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Just diagnosed and scared

Spivey88's picture
Spivey88
Posts: 43
Joined: Jun 2016

hi there!  I am new to this board.  A little background about myself.  I was diagnosed with stage 0 breast cancer at 31.  I had a double mastectomy and cancer was gone.  It had not spread to any lymph nodes.  Well fast forward and I'm now 38 and was just diagnosed with kidney cancer.  I'm scared out of my mind.  I had been having uti symptoms for a while and after many doctors I finally found one that would listen.  I had an MRI on my back and they saw, what they thought was a renal cyst.  Doctor had me go to an ultrasound because of my history and they came out and told me the same thing they told me at my mammogram...we need you to go see your doctor :( I knew it was bad then.  They had seen a mass.  I went the next day for a cat scan and it was confined a 2.7 cm mass.  I'm really really scared. 

 

Below is the report I received.  I'm scared to go read a lot about it.  Does this seem really bad?


Lung bases: Lung bases are clear. History of bilateral breast reconstruction

Hepatobiliary: No focal hepatic lesions. Gallbladder is present. No intrahepatic or extrahepatic ductal dilatation. Main portal vein is patent.

Spleen: No focal splenic lesions.

Pancreas: No focal pancreatic lesions. No peripancreatic fluid collections.

Adrenal glands: No adrenal masses.

Genitourinary: Kidneys excrete symmetrically without evidence of hydronephrosis. A heterogeneous enhancing mass is noted in the lateral aspect of the upper left kidney. This corresponds to the abnormality seen on the sonogram. It measures 2.3 x 2.6 x 2.5
cm. A very minimal amount appears to extend into the renal sinus. Left renal vein is patent. Right renal vein and IVC are patent. Single renal arteries are noted. Kidneys excrete symmetrically without evidence of hydronephrosis. No renal or proximal 
ureteral calculi. No other focal renal lesions.

Vascular/lymphatics: The abdominal aorta is normal in course and caliber. No abdominal or retroperitoneal lymphadenopathy

Gastrointestinal: Visualized bowel loops demonstrate no evidence of obstruction. History of prior abdominal wall hernia repair. Tiny fat-containing umbilical hernia again noted. Small focus of fat adjacent to the anterior abdominal wall in the midline 
which may represent a focus of post surgical change/fat necrosis. No abdominal fluid collections.

Musculoskeletal: No suspicious osseous lesions

Impression

Impression: 
1. Solid heterogeneous enhancing mass arising from the lateral aspect of the upper left kidney measuring 2.6 cm. This is most consistent with a primary renal neoplasm. No other focal renal lesions. No hydronephrosis. No urinary calculi.
2. No lymphadenopathy in the abdomen.
3. Visualized bowel loops demonstrate no evidence of obstruction. 

icemantoo's picture
icemantoo
Posts: 3286
Joined: Jan 2010

Spivey,

 

We were all scared sh==less when we were told we had Kidney Cancer. I sure was 14 years ago. Your question is Does this sound really bad? The answer is no. If you are going to get kidney cancer which nobody wants, let it be small like 2.6 cm. If it is confirmed as kidney Cancer they will remove all or part of the Kidney along with the tumor. The recovery rate for a tumor that size from the surgery alone is close to 100%. Nobody in their right mind volunteers to join our club, but we welcome you anyway. Get yourself to a Urologist specializing in Kidney Cancer and Laproscopic surgery. We will help you thru this. Many of the stories here will give you hope and comfort. Stay away from the stories about larger tumors as your prognosis does not apply where the tumor grows and misbehaves which rarely if ever happens with a tumor as small as yours.

 

The fear stuff will eventually go away. It sounds like you went thru worse than this already.

 

Icemantoo

 

Spivey88's picture
Spivey88
Posts: 43
Joined: Jun 2016

do you know anything about the renal sinus part?  I have no idea what that means.  I'm ready to take this on, just hope it hasn't spread.  Thank you for responding. 

ClaudiaB
Posts: 5
Joined: Jun 2016

i was just diagnosed yesterday and I think it's a large mass . Is it more complicated when is large? Or being large means that it already spread somewhere else

icemantoo's picture
icemantoo
Posts: 3286
Joined: Jan 2010

Sorry about the diagnosis. When you say "large", how big in cm are we talking about. With that information we can try and answer your questions without guessing.

 

Icemantoo

mrou50
Posts: 389
Joined: Mar 2013

From what I read on your scan it sounds like the cancer is localized in your kidney and the renal tube is clear that is a good thing.  The tumor is small and can easily be removed through a partial nephrectomy that is great news for you.  Caught early enough this situation can be put to rest and you should be fine.  I would say try and relax but that is virtually impossible, so instead just try to stay positive and don't be afraid to share your feelings with loved ones, and the people here.  

Mark

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

Sorry for what you're experiencing, I know it's not easy.  The renal sinus is the more interior portion of the kidney if you look at a diagram of the structure.  But from everything you posted, sounds like you'll probably get by with a partial nephrectomy and hopefully a laparascopic procedure.  The good news is it apparently has been caught very early.  Try to stay away from internet searches that are chock full of outdated information that will only scare the bejeezuz out of you.

I'll be praying for you.  Keep us posted.

Donna~

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Welcome. I understand your fear and commend you for reaching out here. This is a knowledgable group of survivors and spouses (I'm a spouse of a survivor). 

You will get more information when you have the tumor removed, obviously. Being a small size is good and suggests a partial removal of the tumor and surrounding tissue, however this will be a decision made by the surgeon when he evaluates you. Others here have gotten second opinons on that matter, so if you don't feel comfortable with the surgeon, it's ok to get a second opinion. I will mention that when tumors that push into the renal sinus this could change the type of surgery you have since this is a criteria for staging later on. What I mean is, the position of the tumor may require a removal of entire kidney instead of partial. A partial isn't always 100% certain with small tumors, just to let you know. It's also about the location of the tumor as well. 

Spivey88's picture
Spivey88
Posts: 43
Joined: Jun 2016

The renal sinus is my concern.  I wonder if that means it has spread.  Could they get all the cancer if they remove my entire kidney if it's in the renal sinus?  They said it hasnt spread to lymph nodes.  Just can't get over the renal sinus.  My mind is killing me.  Thank y'all for listening. 

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

Hey my dear, I am so sorry for ALL you have had to endure. Enuff!!!

Seems your "mass" is small and if RCC then you are probably Stage I and have a good chance of complete removal of cancer. BUT only your surgeon can explain things properly. as others have said, find a Urologist who is not only able to do this kind of RCC surgery, but has expertise in Laproscopic-robatic surgery technique. It is a much easier recovery. Trust me I have had 4 abdominal surgeries (non related RCC), two were laproscopic. Will walk you through more later. Feel free to Direct Message me for support hon.

Your surgeon will also point things on from the CT scan to let you know if you can have a partial or radical type surgery. . They will monitor you either every 3 to 6 months for a few years so rest assure, they will follow you closely.

Again, WE understand your fears and anxiety. We will walk along side you through this time if you want us to.

Hugs, Jan

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Hi, 

No, it does not mean the cancer has spread. My husband's cancer was in the renal sinus and it did not spread. He had a bigger tumor than you, though. Yes, they could get all the cancer if they remove your entire kidney and it's in the renal sinus. But you will not know any of that for 100% unti you have surgery. I would rest assured and take comfort in the small tumor being a good sign of a full recovery. 

medic1971's picture
medic1971
Posts: 200
Joined: Sep 2015

I am sorry you had to join us...

The renal sinus is just a small cavity within the kidney itself.  The mass itself maybe pushing healthy tissue into that sinus space.

You have a small renal mass and you want to try and save as much of your kidney as possible.  I know you afraid, I was in your shoes about one year ago.  Find a urologist who has a lot of experience dealing with this type of problem.  Most urologists only see about 6 of these a year in their offices.  Although it may seem like it, this is not an emergency.  Take the time to find an experienced urologist.  

When you get time please watch this video.  I promise it will help answer your questions and alleviate some of your fears

Evaluation and Management of the Small Renal Mass, Surena F. Matin, MD (Dr. Matin is a urologist at MD Anderson)

https://www.youtube.com/watch?v=blUI-ZzcViE

At 2.6 cm, surgery should be curative and no other treatments required, other than follow-up.   

Hang in there, my friend and keep us posted.  

Jason

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

If you read her Pathology report it states the tumor extends into the renal sinus space. Just clarifying. 

medic1971's picture
medic1971
Posts: 200
Joined: Sep 2015

Was there a path report posted?   I only saw the radiology report and yes I did read that report.  The report states that it appears to extend into the renal sinus.  That's not a 100% certainty that the tumor has invaded the renal sinus cavity.  No one will know until pathology has gotten their hands on it.   

Spivey88's picture
Spivey88
Posts: 43
Joined: Jun 2016

I met with my surgeon at UT Southwestern today.  He is amazing.  He says it is stage 1 and believes he can get it all with laparoscopic surgery.  He thinks he can save most the kidney.  said I should be in hospital 2 nights.  Surgery is scheduled for July 1st.  I will keep you all updated.  So thankful to have found this group!

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

Good luck

jason.2835
Posts: 337
Joined: Nov 2014

Spivey88,

We are very similar stories... Mine was 2.8cm and my doctor used the Da Vinci robot to operate.  But I had 3 arteries in my kidney and he had to take the whole thing as a precaution.  I know it's not something to exactly brag about, but it seems like you will be a double cancer survivor and will be around for a long time.  

- Jay 

 

medic1971's picture
medic1971
Posts: 200
Joined: Sep 2015

UT in Dallas, solid choice.  You will be in great hands. 

Good luck and keep us posted. 

Bay Area Guy's picture
Bay Area Guy
Posts: 457
Joined: Jun 2016

Hi Spivey.  I just had the operation you're going to have, a robotic assisted laparoscopic partial nephrectomy.  I had mine done at Stanford thanks to referral from my primary care physician.  My lesion, at the time of the operation, was 2.0 cm x 1.7 cm x 1.5 cm, so it was pretty close in size to yours.  The procedure takes about 3 to 4 hours, depending on how easy the lesion is to access.  My surgeon told me later that my lesion was deep in the kidney, but very accessible, so it took a little over three hours.....despite the fact that a fire alarm went off during the operation, according to my family.

I had three small incisions and one slightly larger, where they stuck a drain while I was in the hospital.  the small incisions will have sutures that melt.  When they take out the drain, they'll dress that incision and have you keep the dressing on for 24 hours.  When you take the dressing off, it's likely there won't be any leaking and the incision will close on its own.  I was instructed to keep the incisions dry and open to the air.

the surgeon told me he removed a lesion equivalent in size to a medium marble.  They dissected it to confirm that the outer tissue was healthy, meaning the interior included the entire lesion.  Pathology will come next week but, as people have noted, even a finding of a malignancy on our size of lesions isn't serious as the surgery is successful in 99%+ of all cases and there is no recurrence of spread.  You may need to have periodic scans to ensure that, but that's prudent anyway.

I will never say that an operation is east, as my dad had always pointed out, the only minor operation is on someone else.  But this operation seems to be several orders of magnitude easier to recover from than abdominal surgeries I've had in the past.

Just remember, when they ask you to start walking after surgery, start walking and don't stop.  That will help your recovery accelerate.

If you want more information about my operation, feel free to write me.

Best of luck on the 1st!

icemantoo's picture
icemantoo
Posts: 3286
Joined: Jan 2010

Don't overdue it. One thing I have noticed from these boards is the kids that are nephed in their 30's and 40's have it a lot easier than us older guys. I was nephed at 59 years young.

 

 

Icemantoo

Bay Area Guy's picture
Bay Area Guy
Posts: 457
Joined: Jun 2016

ice....Good point.  I sometimes get overly enthusiastic about the benefits of walking because I love it so much.

And I'm an old fart too.  Will be 61 in a couple of months.

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

Walking is wonderful, indeed.  So is cycling, but after the third time the surgeon said, "You can walk," I realized I'm going to be not-riding for a little bit after surgery.  My prayers are: please let the walking, running (meh, but I do it if training for a triathlon), bike riding, strength-training, etc  pay off for the surgery and recovery. Oh, and Tai Chi and yoga.  Gooooooood stuff. 

I'm not old enough for Medicare, but getting close. 

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

IceManToo, Spivey is a mere pup at 38.  This is good, Spivey! 

I'm no longer "pup" material, but my urologist did say I was "young, healthy, and in good shape" so should do well  (Why us older folks should go to see older physicians, I guess). 

Spivey88's picture
Spivey88
Posts: 43
Joined: Jun 2016

I wish I was still a pup.  I feel like 80 now.  My nerves are shot.  I wa a diagnosed with stage 0 breast cancer in 2009 so I have my fair of this cancer crap!  Doc says this cancer has nothing to do with my breast.  It's hard to comprehend this twice now at 38 :( have surgery friday and so nervous and just ready to be done with this.  

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

I think a cancer diagnosis can easily add AT LEAST half a century to one's feel-like age.  And to get two... Yikes, almost like bullies in the schoolyard that just won't let up?! 

Sounds like sort of good news that the two cancers aren't related or talking to each other.  Sounds like even better news that surgery will be Friday. Only a few days away, at least.  We're hanging out with you now, keep us posted...

medic1971's picture
medic1971
Posts: 200
Joined: Sep 2015

This is the worst part of it, I know.  Have you thought about asking your doctor for something to help with the anxiety?  I was on 0.5mg of Xanax for a little while.  It helped a lot, especially at night.  

Jason

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

The anxiety is the worst part of it all, for sure.  The anxiety leading up to your surgery date and then whenever you get scanned in the future for your follow-ups, it'll hit you again like a ton of bricks.  As Jason says, xanax will help a lot to help get you thru those tough times when nothing else will calm those frayed nerves.  Although he refers to a half mg dose, I'm a wimp and that would probably keep me calm for a week!  Laughing  I have a 0.25 dosage and usually I'll take half of that and it does the trick for me.  But everyone's different.  I agree with him in any case, ask for a script.  In the meantime, prepare for those days / weeks that you'll be out of commission. 

Best wishes with your surgery.

Donna~

medic1971's picture
medic1971
Posts: 200
Joined: Sep 2015

Donna, you are correct, I was prescribed 0.5mg, but you reminded me, that I broke them in half so I was only taking 0.25mg. 

tomt263
Posts: 11
Joined: Jan 2014

Just slightly larger than mine that was diagnosed 5 years ago.  I had surgery only and I am fine today.  Like yourself, and everyone else that gets this diagnosis I was scared but just make sure you consult with top rate doctors and have it treated asap.  Best wishes

 

Spivey88's picture
Spivey88
Posts: 43
Joined: Jun 2016

I had surgery yesterday and was released this evening.  I had one of the top doctors that specializes in this at UT Southwestern in Dallas.  Glad to hear you are going well. I hope to be the same in 5 years as well :) 

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