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Complex Renal Cyst - New Member

lbmiller77
Posts: 9
Joined: Jan 2016

Where to begin??

The last few months I've been experiencing bouts of nausea and itchy hands and feet. On December 8th, I started experiencing a lot of pressure in my upper right quadrant. I felt like I had a pillow jammed up under my rib cage. It wasn't painful but it was certainly uncomfortable. The following day, my primary diagnosed me with having gallstones (no blockage) after performing an ultrasound. I had my gallbladder removed on December 15th. Since the surgery, my symptoms have persisted. On Jan 7th, I was rushed to the hospital after feeling something pop and experiencing extreme pain. While performing a CT with contrast, they discovered a "significant cyst-like mass" on my right kidney. The doctors felt that the cyst on my kidney wasn't related to the pain I was experiencing and felt the pain was the result of me blowing out some internal stiches from my gallbladder surgery. They released me from the hospital a few days later but recommended that I follow up with my primary as soon as possible for my kidney. I finally got in to see her this past Monday and she informed that I have a large complex renal cyst and need to get a MRI with and w/out contrast done. Unfortunately I didn't ask what her definition of large is and the word "cyst" sounded so benign to me that I wasn't concerned until I started to look it up. My family has had three known cases of kidney cancer (aunt, uncle, and grandfather all on my mother's side of the family), two of which were diagnosed in their early 40's. I'm 38. Needless to say, the panic is starting to settle in. My MRI is scheduled for Tuesday. Wouldn't the doctor be able to tell if the cyst had malignant features from the CT scan? What would an MRI show that the CT won't? Was the radiologist able to confirm your diagnosis while you were in the office or did you have to wait for your results? My head is so full of questions and anxiety, I cannot concentrate at work. Deep breath.....

 

Laurie

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

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

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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's picture
donna_lee
Posts: 962
Joined: Feb 2009

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

daisybud's picture
daisybud
Posts: 490
Joined: Jan 2016

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

icemantoo's picture
icemantoo
Posts: 3278
Joined: Jan 2010

Laurie,

 

 

Welcome to the club which no one in their right mind would volunteer to join. Please find out and post the size of your complex cyst so that I do not respond inappropriately.

 

Icemantoo

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

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~

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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

db8ne1's picture
db8ne1
Posts: 142
Joined: Feb 2013

Laurie,

Sorry you have to be here - but welcome, anyway.

My urologist prefers CT (with and without contrast) - but my cancer kidney surgeon (different hospital) prefers MRI's (with and without).  So, I think it depends on the doc...

Me and my urolgist watched my "complex cyst" grow for about 18 months before I went in for a partial nephrectomy.  Stage 1 RCC.  However, during that 18 months I was undergoing radiation/surgery/follow-up chemo for Stage 3 Colorectal cancer - so the RCC wasn't really a priority.  

Urologist said the only way to confirm malignancy was to operate, remove it, and look at it under a microscope.  That said, he also noted that "if it grows, it's cancer and it should be taken out".

Not that I am a doc - but anything under 4 cm is generally considered Stage 1 and stats show 90%+ cure rate with surgery.

Best of luck.

Keep us posted.

J

Pandabear1011
Posts: 123
Joined: Jun 2014

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
Posts: 9
Joined: Jan 2016

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.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

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

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Lauri, I'm so sorry you are going through all this, the waiting is the worst part, I know. I was diagnosed at 36. means 1.5 year ago, since the surgery which they had to remove my right kidney and a confined 10 cm tumor ,I'm NED.

The best choice for renal cancer is C.T scan, they don't use MRI unless the patient can't tolerate the contrast, so as Jan said I think is's good idea to talk to an urologist with kidney cancer expertise. Meanwhile don't lose your hope, we had some patients who found the tumor was benign afyer the pathology report.

Forough

 

 

lbmiller77
Posts: 9
Joined: Jan 2016

After a few calls to my primary, I finally convinced a nurse to read me a summary of the report. She said the note on the summary stated "indeterminate 2.2 cm complex renal cyst located on mid-lateral right kidney. Further evaluation needed." According to my research and talking to others, I'm hoping the size will work in my favor. I'm assuming they would rate this as a II or IIF on the Bosniack Scale which yields a good chance that this is not malignant.....at least that's what I'm telling myself. MRI is at 2:45 today. 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Its a tiny little thing. Get it removed and continue with life as before

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

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
Posts: 9
Joined: Jan 2016

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.

APny's picture
APny
Posts: 1987
Joined: Mar 2014

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.

lbmiller77
Posts: 9
Joined: Jan 2016

The primary told me that it being midlateral would not make me a good candidate for ablation or partial neph. Is that wrong? I would love for her to be wrong because if this thing needs to be removed, I would much rather preserve my kidney.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

So, Laurie, you have not been referred to a Urologist/surgeon for this right?

If this were me, I would go ahead and get the Urologist's opinion.

He/she may want a Ct first.

I would not wait 6 months to do this. It may only be a cyst, but if its not,

with your family history, I know an Urologist would want to consult with you.

What do you think? 

Jan

lbmiller77
Posts: 9
Joined: Jan 2016

Thank you Jan, I had the CT done on Jan 7th which is what sent me down the rabbit hole. The radiologist who read the CT rated the cyst as Bosniack III. My primary requested an MRI to clarify the findings.  A second radiologist looked at the CT results and the MRI and downgraded the cyst to IIF. I have an appointment scheduled with an urologist for Tuesday morning to get a second opinion. A number of people have expressed their fears about me waiting six months and it has me worried. I've read medical journals that said only 14% of those categorized IIF who have follow up MRI/CTs end up seeing growth in 6 months. I thought those were excellent odds and it has brought me some comfort. What are the chances that a small cancerous lesion spread and/or metastisize in 6 months? Thank you for the response,

 

Laurie

APny's picture
APny
Posts: 1987
Joined: Mar 2014

No offense to your primary who may be terrific but he/she is not an expert on kidney surgery. We’ve had people on here (Positive_Mental) who was told by his urologist that the whole kidney has to go. But he found a urologic oncologist surgeon (who was mine as well) who specializes in partials and the majority of his kidney was saved. As was mine. That is why it’s important that you see not just a urologist but one who specializes in kidney cancers and nehphrectomies, especially partials. Many urologists just treat UTI and prostate issues and have no clue when it comes to kidney surgery. Others are not skilled or experienced enough to do a partial, which is more complext surgery. It may very well turn out that you do need a complete in order to remove it because of its position but it’s definitely worth looking into it via an expert and go by their opinion.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I would really want the opinion of a urologic oncologist (at least) possibly a medical oncologist. Either with RCC experience would be recommended. My urologic oncologist told me for my cyst (and I've heard this from others on here) that imaging alone could not tell if it's cancer or not. With your history, getting genetic testing would also be a good idea. There's no downside to getting the genetic testing that I can think of.

Perhaps your cyst is different than most of ours...or maybe the people you're seeing don't know kidney cancer that well.

They don't do ablation for indeterminate cysts. Because they need to know if it's cancerous or not for a prognosis/followup care. Ablation destroys the cyst. They need to have it under a microscope to tell definitely what it is.

Of course take what I say with the understanding I'm not a doctor!

Find a urologic oncologist (at least) preferable with RCC experience/training to make your decisions about following it or surgery. I wasn't a candidate for a partial either because my mass was in the center of the kidney, but my mass was 6cm.

How can they tell about the liver lesion without biopsy? I just wouldn't trust anyone without RCC experience. It's a rare(r) cancer and not seen often by these other specialists.

Best to you,

Todd

lbmiller77
Posts: 9
Joined: Jan 2016

Thank you for mentioning the genetic testing. I was thinking the same thing when I started researching the rates of kidney cancer when the patient has multiple first and second degree relatives with RCC. The study was done in Iceland and showed that 60% of RCC patients had at least one first degree or second degree relative who had RCC. The study also showed that if familial etiology is a factor, the patient experienced onset at a young age (median age was determined to be 37). It was rather unsettling to read this. I'm starting to create a list of questions for the the urologist and I will make sure to ask about the genetic testing and making an appointment for urological oncologist. Someone else suggested seeking out a uroradiologist to read my CT and MRI and that will also be making the list.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I want to keep emphasizing I'm not a doctor. I'm just sharing what I've learned from talking to some and going to some seminars, etc.

Genetic RCC is not at all common. I was told by a specialist in genetic cancer, that 90% of cancers are not inherited cancers. They are from mutations to genes during life and don't come from the parents. So I'm puzzled by your Iceland study.

Most of us do not have inherited RCC.

As I've said before, they've done a lot of research on inherited RCC at NIH and they have a very good handle on this disease. If you turn out to have that type, you really want to loop those people in. It's a different disease altogether than what the rest of us have. I heard a doctor that studies this say that they have quite a good track record treating this kind of cancer possibly even without removing the kidney. (And I think this depends on the type of genetic RCC. There are many types of both inherited and non-inherited RCC).

One trick to finding a specialist that is interested in RCC, is to look for RCC trials in your area. The national list of drug trials and studies lists a contact person for all those studies. Those people are usually people tied into RCC research. They will be connected with other specialists interested in it. Call them up and see what kind of doc they are (usually a urologist, urologic oncologist, or a medical oncologist) and ask to see them or for a referral.

You can also just post a question here telling the area you live in and other people here will tell you where you might go. National Cancer centers are a good place to look if you are near one. University medical schools often have people.

Hugs,

Todd

 

lbmiller77
Posts: 9
Joined: Jan 2016

Thank you for clarifying this. I saved the webpage that contained the study. Maybe I miss read something.

I live in Wisconsin and reached out to the University of Wisconsin Carbone Cancer Center this morning to see if they could point me in the right direction. If anyone else has any suggestions, I would greatly appreciate it.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I think I've heard mention of that cancer center here. Maybe somebody who lives near there can make a suggestion?

Hope you get it resolved soon and it's in your favor. Would love to have you not have to stick around here. :)

Todd

lbmiller77
Posts: 9
Joined: Jan 2016

I saw the urologist this morning and we spent sometime talking about why they downgraded me from a III to a IIF. He said he still sees far more benign features than malignant features.  He wants MRIs done every 6 months for the next 5 years to check for changes in complexity and density. I am so relieved and glad he took the time to answer my questions. I just wanted to say thank you to all of whom responded to my questions and wish you all better health.

 

Laurie

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Well, Laurie, that is good news!!

From what I know, RCC is slow growing and usually contained.

So for now, let this go and live your life!!

Keep us informed. It was "nice to know you."

Hugs my dear..now breathe...breathe..

Jan

kowal37
Posts: 1
Joined: Jul 2016

I have a semi complex 4.5 cm cyst on my right kidney,  which is causing pain.  The urologist answer is to wait a year and rescan it, and that he doesn't believe the cyst is the cause of my pain.  I'm in the Kaiser network and think I should have a second opinion. Any thoughts,  suggestions? 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Definitely get a 2nd opinion!!  Try to find a urologic / oncologist. 

I also had discomfort, and that's what sent me to the doctor originally.  I wouldn't really refer to my discomfort as pain, but whenever I rolled to my left side while sleeping it felt like I was rolling over onto a tennis ball and it would wake me up.  That was going on for a few weeks when I decided to see my doctor.  I was told that this is sensation is not that unusual and it typically will happen during the growth phase of the mass.  The growth phase, I was told, is usually about 6 weeks long and then goes dormant for a while, etc.  I received kudos from my doctors for being so in tuned with my body.

So, my suggestion to you is to move on.  Find another doctor, a specialist in kidney cancers.  Good luck.  (not sure where Kaiser is)

Donna~

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