CSN Login
Members Online: 3

You are here

Recent CT scan shows 5.2 cm mass on right kidney

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Hello everyone.  I have an appointment with the Urologist next Tuesday to begin the work up process, diagnosis process on a 5.2 cm mass.  Some background:

Had a disc fusion about 5 weeks ago, recovered and went back to work part time.  Boss was sick when I went back so when I developed body aches, chills, and a fever of 101 on a Wednesday, I assumed I had caught his bug.  The following Saturday, I began passing blood in my urine.  Serious pain in the right flank and then blood clots in the urine, causing the inability to pass urine.  Went to Emergency Room - diagnosed with UTI.  Two days later, called ER to check on culture - no bacteria.  They wanted me back in to redo the work up.  After a CT scan, they told me I had a simple cyst (4.8 cm) on left kidney, and what was either a complex cyst or highly suspicious for RCC mass on the right kidney (5.2 cm) and a mass on the right adrenal gland (1.3 cm).  Wanted to admit me to hospital for CT scan with contrast, nuclear bone test, etc, etc.  I wanted to slow down because I know from previous history my adrenal mass is benign and both kidneys have had cysts since at least 2003.  They had me very  scared, plus the fact that 8 nurses had already come in to try to find a vein and couldn't.

So, I see the Urologist on Tuesday.  

My question to any of you who care to ponder a guess - if they remove the right kidney, will they need to remove the cyst from the left kidney given its size?  

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

Bella,

Assuming the mass on your right Kidney is RCC the concern is the "simple cyst" on your left kidney which is 4.8 cm. That is a large simple cyst. There are options for removing such a cyst such as freezing and zapping (RFA). Each option has to take in consideration the RCC in the other kidney. Although neither diagnosis is life threatning the two together is what make it difficult. Seek out if you can a second opinion of a specialist as high up the food chain as possable such as at a top hospital or University.  As far as for an answer to your specific question that is for a surgeon  and is above my pay grade.

 

 

Icemantoo

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

Depending on where the mass is located on your right kidney, even if it's RCC they may be able to remove it with a partial nephrectomy so you don't lose the whole kidney. ITA with Icemantoo; get the best possible specialist.

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Thank you for the response.  I am a bit worried with involvement on both kidneys.  I am sure they will want to address the simple cyst given its size, however, just anxious as to how this is all going to play out.  I had ovarian cancer in 2003 and radical hysterectomy so really worried that I am now facing yet another cancer.

We will wait to see what the Urologist has to say.  

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Reiterate was iceman and APNy said.  My first local urologist indicated I would need a radical nephrectomy.  I went into NYC and found a doctor at Sloan Kettering who did a partial and preserved 95% of my affected kidney.  It was an uphill battle with my insurance company to get approved, but I fought and they paid.  Most health insurance plans will pay for a second opinion.  I found my doctor by reading the American Urological Association guidelines on renal masses :  https://www.auanet.org/education/guidelines/renal-mass.cfm

Best of luck to you.  This board is an outstanding resource and source of comfort. 

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I am glad to have found this chat board.  This is something that is difficult to go through and family/friends who are well meaning tend to go with, "it is all going to be fine, just wait and see."  It is nice to read the stories of those who have gone through this and to bond with those still going through it.  

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

Bella's Mom  ((( HUGS )))

Know that we understand and appreciate all you are concerned about! Remember we'll walk this journey along side you if you want us to! Okay hon?

Yes, well meaning folks think that by offering you such positive thoughts it will comfort you. I do believe that you get a surgeon has experienced such a dilemma and can offer you the best treatment for you.

So, let us know how you are doing and how you are feeling.

I do feel for you..

Another hug,

Jan

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Thank you for caring.  The hardest part right now is not knowing exactly what I am dealing with.  Hubby is so worried he has already gone to his HR department to ask about taking Family Leave to be with me every step of the way.  Hoping we will have a better understanding of everything going on after I see the Urologist today.  I am remembering all I went through 11 years ago with ovarian cancer and don't feel like I have that kind of fight in me these days - we will have to wait and see.

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

I'm so sorry you might be facing another fight but it's wonderful that your husband will be there for you every step of the way if that's the case. Wishing you the very best possible news.

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

The urologist said that my mass is "most likely" RCC since he has not seen many masses that have calcification that are benign.  Either way, he said it needs to be removed.  He believes a laparatomy removing the mass and partial nephrectomy is appropriate.  While he has ordered a CT Scan with contrast, he said he would be comfortable in removing this based on the current CT (meaning he doesn't believe there is mets any where).  He said the 4.8 simple cyst is not an issue and will not need to be removed.  He said my overall prognosis is very good.

Fingers crossed for a positive result on the CT with contrast.  Thank you for being here with me - you all already mean a lot to me during this process.  So nice to be able to converse with those who are dealing with the same issues.

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

Bella,

 

You should do fine with the laproscopic partial of the 5.4cm mass. Been there , done that except in my day they were not doing partials.

I am a little cofused about the lack of concern regarding the 4.8 simple cyst. Originally you identified it as 4.8 cm. Later you identified it as 4.8. Could it be 4.8 mm which would explain your doctor"s lack of concern?

 

4.8 mm is less than half the size of a cm. Harmless cysts one or two cm or under are common and usually nothing to worry about.

 

 

Icemantoo

 

 

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Icemantoo - It is 4.8 cm.  He showed me and my husband the CT scan and it is a large size.  I asked him if it was going to be an issue and he said no - I have to hope that his 29 years of experience aided this decision.  At this time, it is not causing any issues for me (e.g. pain, etc).  He is referring me to another Urologist who will do the laparoscopic partial nephrectomy as he said he does not have the experience to do a lap partial nephrectomy, so, I will get a chance for a 2nd opinion on that.

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

Again, this is kinda good news, right? I too wondered about the cyst. My urologist/surgeon showed me the difference in the margins and brightness of a cyst vs a tumor which is not as bright with irregular margins, at least in my case.

Glad you are having a partial robatic laproscopic surgery. Much easier to recover.  I have had 2 lap abdominal surgeries and I hardly had any pain, used ice on incisions as narcotics didn't agree with me. So I wish you an easier recovery than what you went through with ovarian cancer.

Keep us informed and tell that hubby of yours, I love his commitment and care for you!!

Take it a day at a time please. Come here with any questions.

Gentle hugs, Jan

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Thank you, Jan.  My hubby is definitely a keeper - he has been through so much with me and always there to support me.

Wish me luck today - I have a CT scan with contrast.  Praying they do not have an issue finding the vein for the IV as that, for me, is the most stressful part of these procedures.  Hoping they do not find something that will change the game plan on my surgery and prognosis.  Frown

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

CT with contrast results are back.  It appears that the RCC has been verified - it is a vascular mass well enhanced under contrast with numerous calcifications.  It is partially in the kidney but does not infiltrate beyond the perinephric fat.  There are blood clots in the collecting units of the kidney, however, he believes those will resolve.  No evidence of metastatic cancer.  Prognosis is good - the margins are sharply defined.  I am now waiting on the referral to San Francisco CPMC for the laparoscopic docs.  They will be taking the small mass off of my adrenal gland as well.

Thank you everyone for taking this journey with me.  It means so much to be able to post and get feedback from all of you.

Srashedb
Posts: 482
Joined: Dec 2013

What types of tests did they use to determine no mets? My husband had several tests done to make sure there were no other mets (2 on spine) before any surgery was done.

You are being referred to a very good cancer facility.

Don't mean to scare you.

Sarah

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

They did CT with contrast and a nuclear bone scan, Sarah.  

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I went to see the surgeon in San Francisco on Monday and came away very disappointed.

 

Background - My Santa Rosa Urologist showed me and my husband my CT scan.  We could see the kidney, where the tumor was sitting and its shape.  Along with the confirmation of 2 radiologists, we could see the tumor is spherical in shape and sits towards the top of the right kidney, abutting the liver.

I went to the office of the surgeon in San Francisco which, can I just say, looked like a cattle call for men with prostate issues.  There were about 10 men sitting in the waiting room which was so small, every time the door opened, someone got a back full of door knob.  The office staff was very rude - handed you a cup and told you to go down the public hall and pee in it, then carry it back through said hall and into the waiting room to deliver it to them.  Not a good first impression.

Surgeon comes in, talks a bit and then takes the CT scan disk I have brought and goes to look at it.  Comes back in and proceeds to draw a diagram of my tumor - he says it is elongated from the mid-kidney to the top of the kidney and deeply embedded in the kidney.  Bottom line, he doesn't think he can save the kidney - will have to be a full nephrectomy.  Wait, what???  This is in direct conflict with my Urologist (29 years experience) and 2 radiologists.  AND, he wants to do the nephrectomy in an AMBULATORY facility which he just happens to be a partial owner of.  So, you want to take my whole kidney AND send me home the same day?

My husband and I literally ran out the door while telling him absolutely not.  What is wrong with this picture???  I am now awaiting a referral for a 3rd opinion.  Ugh.  Thanks for listening/reading.

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

Bella,

Unfortunately for you the vast majority of Urological patients are men. They could have all been lined up for vascetomies.

My guess is that your Urologist with 29 years experience is not a Urological or Kidney Cancer surgeon as the Urologists trained in those surgeries are usually much younger.

Sometimes some of the best surgeons have a less than desired bedside manner. That being said I do not think that this type of surgery is suitable for an Ambulatry Surgical center as a stay for at least 2 nights without complications is usually necessary.

 

Let us know how the 3rd opinion goes. It may be that a partial is not in the cards.

 

Icemantoo

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

My Urologist is a surgeon.  He has referred me out based on his belief that this can be a laparoscopic partial nephrectomy which he told me he does not have the skill to do.  He can, however, do it laparoscopic if it is a full nephrectomy.  So, if the 3rd opinion is that it must be a full nephrectomy, then my current Urologist will do the surgery.

Will let you know after the appt.  Fingers crossed!!

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

Bella,

When I had my surgery 12 years ago they were not doing partials. My surgeon was fresh out of his internship in Laproscopic surgery. He is now Chief of Uro;ogy at the hospital I had my surgery at. The only question back then was whether they might have to make a game time decision to go from Laproscopic to open (which they did not)>

Actually my surgery was so long ago that DiVinci himself did the surgery.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Sorry you are having a rough time with doctors.  I know it is a bit further, but I suggest you see if you can get in to Stanford.  Dr B. Chung is awesome.  You will be treated with kindness and respect.  And a top notch Kidney Cancer surgeon.  He will most likley want all new scans, a CT and an MRI.  They have the latest equipment and it can make a big difference. 

Good Luck

Ron - My $0.02 worth

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I actually used to work at Stanford and their facilities are top notch.  Unfortunately, I have an HMO for insurance and they limit me to Sutter Health facilities and doctors. 

Srashedb
Posts: 482
Joined: Dec 2013

speaking not as the patient but as the spouse, my husband's tumor was 10 cm upper pole of the kidney and the surgeon and oncologist work together. The practice is genounitary so there are prostate patients there and both doctors do both.

before the surger, we were told that it would be done laproscopically but that it might need to be open if facts warranted.

it is only when the surgery is done that the procedure used can be known and as has been said, surgeons are not known for their bedside manner.

i know that you are frightened and would prefer a partial but what if there is some overlap with the liver? Don't you want all of it out? Partials, as many here can tell you, are not necessarily a walk in the park.

i think my point is get as many opinions as you need but let the experts do their work. As an aside, 22 years ago, I was dx with breast cancer and initially wanted a lumpectomy but as things went, I ended up with a double mastectomy and have never looked back. My husband called it a "sacrifice to the gods". I was in my 30's. 22 years have allowed me to see my sons grow up, get married and have my grandchildren.?

hope this helps you and by the way, my husband did have laproscopic and his recovery was fairly uneventfu. It has been 13 months and so far, he's doing well with no further progression.

Sarah

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

If they can’t do a partial laproscopically, why not consider an open one? My partial was open. I have a single four inch incisision (smaller than some lap ones) and recovered quickly. I was up and walking the same day of the surgery and out of the hospital in two days. So if there’s no one who wants to attempt it laproscopically but an open version is possible, I would go with the open partial rather than a full lap. It all depends on the tumor location and its involvement with other areas. And yes, I did sign a consent form that the partial may have to convert to a full during surgery. That's always a possiblity.

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I appreciate your post.  

I have a Urologist who is wonderful, is a surgeon, and can do a full nephrectomy laproscopically.  I am seeking other opinions ONLY because it is his belief that a partial can be done and he freely admits that his laproscopic skills are limited in that regard.  If the next opinion is that it cannot be a partial, then my current Urologist will do the full nephrectomy. 

 

While I am happy to "let the experts do their work", I am also of the mind set that I have to do what is right and comfortable for me.  When I hear someone telling me something that I know is either not quite true or may be an exaggeration of the situation, I am not likely to feel comfortable allowing them to handle my medical care.  Some doctors tend to recommend what they do best, even if there is an alternative.

 

In 2003 I went in for an exploratory surgery and came out with a radical hysterectomy and ovarian cancer so I am aware the game can change once they get a look inside.

Srashedb
Posts: 482
Joined: Dec 2013

since you used quotation marks, you were responding to me. I am sorry that you are going through this and wish you the best.

that being said, my comm were made to help you and if they didn't, then so be it. But, please, don't take your anger out on me.

Sarah

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

Nobody meant to offend.

 

Icemantoo

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Sarah - Everyone's post/opinion is subjective.  My response is not one of anger and if it appears that way, it is simply my writing style.  I don't want you to think I am ungrateful for help here, or that I am discounting the expert opinions I have received.  I have been through this before and back then, I simply took all expert opinions as truth when the reality is that a doctor will recommend treatment based on what he specializes in.  I thank God I found my current Urologist because that is not his style - he could have told me I needed a full nephrectomy and we would have gone with it.  Instead, he admitted his shortcoming and recommended I seek out someone who could do a partial.  In the grand scheme of things here, I will do what I have to do to make sure I am cancer free because, yes, I want to take every opportunity to make sure this surgery removes all of the tumor.  

 

Srashedb
Posts: 482
Joined: Dec 2013

it's all good; confidence in your doctor is important and I wish you the best of luck. Please keep posting 

Sarah

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Hello everyone.  Well, I had my 3rd opinion last week and it appears they will have to do a full nephrectomy.  Urologist/Oncologist in Sacramento said the tumor is too close to the renal artery to get good margins on a partial.  So, I am waiting on a surgery date with my Urologist. 

 

Of interest, when I had ovarian cancer in 2003/2004, the CT scans of my abdominal area showed something on both kidneys which, back then, they said were simple cysts.  The left continues to be a simple cyst, however, the Urologist/Oncologist in Sacramento said it is quite possible that what they were seeing on my right kidney back then was the start of the tumor.  He said it is very rare for them to run across someone with a 5 cm or larger tumor who may have a CT scan of the tumor before it was actually a "tumor".  We are working on getting my old scans for him as he wants to do a study on it as he believes it may have some educational value. 

Hoping we can get surgery scheduled soon.

Subscribe to Comments for "Recent CT scan shows 5.2 cm mass on right kidney"