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What do I expect?

BamaGirl74's picture
BamaGirl74
Posts: 4
Joined: Mar 2018

I am new to the group. Just joined today.

I received a dx of a 1.4 cm hereogeneous enhancing mass off the upper pole of the left kidney, suspicious for small enhancing neoplasm on 3/21/18. 

I am lucky to have gotten an appointment for tomorrow and I'm really looking for advice.

What am I to expect at my first appointment? With this dx, what tests have they run? Mainly I just want to know what to expect. I'm nervous but have a GREAT support system so I'll be ok. I'm hoping that this will help me feel less anxious about tomorrow. 

 

Thanks y'all!!

icemantoo's picture
icemantoo
Posts: 3181
Joined: Jan 2010

BamaGirl,

I assume your first appointment is with a Urologist.  . Your suspected mass is very, very small. The  doctor after reviewing your CT and the location and appearance of the mass will discus options with you one of which may include watch and wait because it is so small. Whatever the case with a mass  so small you are scheduled for an excellent prognosis. If the Dr. is not a Urologist who also specifically deals with Kidney Cancer as well you will probablem get another referral higher up the totem pole.

 

 

icemantoo

BamaGirl74's picture
BamaGirl74
Posts: 4
Joined: Mar 2018

icemantoo,

 

Oops! I left out a few details. The diagnosis was from a CT scan I had done after having lower right quadrant pain for over a week. They found this at that time and yes, my appt tomorrow is with a Urologist.

 

Thank you so much for your quick reply. I honestly had no idea what to expect. No one prepped me for anything just here, take this disc and repoort to your appt which is on _____... 

Given my diagnosis does it sound like it's malignant? I was really hoping it was benign but, everything I have read shows malignant. I do know that it's small and they caught it early which is a HUGE relief!!

Brock1969
Posts: 80
Joined: Jan 2018

In terms of size. As Icemantoo indicated to me, and to you, your options probably will be to just observe it (I think that is to give piece of mind that it isn't some fast moving, sinister monster), freeze it out (usually for older patients) and to get a parial neph...cut out the sucker and move on (which was option I took). I was also hoping for benign, but alas it wasn't. Doctor told me that recurrence based on the size and where it was on the kidney (in a great spot and it hadn't really "moved in") was extremely small....believe it or not similar to % of someone getting it who had never had it before. This is all good news. If you are young, I would say go for the robot surgery. They take it out and can tell you exactly what you were dealing with. The recovery is fairly quick (though today I am one month out and feeling a little pain because I overdid work on the elliptical....I need to stay away and just choose walking for now...and no shoveling as Iceman says :). 

Good luck. I am sure both neuroligist and the next stages of doctors who may eventually be in your care will have all positive and reassuring things to say. Because you caught it so early (a rarity because kidney cancer is asymptomatic), they will say you are blessed. It was hard for me to comprehend labeling it as that when told I had something on my kidney, but I hjave gained much perspective from the people on this forum and am truly starting to think that a guardian angel was looking out for me to find it early. You cannot predict life nor control it....you just have to be strong in your fight. 

BamaGirl74's picture
BamaGirl74
Posts: 4
Joined: Mar 2018

I am hoping that they give me the option to just take the sucker out! I am 43 and in great health, it was just odd that they found it on a CT that had nothing to do with my kidneys. My mother in law passed away in Sept of 2016 from bladder cancer and I fully believe she was watching out for me. By the time they found hers it was already stage 3 and it spread pretty rapidly from there. With this fresh in my mind, it has scared me a little but not so much that I am incapacitated. Much like everyone else, if you get the news that you have this, it is scary. 

I happened upon this site and am very greatful that I did. 

Brock1969, stay off of the eliptical!!!

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

Hi, it is called a serendipitous finding, or incidental finding.   Means the tumour was found looking for something else, and since kidney tumours are often non symptomatic until they are quite advanced this is a very good way to find them. Congrats.   Yours is small.  It may be decided to wait and watch, though if it is growing and if it is enhancing such that it doesn't look like a cyst (essentially the density of the interior on CT scan with contrast is what the pathologist use to exclude a cyst)  then I would be inclined to get the tumour removed.  I am 50, had a similar diagnosis and had a 2.2cm tumour removed in end of last year.  3 months post op I have to remind myself it happened.   My tumour was benign, as 10 to 20% can be.  Not a Renal Cell Carcinoma (RCC).   It still could have grown significantly and destroyed the kidney and I didn't fancy waiting and watching. You also cannot tell until the tumour is removed and pathology is done.  Hence the need to remove it surgically and not burn it off.  Good clear margins and specific pathology from a great pathologist is important.  Really important.   Tumours can do weird things and even small ones sometimes metastisise. Rare but possible. There are also some really rare tumours on he kidney that are not RCC and I would definately want to know if I had one of those as they follow up scans and treatment can be different.  It can't metatstise  if it has been surgically removed.  Most often the surgery is considered curative and you might ony need periodic scans.  I don't as it was benign.

 

I was also keen to have it done on my terms - when I was in otherwise good health, had time (was between exams and Christmas - superficial I know, but I am a Mum with kids who are all at the going to uni stage and I wanted to be able to support them).   When I could ask my own Mum to come and look after me - she was available. 

My upside is that I have removed the tumour and having had the pathology my mind is completely free to not worry.   You will see that stress and worry about ongoing scans is a real thing that impacts quality of life.   I would not be living stress free if I knew that every 6 months I was checking on tumour growth and then deciding if it was needing a significant operation.  It is a significant operation - needs a good 3 weeks recovery and then a month or two of taking it easier than normal.  You do have to take time out from normal life, so planning when to have an operation and where and by whom is a good thing.   You want a surgeon that does lots of nephrectomies and good pathology reports.  In some parts of the world a general surgeon might do it, in others a specialist surgical urologist - you want the latter. 

Good luck.  It doesn't seem like you need to be in a roaring hurry.   So hopefully you will have some time to choose a path that is suitable to you, with a surgeon and hospital you are pleased with the recommendations. 

Ree_Maryland's picture
Ree_Maryland
Posts: 157
Joined: May 2014

 

Tomorrow is my 4th yearly mri and chest xray, hate the mri thing but other than that I will be glad to get it over with. 

Wehavenotimeatall
Posts: 472
Joined: Aug 2017

 Hope you got good news ree

Annie

Bay Area Guy's picture
Bay Area Guy
Posts: 376
Joined: Jun 2016

Mine (1.5 cm) was initially found by a CT scan looking for kidney stones in response to a routine physical that found microscopic traces of blood in my urine.  I was referred to a urologic oncologist at Stanford.  He told me the standard of care for lesions our size is to monitor.  He also told me that if I was not psychologically able to handle having it inside me, he could arrange for it to be removed.  I asked the risk of growth and spread and he said these grow very slowly and rarely spread, so I decided to take his advice to monitor.  I alternated between ultrasound and CT scans every six onths.  About 2-1/2 years after initial diagnosis, an Ultrasound determined it had grown to 1.8 cm.  So, we opted to take it out.

The options presented were robotic surgery to remove just that part of the kidney with the lesion or ablation (cooking - radio frequency ablation or freezing - cryoablation) that is done by inserting needles under a local during an outpatient procedure.  Surgery has a 95% - 99% success rate while ablation is in the 90% - 95% range.  I chose surgery for the higher success rate and because the little bugger would be OUT.

BamaGirl74's picture
BamaGirl74
Posts: 4
Joined: Mar 2018

Bay Area Guy,

That's what I am hoping for, that they give me the option to have it removed because I don't think that it will do anything but get larger over time. That's been the case with the research I've done anyway. I'm healthy now so, might as well go ahead while I can recover well. I can't predict the future and know that I will be healthy for surgery in a couple of years, I certainly didn't expect this so, I can't say that something else won't pop up. If given the choice, I will opt for surgery too, that way I KNOW that they have gone in there, looked around and all is well once it's out and that there is nothing else hiding. I think of all kinds of crazy things and have since I had the CT done. 

 

I am so happy that everyone is doing well! Cancer sucks and it's scary. I'm glad there is a place like this to go to. 

Bay Area Guy's picture
Bay Area Guy
Posts: 376
Joined: Jun 2016

I certainly respect that point of view.  The only reason I opted to wait is because the urologic oncologist said lesions this size are often not malignant and he didn’t want to r3duce my kidney function by surgery if he didn’t have to.  ironically, I just had my annual physical and my kidney function, at least as measured by my creatinine level, improved from just before the surgery.  The measurement dropped from 1.0 to 0.9 (lower is better for this measurement).

I’m guessing that if it is reasonably accessible, they’ll take yours out through minimally invasive robotic surgery.  Mine took about three hours, and I was out the next day with pretty minimal discomfort, but I may be an exception because I have a very high pain threshold.  No surgery is pleas@nt, but as long as you don’t overdo things on the recovery, it’s pretty smooth after the first couple of days.  And at Least one person on this board will likely have had just about every experience you will likely encounter during your recovery.

Yes, hearing the words “You have kidney c@ncer” are terrifying, but advancements in early diagnosis @nd treatment have turned it into a very, VERY survivable condition.

stub1969's picture
stub1969
Posts: 768
Joined: Jul 2016

First of all, welcome!  Although I understand your initial reaction of "getting it out", the approach Bay Area Guy took when his lesion was found is worth considering; especially considering the size of your lesion.  I'd encourage you to visit with your doctor about the possibility of aggressive observation.  Since RCC grows at a relatively slow rate (some figures are about .5 cm per year) you could rescan in 3 to 6 months just to monitor if there is growth.  A lot of decisions for you in the coming days and weeks--Good luck!

Stub

 

Bay Area Guy's picture
Bay Area Guy
Posts: 376
Joined: Jun 2016

In the 2+ years I knew about my little friend, the max change in estimated size was from 1.5 cm to 1.8 cm.  At removal, it turned out the actual measurement was 1.7 cm.

Oneshot's picture
Oneshot
Posts: 149
Joined: Jul 2009

Hello folks,
I'm  posting on here 1'st before I try to find more info in the post(s) in the kidney cancer threads.
I have been a member of the pancreatic cancer threads for sometime, but due to a MRI my wife's pain management dr. requested  two weeks ago due to pains in her leg. The results she got. Have me posting here.
   Today on her way to work.  She stopped by to get the results . She was told she has a large mass on or between her kidneys, with lymph nodes involved.  This was all I could get from a phone call from her before she went to work.  Am sorry it's so vague. 
 Due to what I went through and knowing this is a dr. that specializes in pain managment only. ( I'm still wondering why no phone call or notification of the mass was not mentioned sooner when found on the scan! )   Sorry I had to vent a little .  So, I'm reaching out .
At this point she is fixing to have a CT scan done on both the chest and abdominal  areas. Just scheduled today ,for friday.  We don't know much more at this time.
I am like anyone else and at this point ,  I am praying it isn't cancer.
She had a lot of stress at work over the past 5 months along with this leg pain. She wasn't eating very well during this time and she occasionally would get sick and throw up.  Not to mention sleep alot .  We both figured it was from the stress at work. She changed departments and actually started eating again. Not to mention she looked happy for the first time in months after coming home from work!
But, then this news.  I don't want to jump to conclusions yet . But I'd like to get some insight on what is to come possibly.  Such as sequence of events and what to expect.  As those who post on this site know,  all to well. No matter how positive a person may be. When that "C" word comes up. It tends to take the wind out of your sails for a bit.     Each cancer is different . So, I figured I'd come to the folks who have first hand experience with kidney cancer. To ask questions and get  some insight.   Just in case!   My experience when I had pancreatic cancer can get me so far but ,it wasn't kidney cancer.
I appologize for my long winded and scattered ramblings.  I just want to be ahead of the curve. If need be.
I will give update on her results when received.
Oneshot

icemantoo's picture
icemantoo
Posts: 3181
Joined: Jan 2010

Sorry about your visit here. As soon as you post your results we will try and give you an educated guess as to what is ahead.

 

icemantoo

Oneshot's picture
Oneshot
Posts: 149
Joined: Jul 2009

Icemantoo, 

Thanks for the reply.  I guess I just had to get it off my chest a bit. I'm on the other side of the coin this time, so to speak. 

Will update A.S.A.P.

wifeandmomof3
Posts: 5
Joined: Sep 2017

Bama Girl - my husband is in a similar situation.  Dr's found the spot on his kidney during a CT scan.   Couldnt' find it on an ultrasound.  Did a follow up ultraound 4 months later and it has grown, but still under 2 cm.   He has a consult and a ultrasound to map out the procedure later this week to do cryoablation on it.  Dr told us that in the case of his tumor, about 75% are malignant, but it is small and early and using this technique should get rid of it.   Granted we still ahve to have the consult.  Everything so far indicates no giant rush though compared to previous experiences so that is good.  It is all a hurry up and wait though.  He'd like to just move on :) 

 

BoondockSaint's picture
BoondockSaint
Posts: 238
Joined: Mar 2017

Bama......you sound similar to my wife. Good health, young, etc. hers was caught in an incidental finding looking for a kidney stone that was giving her flank pain. Although hers was larger at approx 3.5 cm we got the little Demon cut out and sent back to Hell where it belongs.

That was a little over a year ago and she’s had 2 follow up scans since with good results. I’d see what the Dr. Has to recommend and go from there. You can always get a second opinion too. Either way trust that you’re in good hands both with your medical team and here.

Best wishes.

msjax
Posts: 20
Joined: Dec 2017

Bamagirl ~ I too had a "small mass" 1.7 cm discovered in October 2017 and was told not to worry~I had time.  I waited four months until my work schedule cleared to have a partial nephrectomy--the surgery was very uneventful.  At the follow-up appointment I learned my staging went from T1 to T3a because the tumor extended into the perirenal fat--which increased the size of my tumor to 2.3 cm on the pathology report.  I am writing this not to scare you but as a cautionary tale that everyone's experience or situation is different and that a "small mass" can spread.  My advice--don't wait--have it removed by a onco/urology surgeon with plenty of experience.

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