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Newbie with a few questions

Trisa1795
Posts: 9
Joined: Aug 2018

Hi everyone!  First, I want to say, "thank you" for this discussion board.  I have been spending the last few weeks reading and learning alot.  

In June, I had lumbar spinal surgery.  After the surgery I was in more pain than before surgery.  After 10 days, my surgeon ordered a new MRI where the radiologist "found" my renal mass.  It is now the end of August and I have had an ultrasound and CT Scan.  My nephrologist who I see yearly for continual kidney stones, has made an appointment with a urologist. It is not until September 27th and I am so anxious.   I was hoping you could answer a few questions.

1.  What are your thoughts on my CT Scan report?  What should I expect?  From what I have been reading, I am expecting him to say that I will need a partial nephrectomy.   (See below for the report)

2.  Is waiting until September 27th too long?  

3.  Anyone from Pittsburgh, Pennsylvania area on this board?  If so, who did you see?

4.  I know I read a really good post with a list of questions to ask the doctor but I can't find it.  Would someone be able to post the link or compose a list for me?  

 

I appreciate all your time.

~Trisa

 

Report:  FINDINGS:

There is a complex, mixed attenuating space-occupying lesion along 
the medial aspect of the upper pole of the right kidney, 
corresponding to the multiseptated complex lesion identified on the 
ultrasound of the retroperitoneum done on 08/13/2018.
This space-occupying lesion measures approximately 2.4 cm in 
superoinferior dimension and approximately 3.1 x 2.3 cm in transverse 
dimensions.
On the noncontrast study on the coronal images, this space-occupying 
lesion has a mean CT number of approximately 21 units
Following contrast administration, on the delayed phase, this 
space-occupying lesion has a mean CT number of approximately 48 units.
On the axial images this space-occupying lesion has different CT 
numbers depending on the area that has been measured.
There is a fairly thick incomplete septation seen, which has a mean 
CT number of approximately 82 units. This area measures approximately 
20 units on the noncontrast study.
This is concerning for a mural nodule.
The rest of the kidneys show normal parenchymal enhancement.
There is no abdominal or pelvic lymphadenopathy.
The liver and spleen show smooth contours
No focal lesion or abnormal enhancement is seen in these organs.
There is no filling defect seen within the renal veins.
The gallbladder, pancreas and adrenals are normal.
The abdominal aorta is of normal caliber and shows a normal 
bifurcation.
There is no free fluid in the abdomen or the pelvis.

Impression:
Impression

* 2.4 x 3.1 x 2.3 cm space-occupying lesion in the upper pole of the right kidney, corresponding to the lesion in concern identified on the recent ultrasound of the retroperitoneum. * The CT findings are concerning for a cystic renal neoplasm such as a primary malignant renal neoplasm. 

icemantoo's picture
icemantoo
Posts: 3217
Joined: Jan 2010

Trisa,

 

 

Your potential tumor is small so a month wait to get it taken out is normal. However a month just to see the Urologist sounds too long. See if you can be seen earlier. Assuming it is malignant (from the reort) a full and complete recovery is to be expected. Whether it is a partial or full or laproscopic or open will depend on a lot of factors your Urological Surgeon will discuss with you.. Make sure you are seeing a Urologist who does Kidney Cancer surgery regularly. Not fun after having surgery  that you may have Cancer and they want to do surgery again. We all went thru this. The good thing is that at 3.2 cm your prognosis should be excellent.

 

 

icemantoo

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

The tumor is small and you are fortunate they have found it so early. I know all of the unanswered questions can be awful. Once you see the specialist they will explain the best surgery options to you. At least it is being taken care of and you will have answers soon!! I wish you all the best.

icemantoo's picture
icemantoo
Posts: 3217
Joined: Jan 2010

give medical advise, but give you support and try and steer you in the right direction. Different experienced surgeons sometimes come up with different surgical proposals. Ask what he/she thinks is the best for you. Sometimes they will give you the pros and cons of different approaches and let you meke the decision.. It is small so if you are uncomfortable with a surgeon or his approach you have time for a second opinion. In my day 16 years ago they just started doing laproscopic and there were no partials so they just yanked the whole thing out. This will soon be over, you will have an excellent prognosis and you will get on with the rest of your life. We all were a littke scared in the begining.

 

 

icemantoo

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

As other have said, kidney tumours are generally slow growing so there is no urgency other than to get things moving in the right direction.  Urologists always seem to have incredibly long waiting times so four weeks is not unusual or even all that much of a problem.

I was three months between first diagnosis and the nephrectomy, and mine was 6 cm in diameter, a bit larger than yours.

I did however end up with metastasis. We dont know if that happened before the op (ie waited too long) or even before diagnosis (ie would not have made any difference) or during the op (which I think happens more often than generally acknowledged).  But that is another story.

You seem to be on the right path, and have every reason to remain positive and look forward to a good outcome from this journey.

Best wishes,

Fred

 

 

 

a_oaklee
Posts: 440
Joined: Nov 2013

I agree with others here that your tumor is small.  They dont know that it is cancer, but they think it is.  

One month is not a long wait for a relatively small tumor, but after that appt there will be more waiting for surgery.  If I were you, I would call the referral place and tell them you want to be seen sooner and will take any cancellation at the last minute.  

Now is the time to assert yourself re your own care.  

Even though your tumor is small, noone currently knows how aggressive it is until there is a repeat scan.

I assume the doc will talk about (1) watch and wait (2) or a partial nephrectomy.  I would pursue a robotic partial nephrectomy.  I would not let them biopsy it.  But that's my own personal opinion.

Your best place to be is with experienced doctors, surgeons.  We live in a small town with inexperienced people.  We travel to a major university medical center.  Its 2 to 3 hour commute.  But we have been happily making those commutes for 6 1/2 years worth of appointments.  

I admire your research and I think it's ok to wait for your late September appt.  Be careful what you read.  Take it step by step and try to take care of your general wellbeing.  Best wishes to you.

Trisa1795
Posts: 9
Joined: Aug 2018

Thanks everyone. I’m going to call tomorrow and ask them to put me on a cancellation list. That is a great idea. 

The original urologist, which is the head of the department, was requested by my nephrologist for me to see, however, he is leaving the state. So, I am scheduled to see someone else in the department.  I will be asking about the robotic surgery as I know the head doctor performed this, however I could not find anything on this new doctor.  

It is so nice to be a pArt of this group and have a support system Especially since I am not telling my family anything until after I see the surgeon.  (The only person who knows is my husband)

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