GFR?

    I hope it's just a typical benign cyst and not cancer.

    Best wishes,

    Todd

    When this all started they

    When this all started they just said "cyst" and I was just going where I was told and getting whatever tests I was told to get. In fact, after the inconclusive ultrasound, a nephrologist wanted to send me for another ultrasound, which the ultrasound tech balked at, then they finally sent me for the non-contrast CT Scan. Here I am today.

     

     

  • todd121
    todd121 Member Posts: 1,448 Member
    #12
    myoung790 said:

    Good luck and keep us posted.

    Good luck and keep us posted.  

    My tumor was inside the kidney and small.  I did wind up losing the whole kidney, but mine wascentral and pushing up on the renal hilum.  The risks were too great for infection and urine leakage.  We went in with the idea of doing a partial, but had to convert to a nephrectomy.

     

    Location, Location, Location

    Besides size, location is also quite important. Sometimes I think we forget about that.

    Mine was not very small at 6.7 cm (under 7 cm), but it was also centrally located. The location is what ended up moving me from Stage I to Stage III, because the center of the kidney is where all the blood supply enters/exits the kidney. So my tumor had infiltrated some of the blood vessels, therefore Stage I pre-nephrectomy turned into Stage III post pathology. Also, it's what blocked me from doing the partial. They have better luck with partials the further the tumor is away from the main blood supply (center of the kidney). I got quite the shock when I got my pathology back. I was still sort of hoping it was some kind of benign mass, but even if it wasn't I was thinking I was going to be Stage I. Then I got my pathology report back, and it was cancer AND Stage III and Grade 3 (aggressive).

    Todd

     

  • Elbay
    Elbay Member Posts: 10
    #13
    Well

    I went to CC. Beautiful facility, but I didn't get a good vibe from Dr. Andrew Stephenson.  He sent me for yet another CT Scan and based on the results only told me that "the area of concern [in my kidney] is too small to warrant surgical intervention at this time".. and that I could come in if to discuss it with him further. I am waiting to see what this means. Is this a complex cyst?  Suspicous that it looks malignant? Will no one tell me. I'm waiting to hear back. UGH. 

     

    Although CC is supposed to be the best in the world. if this CC doctor ends up telling me what the first doctor told me (watchful waiting), I'm just going to stick with the first doctor, because I got a better feel for him.

  • jrzgrl66
    jrzgrl66 Member Posts: 21
    #14
    todd121 said:

    By the way...

    My urologist has a great website describing all the different kinds of kidney masses and what can be done about them, and their frequency, how fast they grow, etc.

    Highly recommended if you want a crash course in kidney masses and kidney cancer.

    http://www.kidneycancerinstitute.com/

    Todd

    website

    Thank you Todd for posting this. I too will be reviewing this information. At a quick glance, it looks very informative! Laughing

  • todd121
    todd121 Member Posts: 1,448 Member
    #15
    Elbay said:

    Well

    I went to CC. Beautiful facility, but I didn't get a good vibe from Dr. Andrew Stephenson.  He sent me for yet another CT Scan and based on the results only told me that "the area of concern [in my kidney] is too small to warrant surgical intervention at this time".. and that I could come in if to discuss it with him further. I am waiting to see what this means. Is this a complex cyst?  Suspicous that it looks malignant? Will no one tell me. I'm waiting to hear back. UGH. 

     

    Although CC is supposed to be the best in the world. if this CC doctor ends up telling me what the first doctor told me (watchful waiting), I'm just going to stick with the first doctor, because I got a better feel for him.

    Single Kidney

    Because you have a single kidney, they are going to be very conservative. This is a small mass. Watching/waiting is a valid approach that docs use on a small mass, but in your case I'd bet you'll find most specialists in agreement. Is Dr Stephenson a urologic oncologist? Or a urologist? Or a medical oncologist specializing in RCC? Because of your situation, you want the best opinion you can get. Even if you don't like him, I'd stick with him if he's the best specialist. Being at a place that has radiologists that see a lot of cancer is good.

    Did you send them copies of the other CT's on disc? If you did, I don't understand why they would do another CT? Usually a good specialist will want all your records and copies of all pathology and films (CT, Xray, ultrasound, etc) before they see you so they can review them.

    I'd want a urologic oncologist or medical oncologist with RCC experience following me in your situation. The more RCC patients they see, the better. It's not a common cancer and the field is changing constantly, so you want someone that is going to conferences, reading literature, and maybe even doing research themselves, so they are up-to-date on the latest advances.

    Todd

  • Elbay
    Elbay Member Posts: 10
    #16
    todd121 said:

    Single Kidney

    Because you have a single kidney, they are going to be very conservative. This is a small mass. Watching/waiting is a valid approach that docs use on a small mass, but in your case I'd bet you'll find most specialists in agreement. Is Dr Stephenson a urologic oncologist? Or a urologist? Or a medical oncologist specializing in RCC? Because of your situation, you want the best opinion you can get. Even if you don't like him, I'd stick with him if he's the best specialist. Being at a place that has radiologists that see a lot of cancer is good.

    Did you send them copies of the other CT's on disc? If you did, I don't understand why they would do another CT? Usually a good specialist will want all your records and copies of all pathology and films (CT, Xray, ultrasound, etc) before they see you so they can review them.

    I'd want a urologic oncologist or medical oncologist with RCC experience following me in your situation. The more RCC patients they see, the better. It's not a common cancer and the field is changing constantly, so you want someone that is going to conferences, reading literature, and maybe even doing research themselves, so they are up-to-date on the latest advances.

    Todd

    Thank you. I guess I'll just

    Thank you. I guess I'll just wait to get that MRI at the end of July to see what it shows (like first doc suggested).  If it increases in size and first Dr wants to operate I can decide then what/which Dr. to choose. Dr. Stephenson is a urologic oncologist (good looking I might add). Still, his bedside manner was more minuteman than ironman.  According to CC CT Scan the CNP said that it is still indeterminate whether the kidney "lesion" is malignant or not. First this was a cyst, then mass, now lesion. Ugh I can't keep up with all the terminology.  I've asked for them to send me a copy of the scan along with the report--which I should be getting soon.

    Can't tell you why he wanted me to get another CT Scan. he said this one he was ordering was somehow different - bilateral something or other. I know that the first CT Scan w/ enhancement I got because they thought my appendix burst and didn't just focus on my kidney.

    Long story short, I'm no longer going to worry about this until I absolutely have to.  Yes I want the best care, but 2 opinions are all my nerves can take at this point!!

    Watchful waiting is the worse thing for an impatient girl like me!

     

     

  • debynash
    debynash Member Posts: 5
    #17
    todd121 said:

    Location, Location, Location

    Besides size, location is also quite important. Sometimes I think we forget about that.

    Mine was not very small at 6.7 cm (under 7 cm), but it was also centrally located. The location is what ended up moving me from Stage I to Stage III, because the center of the kidney is where all the blood supply enters/exits the kidney. So my tumor had infiltrated some of the blood vessels, therefore Stage I pre-nephrectomy turned into Stage III post pathology. Also, it's what blocked me from doing the partial. They have better luck with partials the further the tumor is away from the main blood supply (center of the kidney). I got quite the shock when I got my pathology back. I was still sort of hoping it was some kind of benign mass, but even if it wasn't I was thinking I was going to be Stage I. Then I got my pathology report back, and it was cancer AND Stage III and Grade 3 (aggressive).

    Todd

     

    Todd, my 5-cm tumor is

    Todd, my 5-cm tumor is central as well. Having my open partial (probably will turn into a full while I am on the table) on June 23. The catch for me is that it is my only kidney. Dreading the thought of dialysis on top of this RCC diangosis...grrr

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