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Scorpion_John
Posts: 8
Joined: Mar 2016

I had my right kidney removed one month ago. Open nephrectomy, clear cell, 4 cm., stage t1a, grade 2-3/4, unifocal, limited to the kidney. I realize how lucky i was that it was caught so early before it had a chance to spread..  i wish i had found this site sooner, there is lots of good information here.. I have a few questions maybe someone will know the answers to... With a grade of 2-3/4, whats an estimate on how long it took to get 4 cm.? What does unifocal mean on my pathology report? And lastly, blood tests are showing  an Egfr of 51. I haven't seen a nephrologist yet and am wondering if the Listnopril HZT is whats bringing the Egfr down? What are the better choices of blood pressure medicine for people with one kidney? I know that depends on the individual, just wondering, in general what are most people using

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

Most questions you need to ask a doctor. All I know is that stage 1 is excellent news (within the caveat of having cancer which is not good news). All you have to do is do what your doctors say and you'll be fine.

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

Well Welcome to our forum! I assume your name is John, right?

I cannot answer most of your questions, except to say ASK your surgeon/urologist.

Some of your questions need to be well understood and seems important to you so ask your MD.

Maybe others will make a stab but again, we're not the doctors.

You are lucky as i was. Had the same size tumor , yet had to have kidney removed.

Did you mean your surgery was a RADICAL nephrectomy?

Follow the protocol of being monitored, ask your doc those questions and like me be blessed they caught it so early.

Warmly, Jan

 

icemantoo's picture
icemantoo
Posts: 3284
Joined: Jan 2010

John,

 

 

One of the things you learn here is that our Kidney function numbers are lower than that of our 2 kidney brothers and sisters, That being said a GFR of 51 is probably lower than it should be. I say probably because some of us senior citizens have a lower GFR as a result of 1 kidney AND getting older. I would definately see a Nephrologist. Since seeing one for the last 5 years ny high blood pressure has been addressed by him rather than my GP.

 

 

Icemantoo

Scorpion_John
Posts: 8
Joined: Mar 2016

I want to thank everyone for their replies and welcoming me to the forum.. I realize we're not Dr.s, i was just hoping for peoples opinions or personal experience. 

Jan, yes my name is John, i guess i forgot to mention that, along with I'm 44 years old. It was a radical nephrectomy, but from what I've read online that includes the Adrenal gland and they didn't have to take mine as everything was well contained in the kidney.  By open i meant it was the full incision type surgery.

I have to give my Dr.s credit, especially my primary. As soon as it was found he ordered all the scans, x-rays, ultrasounds, and blood tests that would be needed, and it was removed less than 3 weeks later. 

I am very surprised how quickly i am healing, the first week was the worst... I plan on getting referred to a nephrologist as my urologist recommended thats who should handle the blood pressure and what meds i should take.. again, thanks for your replies, John

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

John, welcome to the club!  I joined when I was 47.  Like you, I did not find this forum until after the surgery.

As far as gfr, check out this link:

https://labtestsonline.org/understanding/analytes/gfr/tab/test/

Your numbers do dnot seem too far out of whack, but discuss with your urologist and/or nephrologist.  As far as best meds for blood pressure and one kidney, I think your nephrologist would best answer that. 

I believe unifocal means the tumor was contained to a single site.  That's good news. 

No idea on tumor growth rate.

Make sure you keep walking as part of your recovery.  I walked twicer per day and that really sped up my recovery.

Scorpion_John
Posts: 8
Joined: Mar 2016

Thanks for the link.. I can vouch for the walking, i spent 3 days in intensive care after my surgery, mostly cause they said they were waiting for a bed to open up... i figure it was more like keep the more expensive rooms (icu) full. But either way, as soon as my catheter came out, they had me up and walking. I really believe it helped alot with my recovery, the walking wasn't the bad part... getting up was..lol  But it wasn't bad, i wouldn't use the morphine cause it made me sick. So i got something else (don't remember the name) in my iv every 4hrs. We would wait till after a shot and take a walk 2 or 3 times a day... in all my experience was alot better than i had figured it would be. They took pretty good care of me...

As for the growth rate... i can't find much about it online and i guess it really doesn't matter. Important thing is it's gone now... my urologist guessed maybe a year or so... but said the nephrologist would have a better idea

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

I wish I would have known of this site long before I found it too.   I was 3+ years post-op.

Stage 1...... AWESOME!!  As far as how long it was there, how fast it grew, my doc couldn't give specifics other than they are typically slow growers, but ask yours anyway.  And regarding another question, unifocal generally means in one location.  But as others have said, you're better off directing your questions about the other specifics to your doctor. 

Sounds like you're recovering very well.  Laughing

Donna~

 

 

donna_lee's picture
donna_lee
Posts: 968
Joined: Feb 2009

and you will find most of the primary answers on sites that list "Staging Kidney Cancer", and Complete Blood Screen or Complete Metabolic Panel.

Stage I-Greaaaaat.  Under 7 cm and confined to one area.  Not metastasized.  eGFR is related to age and 1 or both kidneys.  For my age, if I had both kidneys a 60 would be excellent.  With 1 kidney, it runs between 37-43.  You will find that is correlated with creatinine (or protein) in the urine.  If one goes up/the other is down a hair; and vice-versa.  The dr's or onc. will watch it and see where you stabilize or what your range is for the 1st year or two.  Your new NORMAL.  Just make sure you have adequate hydration to keep the kidney flushed.  And if you are having fasting blood work, make sure you drink water when you get up-it does make a difference.

You know how turtles go...sometimes not at all, but every once in a while they take off.  That's cancer.

Welcome to becoming a cancer survivor, and just keep on getting your check ups.

donna_lee

donna_lee's picture
donna_lee
Posts: 968
Joined: Feb 2009

Your regular PC/internist should be managing those for you.  The one thing is that you will probably need something for BP to avoid further damage to the one kidney.  Ace inhibitors, Beta Blockers, and diuretics all do different things. I have been on Lisinopril and Metoprolol for years-well since Kidney cancer.  After a weight loss a couple of years ago my lisinopril was lowered from 10 to 5 and then to 2.5 mg. Metoprolol is cut in half so I take 12.5 mg.  Taken daily at night, when I does the most good.

donna_lee

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

Welcome, John! glad you found us, but sorry about the circumstances.

It sounds like you are in a good place with your diagnosis. Yes, drink plenty of water. Also, stay away from Advil. If need be, use tylenol. And follow up with your BP meds. My pressure dropped quite a bit after the nephrectomy. I still need the meds, though - just the dosage was cut in half. Now as far as the cancer's speed of growth....it is a guessing game really....I was a stage 3, and had a 13cm tumor and the doctor thought I had it around 8 or 9 years. My GFR is a bit low but the doctors assure me all is good. Who can argue with that??

Hugs

Jojo

 

Scorpion_John
Posts: 8
Joined: Mar 2016

Donna & Jojo

Thats interesting that your blood pressure dropped. I was on Listnopril HZT 20/25 and Prodardia XL 60mg. Since my surgery i have had to add a third Teromin 50 mg. But i am thinking mine may have increased due to less activity from the surgery. It was nice out today and i went for a 2 mile walk... and to my suprise both my numbers and even my pulse was lower...

As the growth rate, from what I've have read..  the higher the grade is more aggressive and faster growing. As i said, it doesn't really matter, important thing is it's out... i was just curious how long it was in there

jason.2835
Posts: 337
Joined: Nov 2014

John,

2 and 3/4?  Is the doctor a Harry Potter fan? (not sure how that joke will go over) Or does that mean Grade 2 with areas of Grades 3 and 4?  That may be something you need clarification on.  The staging of the tumor has a lot of weight over how the doctor goes forward with how you are watched.  For instance, my tumor was Grade 2 and I just get ultrasounds twice a year but with a more aggressive grading the doctor may want to do CT, for instance.  

HOWEVER, you will notice in most of the literature that, with regards to kidney cancer, size matters.  Below I'm posting a link to a "nomogram" from Fox Chase Cancer Center; basically you input your information and it gives you survival rates based on your situation.  You will notice that the biggest prognostic factor is often size of tumor and changing the grade doesn't really change the prognosis a whole lot.  It would just be nice to know.  I haven't heard of doctors grading tumors in fractions before... However that may be a new thing.

But you are correct in that we are very lucky and our outlook is great.  So take a breath and be thankful that it is OUTSIDE of your body.  Better out than in.

Here's that link:  

http://labs.fccc.edu/nomograms/main.php?nav=0&audience=2

- Jay

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

It might be a bit soon to decide on your blood pressure yet. As you said, you haven't been active and I truly believe your body is still adjusting to everything at this point. It was several months before I changed my blood pressure medication. Just keep that in mind...your doctor knows best, but sometimes they do forget where they are at in your care program...you need to be your own advocate!

:)
Jojo

Scorpion_John
Posts: 8
Joined: Mar 2016

Jojo, 

You are probably right about it being early and still adjusting. My dr. and both feel it will lower back down the more active i become. We plan on eventually taking me off the Listnopril when it comes down. He just added the extra one for now to keep it down. It wasn't terribly bad but when my bottom # gets in the 90's i start getting headaches. I have been on bp meds since my late 20's

Jason, 

I'll check out the link and ask the dr. to clarify the grade... this is the first time I've ever seen a pathology report, but that's what it says, Fuhrman nuclear grade 2 3/4. I'll ask about it

APny's picture
APny
Posts: 1988
Joined: Mar 2014

Certainly should clarify grading with your doc but I think what that means it's a grade 2-3 out of 4. Meaning it's mostly 2 but there might be a few cells that are grade 3. Mine was also classified as a 2 - 3 and that's how he explained it. They always have to include the high grade cells even if they're just a few in number.

Scorpion_John
Posts: 8
Joined: Mar 2016

Apny

Thank you for the explanation. That makes sense cause it was written 2-3/4. I will still have my Dr. explain it, but i bet that you are right.. 

APny's picture
APny
Posts: 1988
Joined: Mar 2014

Yes, let us know what he says.

donna_lee's picture
donna_lee
Posts: 968
Joined: Feb 2009

They count the number, shape and size of the cells in a given sample and rate them on a 1-2-3-4 scale, with 4 being the most mis-shapen/aggressive type, with more of them in the sample area.

And they do use a hyphenated range.  On initial path. mine was a 2/3.  On the final they determined it was 3/4.  Most of the information for stageing comes at the beginning- i.e. Clear Cell Renal Cell Carcinoma, T2, N1, M1 tells other physicians that I had Clear Cell (as opposed to other types), that the tumor was over 7cm and not over 13 cm at it's greatest point, that it had gone to one or more nodes, and had metastasized to another organ. The Fuhrman grade provides info on how deformed the cells are, but is only useful to a treating physician.  I have never seen it brought into chart notes by oncology or my internist-just in the path reports.

On paper, you can have the same type and staging numbers as the next person, but your body is individual in how it reacts to surgery, medicines prescribed for other reasons, and drugs given for treatment of cancer. 

Welcome to Disneyland; and if your are old enough to remember the E tickets, it's a wild ride that has just begun.

Luck of the Irish to ya'

donna_lee

 

 

Scorpion_John
Posts: 8
Joined: Mar 2016

The staging was t1a Nx Mx, and it was clear cell, as for the grade... 2-3/4 is how it's typed.. so what would you understand that to mean? 

donna_lee's picture
donna_lee
Posts: 968
Joined: Feb 2009

Most all of your answers are on the web-and here are some of places if you or others want to look or print out copies.  In your search engine, type in topics like "Kidney Cancer Staging", "Kidney Cancer Fuhrman Scale", "ACS Cancer Staging."  These will give you a great overview and are accurate.  Be wary of some sites as they are littered with pop-up ads for products, etc.

That said, there are 2 stages.

1. Clinical Stage, which is the initial diagnosing physician's best extimate of the disease based on physical exam, lab tests, and imaging tests.  I had a regular physical with my new Dr. and he ordered labs and a UA.  I mentioned some symptoms I was having more related to the gall bladder and he also ordered an Untrasound of the abdomen.  Didn't get the results until after the US was read, but the UA showed blood in the urine (not noticeable to me) and the US showed a large mass in the r. kidney and mass(s) in the liver.  Saw the oncologist next day, discussed options-was given 5-7 months to live if nothing was done.  He** No, I won't go!!!  Had a confirmatory CT of chest/abdomen/pelvis; and a bone scan that indicated it hadn't mets to bones.  Was sent to urologic and thoracic oncology/surgery specialists and set up for surgery.

and 2. Pathological Stage is clinical findings plus what is found during surgery and visual exam of removed tissue.  That's how they determined mine was Clear Cell RCC, T2N1M1.  The T2 would now be described as T2b because of the tumor size that was confined to the kidney (had not invaded vessels or gone through the fascia covering the kidney.)  The N1 was for finding it in 2 of the 11 nodes just behind the location of the kidney.  The M1 was for the one large mets in the left lobe of the liver.  And for good measure, they examined the bile duct and gall bladder and removed the gall bladder due to a congenital defect and an extra growth of tissue in the bile duct.

Then there is a description of Pathological Staging.

Yours, Clear Cell is the most common type. then T1a Nx Mx.

T is the size of main or primary tumor and whether it's grown into nearby areas.  Yours at T1a means it was 4 cm across or smaller. 

N is the extent of spread to nearby or regional lymph nodes.  Yours at Nx means it was not in local nodes. 

M is if it has metastasized to other organs.  Yours an Mx means the presence of distant mets cannot be determined. 

Kidney Cancer Fuhrman Scale (named after a Dr. who first used the microscopic exam and nuclear grading system of cancer cells in several kinds of cancer.)          -Looks at the size and shape of the nucleus as a whole.  -and the size of the nucleoli.  -and the chromatic lumping.

The I,II,III, or IV is to designate how closely the cancer cell's nucleus resembles a normal kidney cell nucleus.  In Grade I, the nucleus looks very much like a normal kidney cell nucleus; it is usually slow growing and are slow to spred to other parts of the body.  In Grade IV, it looks quite different from normal cells and has a worse prognosis.

Mine did "come back"- a recurrence-or had already mets to two other nodes in other parts of the body.  Each was found on follow up CT's as nodes that had enlarged and became evident on a subsequent CT.  Each was removed surgically, and nothing else has been found to be cancerous since 2008.

I'm not a Dr. and not in the mode to predict or guess at someone's prognosis.  You just look at the numbers and live on.  All I will say is that your Staging looks good-they caught early on-and I would love to have your numbers.

Good luck.

donna_lee

 

 

 

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