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Cybball
Posts: 111
Joined: Nov 2017

Well, just wanted to say hello and thanks.  Been watching the board for a while to gain info.  Beginning of Sept, I had a pain in my right side.  Went to my GP and they sent me for an ultrasound.  They saw something on my right kidney.  Doc called and said it was an AML.  Then said it wasn't super clear and to get a CT done.  Had that done about a month ago.  They said it was "worrysome" as a solid mass at 2cm.  Finally got to see an interventional radiologist yesterday.  They are going to do a biopsy to see what it is and then consult with a urologist to decide course of action.

Really never thought I would be here.  I'm sure none of you did either.  Kind of insane.  I'm 47.  Have 3 awesome kids and a lovely wife.  Going to stay positive, as they don't know what it is yet, but I have this feeling deep down that I know.  :)

 

Thanks for letting me in.  I'll have lots of general questions going forward.

Rob57's picture
Rob57
Posts: 25
Joined: Aug 2016

The good thing is that if it is kidney cancer that is has been detected early. If it is 2cm and there are no other areas affected then this is very treatable. Find out what it is as soon as you can, then consult with your doctors to make the best decision. I was diagnosed in 2012 and my tumor was 5.5cm x 7.1 cm which is just over the threshold for stage 2. My doctor did an ultrasound on a Thursday and found a mass in my left kidney. I had a CT scan the next day and my kidney was removed about 10 days later. That was about five and a half years ago and I am doing fine today. It is best to get the facts to try to understand exactly what you are dealing with. Then consult with your doctors to make the choice that is right for you. 

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

Cybball,

 

We were all scared in the beginning. At 2 cm. whatever it is your prognosis will be excellent.. You will be around for all the grandchildren.

 

 

Icemantoo

Cybball
Posts: 111
Joined: Nov 2017

Thanks to you both.  Really appreciate that.  Biopsy is set for 12/7.  He said if it is not cancer, they may do cryoabilation on it.  Said he will consult urology.

 

I have a question.  Who would do the neph procedure?  Urologist or nephrologist?  My mom knows of a really good kidney guy.  Wondering if I should have them consult him (if different from a urologist in this situation).

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Hope you are ok

Its a lot to take in at the beginning

but you sound like  you wont have many major issues

You need a Urologist. 

Unless USA is different Renal Consultants are not trained in surgery  so  maybe Able to advise but will be unable to treat you

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Ask all the questions you need to. None are silly or unimportant. This is your body and something unforeseen that has happened. I too was shocked. 38 yrs old when they found mine. Just lost my whole kidney on Nov.7th. A partial was planned, but tumor had grown and was deeper than the images had shown. People on here are great and will help in any way they can. Let's hope it is not cancer. Even if it is, you are lucky to have caught it so early!!!!

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

My partial neph was done by a urologic oncologist with a ton of experience in doing nephrectomies, especially partial ones. I would recommend you find one who is also one. Since yours is so small, unless it's in a difficult spot they should be able to spare most of your kidney. But partial nephs are more difficult and that is why you need someone with lots of experience in doing them. All the best to you and hopefully it is an AML.

Cybball
Posts: 111
Joined: Nov 2017

Thanks!   I didn’t see the scan, but the mass is on the outer bottom edge.   Looked by the drawing the physician assistant did for me it would be a good spot for removal.  i hope so anyway.  

Supersum's picture
Supersum
Posts: 103
Joined: Aug 2017

A 2cm mass is amongst the smallest you would find here and can be easily removed by a routine procedure so keep your spirits up and look after yourself, you can come through this stronger than when you went in.

You might be interested to know that an older person with a <2cm mass might have it managed initially through active surveillance rather than surgical intervention, but you are young so it should come out. 

rdoyd2
Posts: 80
Joined: Aug 2016

Worst case you have it removed and go on with life. 2cm is very treatable with excellant prognosis.

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

Caught very early, no matter what it is.  Be thankful your body was sending you signals and you listened to those signals.  Kind of like my story too.  And I was also thankful my doctor listened to me and sent me for testing. 

We're here for you and any questions you may have.

Donna~

 

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Hi, I am11 days post partial nephrectomy laproscopically, imaged mass at 2.2cm, awaiting pathology. 

Ask questions about your options for treatementn and have the Dr quickly go through the reasons why they are suggesting the treatment.

Ask questions about the individual you are being referred to, what is their experience and training at the procedure, how many do they do? I asked my urologist (who did another procedure on me for kidney stones) was he the best at a partial nephrectomy laprascopically - the answer was no - he is the best at other procedures. I went and saw the guy that trained the original urologist.  I come from a medical family - lots of doctors - it is a bit of a family joke about checking that someone has done 'one' before, so I always ask 'have you done more than two of these?' .       I saw stome stats a while ago about nephrectomy, for some small hospitals the surgeon might only do a few a year.   You would probably want someone to do it that does it every week, has access to an operating theatre with all the right equipment (for laproscopic or robot assisted that will not be every operating suite in every hospital).  

Good luck with your treatement, 2cm on the outside of kidney sounds very straightforward so I hope that it is. 

Cybball
Posts: 111
Joined: Nov 2017

Thanks everyone.  Appreciate the positive vibes.  I'm doing pretty well staying positive, as I do know I'm super lucky to have found this thing early.  Still scary to have it in there not knowing.  I'm actually just anxious to get the biopsy done to see what they find, then get it removed.  

 

Cybball
Posts: 111
Joined: Nov 2017

Did anyone have soreness in their flank before surgery?  My interventional radiologist said he didn't think my soreness would be due to my tumor.  Mine is roughly 2cm / lower pole right side.  My soreness is on that same side.  Maybe a 3 out of 10 in sore.  

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Yes!!! I def did for around 6 mths! Most days it felt like someone had punched me in the kidney. That has been gone since surgery. My surgeon did not think it had anything to do with the tumor either until I just told him again this past Tuesday. My tumor was in the lower pole too.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

i was having pain under rib cage and occasiona flank pain   Was a 3 to 4 only in the weeks before surgery

does it come and go

 

Doctors told me they didn’t think was related but after surgery all pain is gone

 

A few others on here with similiar sizes to you also reported flank pain

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Flank pain is what took my husband to the ER. He had it for some time but would come and go, then one day it got bad, like an 8 out 10 and he went to ER. This is how they found his mass, which was 6cm. Listen to your body.  Good luck to you!

KrisG's picture
KrisG
Posts: 8
Joined: Jul 2017

I had a 2.2cm renal mass found incidentally at the end of March this year. I had 2 CT Guided Needle Biopsies to find out what it was...they missed the mark on the first try...hense needing a 2nd one. Pathology deemed it a Renal Cell Carcinoma, class clear cell type, Fuhrman Grade 1...non-agressive.

I just underwent a Partial Nephrectromy on 11/20/17 and am so far, recovering nicely at home. I'm 62 with 3 adult children & 4 grandchildren. I was not satisfied with my Doctor's suggestion of either Cyroablation or Active Monitoring. I opted for surgical removal. Period. Get it out of me!

As most have said already...you're young, the mass is small in size & it was detected perhaps early. The odds are in your favor. A Urologist is who you need. Perhps even seek one out before you have that Biopsy...but totally your call. Ask questions, be the squeeky wheel. 

Cybball
Posts: 111
Joined: Nov 2017

Thanks all.  The pain mostly feels like rib pain (not deep inside), but other times it sort of is.  It somewhat comes and goes, but only really from about a 1 to a 3 or 4 out of 10.  As much as I see online about people having some pain at times, I was surprised he didn't think it was related.  My radiologist who is doing the biopsy next week said they would consult with a urologist after the results.  I'm checking on urologists now to see who is good at this kind of thing.  Not sure what the thing is yet, but want to be prepared.  If it is cancer, I'm electing for surgery.  If it's benign, I may go the freeze route.  Not sure yet.  Praying it's not cancer.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I too hope it is not cancer. Three doctors told me whether they think it is or isn't it is best to get it out. From what I hear, the freezing method is mostly reserved for those who are unable to handle surgery. Also, biopsies can give false negatives or be inconclusive. I had one urologist tell me she didn't think I had a tumor, but that my cyst bled in to itself. Sooooo glad I got a 2nd opinion as it def was cancer. I totally respect your opinion and choices as it is your health and life! You are the one going through this and it is tough. I was just trying to share my experience with you. Best of luck and all the best to you!!!

Cybball
Posts: 111
Joined: Nov 2017

Thanks Anissa.  Appreciate your perspective on this.  I'm new at all of this.  :)  I did however, get the name of two really good urologists from my mom (retired nurse).  They both do robotic nephs and are really good.  When I go for my biopsy next week, I'm going to let the IR that I want either of them involved.  His plan was to consult with a urologist anyway, so I will feel better hand picking on that knows what they are doing.  

Cancer or not, I really at this point just want them to remove it.  The healing process will kind of suck, but at least that damn thing will be out of me.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Once things are in place it is the hugest relief!!!!!!!! I hope you have the best team!

Cybball
Posts: 111
Joined: Nov 2017

Just got home from my biopsy.  That went well.  Should know by Tuesday as to what they find.  

Cybball
Posts: 111
Joined: Nov 2017

Biopsy results should be arriving today or tomorrow.  I"m really nervous.  It's like I know what they will say, so I guess I'm kind of prepared, but really hoping for good news.  I could use some.

stevez
Posts: 51
Joined: Dec 2017

I can fully understand your nerves; I know the feeling.  Sending you bunches of thoughts, good wishes and prayers!  Steve

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Hoping for a positive outcome for you today!!

Cybball
Posts: 111
Joined: Nov 2017

Well, [Content removed by CSN Support Team.]  Just read the report on my biopsy results.  RCC with Fuhrman grade 2.  Guessing I'll be getting a call soon to set up removal of this thing.  Scared beyond belief right now.  Really dreading telling people.  Really wanting to get it out of me and have this phase over with.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

So sorry to hear this Cybball. Mine was a grade 2 as well. The good thing is that it will be gone soon! I know the wait can be horrible and sorry you have to go through it. I hope they get you in soon!!!

love_of_my_life
Posts: 77
Joined: Jul 2012

You are catching this early which is a very good thing.  Prayers are with you.

Cybball
Posts: 111
Joined: Nov 2017

Thanks!!  Radiology office just called.  They are presenting my case to their weekly kidney board next Wed.  I asked why and she said so they could determine the course of treatment.  I had a lymph node show up with a minor comment on the original CT.  He told me at my visit that there was no spread and it was contained.  I'm curious about that node.  I'm guessing that will be a part of the discussion.  She just said after that meeting, they will call and let me know the best course of treatment and go from there.  She said the urology group that I'm telling them to consult will be there.  I'm really just leaning to the partial nephrectomy over Cryo so I have better odds.  Guessing that if that node has anything to do with this, they will skip the cryo.

Now a short wait.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Wow. Sounds like you have a good team! Glad you are leaning towards a partial. Best to get it all out!!! Good luck!!

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