Complex Renal Cyst - New Member

Unfortunately, they can't diagnose kidney cancer without putting the material from the thing under a microscope. Negative biopsies are not conclusive (the kidney is very difficult to biopsy, and these cysts are rarely uniform). I don't know they'll find anything new from the MRI. In most cases from reading people's experience on here, the standard is a CT with/without contrast and not an MRI. Often an MRI is not even done. There've been some threads previously where we discussed by a CT is superior to an MRI with this kind of cancer. There are some reasons. I'm afraid I don't remember!

I hope it's just a cyst. How large is it? The larger it is, the more likely it is RCC. My urologic oncologist said that 90% of these large, complex cysts are RCC.

Well, I hope you get good news and you don't have to join us.

You might get your hand on the CT if you had one. It will tell you the size.

If you can find a urologic oncologist with experience with RCC, that would be your best approach.

Regards,

Todd

todd121 said:

Imaging and complex cysts

Unfortunately, they can't diagnose kidney cancer without putting the material from the thing under a microscope. Negative biopsies are not conclusive (the kidney is very difficult to biopsy, and these cysts are rarely uniform). I don't know they'll find anything new from the MRI. In most cases from reading people's experience on here, the standard is a CT with/without contrast and not an MRI. Often an MRI is not even done. There've been some threads previously where we discussed by a CT is superior to an MRI with this kind of cancer. There are some reasons. I'm afraid I don't remember!

I hope it's just a cyst. How large is it? The larger it is, the more likely it is RCC. My urologic oncologist said that 90% of these large, complex cysts are RCC.

Well, I hope you get good news and you don't have to join us.

You might get your hand on the CT if you had one. It will tell you the size.

If you can find a urologic oncologist with experience with RCC, that would be your best approach.

Regards,

Todd

I am so sorry that you received this news. I know it can be very stressful, but the more information you have, the better. Get a copy of your report and go from there.

That being said, try not to worry (not so easy I know). If it is caught early you will sail through this!

We know what you are going through....post here as often as you need to - we are here for you!

Hugs

Jojo

donna_lee said:

Waiting for results...

can be the worst part, sometimes.  And it depends upon the facility.  Some have an onsite Radiologist who can read and intrepret the pix ASAP and have them to the Dr. by later in the day.  Many are like my facility; With pre-and post hydration (to help my remaining kidney pass the dye easier) my CT is usually about noon, and a week later I see either the Oncologist, Onc. Nurse Specialist to receive the results.  That allows time for the Rad. to interpret the scan and get the results to the Drs, office before my appointment.

An MRI takes thinner slice pix than a CT.  Kind of like slicing vegies on a Mandolin-thick carrot rounds or thin ones.

And ask questions, get copies of reports and lab results.  How large is the complex cyst as interpreted by the Radiologist?  What makes it a complex cyst as opposed to a "simple" cyst?  Your primary should refer you to an oncologist; and make sure all labs, copies of tests, and readings are transferred to that Dr. before you get there.

Find out if there is a Patient Navigator, who can help you understand the paperwork, facilitate the set-up of appointments and tests, and be a coach and friend through this process and beyond.

Hope this gives you enough info to get started on your journey to diagnosis and recovery from what ever may be recommended.

I thought I might have a gall stone, which prompted me to mention the nausea and vomiting when I saw my new PC Doc.  He ordered and ultrasound, which found the kidney mass, the liver mass which was causing the symptoms, and my journey began there.

Best Wishes, and keep us posted on this discussion board.

donna_lee

I just had a ct and mri done and they both said something a little different.  Mine never showed up on the ultrasound.  I am having a doppler ultrasound done this coming week prior to surgery to help the dr navigate I am guesssing.  The ct said lesion that could represent rcc.  Mri said could represent complex cyst or complex maligant cyst. Dr is talking to the radioloigist prior to surgery 2/16.  I have wondered too which would be better.

So I am guessing that they won't really know till its out and can be look at it. 

I did collect all the reports and cd for everything I have had in the last 3 yrs and took to the dr appts.  Always good to have them.

Best Wishes,

KIm

hardo718 said:

We're here for you Laurie

Stressful time to be sure.  Like many have said, get your reports so you can take them with you to appointments.  I would suggest a second opinion as well.  I was told by my doctors that CT's with contrast are the gold standard, but then maybe there are other reasons to do MRI as well.  That's a pretty strong family history you've got there.  The upshot is that progress has grown by leaps and bounds in recent years in regards to renal cancers.  Try to stay away from internet searches if possible, they can scare the crap out of you!  This forum can probably provide you with the most updated info.

I will keep you in my prayers.

Donna~

They can indeed scare the crap out of you, mainly because the science is moving so fast. We all hope its not cancer, but even if it is medicines and treatments are coming on line which will turn Cancer from a fatal disease to a chronic condiion.

The CT scan is a bit of a cake walk, I rather enjoy them, I dont even mind the contrast. I think you just take it one step at a time and see where you are at the end of the day.

Good luck with the scan, may you have the results you want

Hi...I had a CT and an MRI and they both showed the same results. My doctor called with the results within 24 hours. Mine was a 6 cm Stage 1 tumor. I had a nephrectomy May 2014 and have been cancer free since.  Sending positive vibes your way....Keep us posted. We are here for you...Panda

lbmiller77 said:

Thank you

Thank you for the responses. The waiting has been awful and talking to my uncle about his experiences has not put me at ease. Our paths seem to be running parallel but I'm hoping to get some luck on my side. I guess I will know more in the next week. I will post the details when I get them.

First of all, Laurie, I am so sorry you are going through all this pain, surgery and such.

BUT my primary also did a MRI and it was a waste of time because my Urologist/surgeon wanted a CT.

So why don't you get a Urologist first?  And go from there.

Let us know what happens and how you are doing.

We'll walk along side you through all this if you want us to.

Gentle hugs, Jan

Laurie,

If you have that much kidney cancer in your family (were those all blood relatives?), you really might want to find a specialist that understands genetic kidney cancer. They've done a ton of studies of genetic kidney cancer at NIH and they really know about this disease and how to handle it. It's a different animal than what most of us have.

Please look into finding a specialist that at least can talk to someone that does research on genetic kidney cancer. You may want to get tested and talk to someone before you do any treatments. I've heard they have the best handle on this type of kidney cancer compared to others at NIH because they've done so much work on it.

I wish I had a name or names for you, but I don't. If you ask here on the board, perhaps someone can give you a name. A medical oncologist with specialization in RCC should know how to get you tested to see if you have genetic kidney cancer and who to get in touch with. It "may" be worth it. If you happen to have genetic kidney cancer, you may even be able to find out if this is likely RCC before having the surgery (it would depend on the types of mutations you have, if any).

Best wishes,

Todd

lbmiller77 said:

MRI Results

The results are in... the mri showed slight enhancements in the cyst and a second nodule on my liver. They think the nodule on my liver is benign. They downgraded my diagnosis from Bosniack III to IIF and have scheduled a second MRI for August 8th, 6 months from now. My primary said if it shows signs of growth, they will deal with it then. I was somewhat relieved at first but my uncle is really pushing me to get a second opinion from a specialist (my primary has soley  been working with me on this) since I'm still experiencing nausea, and pressure in my upper abdomen and lower back. He feels that with our family history, it just needs to be removed. I'm a little less inclined to remove a kidney for what sounds like a 50/50 shot that it is cancer. I don't see any harm in getting a second opinion so I will probably follow through with that advice. Thank you again for all the support. I really don't feel like I can talk to my immediate family about all of this and appreciate having people to talk to who have been down this road.

I don't think that with a small growth like that you would have the entire kidney removed. It would most likely be a partial with the majority of your kidney preserved. Of course that depends on location but I doubt you'd lose an entire kidney for a 2.2 cm growth. I tend to agree with your uncle in that a specialist should be looking at it. No matter how good your PCP is, it's not his specialty. So it's a good thing that you're considering a second opinion.