Recent CT scan shows 5.2 cm mass on right kidney

icemantoo said:

Get an expert opinion

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

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.

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 said:

Glad to have found this group

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.  

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 said:

Thank you Jan

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.

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 said:

Some decent news

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.

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 said:

No it is CM

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.

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 said:

Not impressed

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.

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 said:

Icemantoo

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!!

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.