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Waiting to find out, 4.9cm complex mass

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Hello,

I recently had an ultrasound due to some left back/flank pain, and the report stated that I have a "complex, hypoechoic mass in the upper pole of the left kidney, measuring 3.5 x 4.9 x 3.3 cm.  This has a lobulated contour and internal septations, it does appear to have a cystic component."  

I have seen a urology doctor who has ordered an MRI, he said he was "moderately concerned" about this lesion.  I had an MRI for something else in 2013 and it was noted at that time as a "2.7 x 2.0 cm low attenuating lesion. appearing isoechoic to the renal cortex, and may need to be characterized, if clinically indicated". 

I have other health issues, and also have two genetic mutations that pre-dispose me to cancer, so I'm pretty worried about this.  I know I won't have any answers until I have the MRI, but just wondering if anyone has any thoughts about the size and description of the mass/lesion/cyst on my kidney? 

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

Given the size and growth it will probably have to come out. At 4.9 cm it is still small enough that your prognosis will be good. Make sure the Urologist you are seeing is a Kidney Cancer specialist.

 

 

Icemantoo

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

I'm seeing Dr. Daniel Dalton at Northwestern in Chicago and he specializes in kidney cancer and robotic surgery.  I will probably seek another opinion, just for my own peace of mind, and I've been reading about cryo-ablation, so that's something I want to learn more about as well.  Thanks for the response. 

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

So sorry for this scare. We do understand how it feels when you hear it might be cancer.

I also had a MRI when I should've had a CT scan. Is your urologist also a surgeon trained in robatic/laproscopic surgeries for renal cancer?

Who ever becomes your surgeon, you may have a partial (part of kidney removed around the mass) rather than a radical or kidney removed. Again, you want someone trained in this kind of surgery.

And, my urologist (who also was my surgeon) showed me the difference between the cyst and the mass. The margins are different and the cyst is brighter on scan with smooth margins.

We'll be here for you through this time, if you'd like us to be.

Sending you calm, healing vibes.

Hugs, Jan

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Hi Jan,

No CT for me unless it's without contrast, I have a severe allergy to CT contrast.  My urologist is trained in robotic surgery, he is supposedly one of the best.    Also, I'm looking for recommendations for a second opinion, I'm in the suburbs of Chicago, but I will travel if necessary.  I had a cardiac ablation for SVT 11 years ago and made the trip to the Cleveland Clinic for that procedure, because the doctors in my area weren't doing (in my opinion) enough of them for me to be comfortable having it done closer to home.  Thank you for the kind words, they are really appreciated. :)

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

Suki,

 

Glad to see you are in the hands of a top notch doctor. By all means seek a second opinion so you are comfortable with your decision.

 

 

Icemantoo

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Hi again, I have rescheduled the scan for this Friday the 14th, and the anxiety is so bad!  I'm wondering if it's possible to have a complex cyst that is the size of mine and they don't do anything?  Does everything that's not a simple cyst that is slowly growing eventually need to be removed?  

medic1971's picture
medic1971
Posts: 199
Joined: Sep 2015

Hi suki1724 and sorry you are here, but I am glad you found us. 

At 4.9cm I am almost certain that this will need to come out, but you have time to get a second opinion.  The Cleveland Clinic is in the top 10 list of best cancer hospitals in the US accounting to US News and World Reports, but it sounds like you have a good doctor to start with.  I traveled out of state for my surgery so I understand where you are coming from and what you are looking for. 

I would not count on growth rate as an indicator on what this is.  Benign and malignant tumors and can grow slowly, or quickly, there are some that will not grow, and even some that will shrink. 

I waited four months between finding my tumors and surgery so I get the anxiety factor.  If it gets too bad ask your doctor for something to help with the anxiety.

From reading your posts it sounds like you are a smart patient and you're working on a good plan. 

Keep us posted and asked lots of questions,

Medic

PS. I bet those SVT episodes were not a lot of fun.   

   

 

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Medic,

Those SVT episodes were miserable, AND I was having bigeminy and trigeminy as well as 30,000 pvc's per day.  I was not a happy camper.  I will ocassionally have a "reminder" with a little run of pvc's or sinus tach, usually when my potassium is on the lower end of normal, I'm pretty sensitive, LOL.    I still remember waking up after the ablation and I couldn't "feel" my heart doing anything weird, which was so strange to me!  My surgeon was Dr. J. David Burkhardt, who is now at the Texas Heart Institute and he is my hero, he gave me my quality of life back and I will always be so grateful.  

Thanks for the response, it really helps to "talk" to those that understand. 

Susan

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

A month after my first cardiac stent was placed I was getting about four skipped heartbeats a minute for about an hour. I wondered if my heart would keep on beating until morning.

But 30,000 a day would have completely freaked me out.

Steve.

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

I was short of breath and dizzy all the time, not to mention freaked out.  

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

 

Hi Suki. So sorry you have to be here. I also think that most likely your doctor will recommend that it comes out, regardless of whether it’s a cyst or RCC. I had a partial neph for a 3.5 x 3 something tumor and I did discuss cryo ablation with my oncologist/surgeon but was talked out of it. The reason he gave is that ablation is more for elderly people who are high risk for surgery, and that the gold standard for RCC is partial or full nephrectomy. If I remember correctly (it’s been four years) it’s impossible to do pathology after an ablation because it destroys the tumor. And you can’t establish clear margins for that same reason. I may not remember correctly after all this time but definitely discuss the pros and cons of ablation vs. surgery.

 If you have to have surgery try not to worry. Mine was an open partial and nothing as bad as I had feared. Wouldn’t want to do it again but my fears and imagination were way worse than the reality. I was out of the hospital on the third day and up and walking the night of the surgery. The fourth day I was home, sitting at my computer doing work.

 All the best to you and go with the most experienced surgeon! Even if it turns out not to be a cyst it's most likely stage 1 and the surgery will be the end of it.

 

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

The MRI is finally done, I woke up with a head cold, but forced myself to go through with it. Now just waiting for results, the kidney specialist's nurse said they'd call me Monday.  It's so helpful to hear other experiences, thank you so very much for the response. It's going to be a LONG weekend! 

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

Glad the MRI is done. I sitll wonder if the surgeon/Urologist will want a CT even w/o contrast? Seems they prefer CT. 

I always get my reports after tests/scans. But that's me.

Keep us posted, as I know you will!

Hugs, Jan Sending you calming vibes~

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Hi Jan,

I will get a digital report, uploaded to my patient portal, that I can print so I have a "hard copy".  I'm glad you reminded me to call and have them send me a disc, I forgot to ask them yesterday! Thanks for the calming vibes, I really need them this weekend! 

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

The MRI tech told me on Friday morning, after my MRI was finished that I would definitely hear from my doctor today.  I have called twice, and around noon the nurse said that the radiologist hadn't even read it yet.  I am frustrated and sick with worry.  Part of me is thinking maybe it's not serious since they didn't call immediately, but I think that with a mass of 4.9cm, something is going to need to be done, unless they just say they need to re-scan in 6 months?  I'm already considering Mayo in Rochester for a second opinion once I get the report and copy of the disc, has anyone had any experiences there, good or bad?  I'm also looking at the Cleveland Clinic.  I think both could do a "virtual" second opinion if I send them my records.   This waiting on scan results is miserable. Yell

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

After my nephrologist told me they found a mass on my right kidney he told me he would be making contact with the Urology department at our local "smaller" hospital.  He said to expect a call from them in a week or two.  This was on a Friday.  I was simply freaking out and couldn't wait so on Saturday I sent an electronic appointment request to Mayo.  Monday morning around 9:00 am I received a call from the appoinment desk in the Urology department at Mayo.  I told them about my situation and the lady asked when I would be available to come up.  Because I had to send my records (CT, US and doctor notes) to them it took a couple days, but I was receiving scans and meeting with the surgeon a week later.  Two weeks after that meeting I was in surgery.  I only have good things to say about the care I've received from them.  And quite honestly--with the run-a-round you are recieving--I'd make contact with them sooner rather than later.  

Let me know if you need anything else and I'll try to help any way I can.

Stub

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Thank you SO much for sharing your experience.  I will be on the phone with this specialist's office at Northwestern first thing in the morning to see if I can get someone to talk to me about my MRI results.  As soon as I can get a report and copy of my MRI disc, I will be sending my info to Mayo to see what they think.  I'm not happy at all with the lack of follow-up, so I definitely want to be seen by someone else, or at least have Mayo look over my results and records and see what they think. I have a variance of the PTEN mutation, which from what I can tell, puts me at much higher risk for renal cancer; this doctor at Northwestern agreed that I need to be very pro-active and remove this mass if necessary, and now I can't even get a call back.    Thanks again for the feedback and I may have another question or two regarding your experience at Mayo over the next few days! 

Susan

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

so they just want to repeat an MRI with contrast in 6 months.  Should I be getting another opinion?  The MRI put the size at 4.4cm, which is a bit smaller than the ultrsound size of 4.9cm. At this size, if it was cancer, couldn't they definitnely tell on the MRI?  Also, I asked the nurse the Bosniak classification and she claims that there is no Bosniak scale for MRI, only for CT.  This is Northwestern in Chicago, and it's Dr. Daniel Dalton.  

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

My tumor was a measley 2.9 cm, but I had 2 opinions that said it should come out.  I initially opted to wait 6 months for the surgery, but then I opted to have it done sooner rather than later.  Due to having what the doctors called a hostile abdomen from a major prior surgery for something else robotic/laparoscopic was not an option.  I went for an open surgery. 

One factor that weighed in favor of removal was my tumor was in a tricky place.  Thanks to Dr. Russo at MSKCC, they took the tumor and only 5% of my right kidney.  I'm three years down the road, and expect a full NED report tomorrow. 

Always better to get a second opinoin.  My first urologist thought they would have to take my entire right kidney because of the location of the tumor. I am glad I went to MSKCC for a second opinion.

bmickowski
Posts: 7
Joined: Sep 2017

We have an asppointment with Dr. Russo this Friday. Tumor is 3.5 in right kidney. Hoping for some good news on how to proceed. A partial  removal would be great. 

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

4.4 is getting on the "bigger side of small", if that makes sense.  If you are able to get a second opinion, I'd go for it.  My tumor was 5.3 at the biggest dimension, and I wouldn't have wanted it to be any larger. 

Good luck!

Stub

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

I just got a call from Dr. Dalton's nurse.  She said that he had another radiologist go over my MRI results and that he wants to see me in his office on Monday regarding this.  I'm thinking he will recommend removal of the lesion or a biopsy?  I'm not happy to have to wait until Monday, but really curious and nervous to see what he has to say. Do they really make people who might have cancer wait this long???????Frown

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

We often get to wait this long and longer. The majority of us don't get biopsies, we either get to wait and watch or wait and have surgery. Or, some of us get to wait and watch and wait and wait and have surgery. The good news is that kidney cancer tends not to grow like crazy, so waiting is not totally unreasonable medically. It's "just" potentially totally crazy-making for us doing the waiting. Got any counter tops, cupboards, closets, or a garage to clean? Casseroles to bake and freeze? 

You've got this. Just a few days more. 

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

My daughter is a 911 dispatcher and I'm cooking dinner and dessert for her and her co-workers, AND I have a feeling I'll be tackling the master bedroom closet this weekend!  I agree about the how this is all "crazy-making" for sure!  Thanks for the support, it is appreciated!   

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

So sweet of you to cook for the group and be sure to set aside a bit for the freezer.  You're on a roll, cooking & cleaning, good plan.  Less you'll be fretting about in your recovery phase.....assuming that bugger needs to make an exit.

Best wishes, keep us posted,

Donna~

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

The support is SO appreciated, I'm used to having chronic health issues, and I had a scare with a thyroid nodule, but this is a whole new level of stress!  Being busy definitely helps. 

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

Glad you finally heard something! Under 7cm is still stage I, but it also depends on WHERE it is inside the kidney that has to be considered. 

No, biopsy is usually not recommended as they don't want to pull cancer cells outside the kidney is what I heard. 

Make sure your Urologist /surgeon does laproscopic (small incisions) done robatically. It is an easier recovery, at least for me who has had 4 surgeries, 2 were robatic/laproscopic. 

And I also learned most surgeons want a CT with/without contrast. If you feel uneasy at all, yes, get another opinion. 

But remember, worrying is a waste of energy. Do some nice centered breathing, in through your nose and out, very slowly, via mouth, teeth and lips slightly apart till you notice your body settle down and relax. Helps to go someone pleasant in your mind while doing breathing technique.

Keep us informed. We're here for you all the way. You can DM me on here (email section) for any other questions.

Sending you calm, gentle hugs,

Jan

 

Hezzmeg
Posts: 1
Joined: Aug 2017

I have had a complex cyst on my left kidney for two years, it started out a little over 3cm.  In April this year it was 8.  I have been having a lot of nausea, weight loss and lower back pain so I had an ultrasound done and now it is 12cm.  Two years ago my biopsy was benign, this thing has grown so fast I'm pretty sure they are going to take my kidney.  I'm just looking for someone to talk to that understands what I'm going through. 

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

Hezzmeg, so sorry you're here but why don't you start your own thread so it doesn't get "lost" in this one that's Suki's? You'll get a lot of support here.

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

Welcome.  First and foremost--Are you seeing a RCC specialist?  If not, get to one ASAP.  If you give us an area that you are living, perhaps we can be of assistance in helping you locate one.  With the size that this "thing" is, you'll need to have it taken out.  As APny said, start a new thread and many will chime it to offer comments and support.

Stub    

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

Hello Hezzmeg how are things going? I hope the tumor has been removed or there are plans to remove it soon. If you would like to, you could let us know how things are progressing so others can offer advice and support from their own experiences.

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